Barbara J. Howard, MD

Almost all primary care providers (PCPs) have taken on diagnosing and managing ADHD. With about 12% of school aged children affected, typical PCPs can expect about 240 children with ADHD under their care. Adopting this primary care function has been helped by having clear diagnostic criteria for the three DMS 5 “presentations” of ADHD, open source tools (e.g. Vanderbilts), expectation of collaboration by educators, American Academy of Pediatrics (AAP) guidelines for diagnosis and management, Society for Developmental–Behavioral Pediatrics guidelines for “complex ADHD,” and access to effective medication treatments PCPs can provide (although less so for behavioral ones), cultural acceptance of individuals with ADHD, and especially reliable payment by insurers.

Screening

But what about PCP management of autism spectrum disorder (ASD), now affecting 2.8%, for an expected 60 children under care for each of us? PCP detection and care for children with ASD is more complex than ADHD, but even more essential, so we need to learn the skills. It is more essential because very early detection and entry into evidence-based intervention has long-term benefits for the child and family that are not as crucial for ADHD. While ADHD symptoms may not impact functioning until age 7 or even 12 years of age, signs of ASD usually emerge earlier (by 18 months) but gradually and about 30% after apparently normal development even to age 2 years.

Howard_Barbara_BALT_2024_web.jpg

Screening is crucial, but unfortunately not perfect. Recent AAP surveys show that most PCPs screen for autism at the recommended 18 and 24 months. But what happens after that? How many offices are tracking referrals for positive screens for needed evaluations and early intervention? Our data shows that tracking is rarely done and children do not start to get the benefit of early intervention until 4.5 years of age, on average.
 

Diagnostic Testing

And screening is the easiest part of addressing ASD. Wait times for diagnostic testing can be agonizing months to years. Multiple programs are training PCPs to perform hands-on 10- to 30-minute secondary screening with considerable success. You can become proficient on tools such as STAT (Screening Tool for Autism in Two-Year-Olds), RITA-T (Rapid Interactive Screening Test for Autism in Toddlers), BISCUIT (Baby and Infant Screen for Children with Autism Traits), SORF (Systematic Observation of Red Flags), ADEC (Autism Detection in Early Childhood) or CARS (Childhood Autism Rating Scale) with a few hours of training. Even secondary assessments done virtually by PCPs such as TELE-ASD-PEDS quite accurately predict a verifiable ASD diagnosis for those referred by concerns. Some problems of the reported accuracy of these secondary screening processes have to do with validation in samples of children for whom parents or clinicians already had concern and generally not including many younger children in whom it is so important to detect. Level of confidence of developmental and behavioral pediatricians of the presence of ASD is highly related to ultimate diagnosis. But success with PCPs’ mastering secondary screening has not yet been reported to convince insurers to approve payment for intervention services such as Applied Behavior Analysis (ABA).

Comorbidity

Co-existing conditions affect the majority of patients with ASD (70%), compared with ADHD, but with a broader range and more debilitating and difficult to manage conditions. More medical co-existing issues such as intellectual disability (25%-75%), seizures (12%-26%), motor incoordination (51%), GI conditions (9%-91%), sleep difficulty (50%-80%), sleep apnea, congenital heart disease, avoidant-restrictive food intake disorder, autoimmune disorders, and genetic syndromes (e.g. Fragile X, tuberous sclerosis, Down, Angelman’s, untreated PKU, neurofibromatosis, Klinefelter syndrome) reflect the range of underpinnings of ASD. The need to detect and manage these co-existing issues, besides assessing hearing and vision, makes our skilled involvement and vigilance in ASD care essential. Referring for help from OTs, PTs, speech pathologists, neurologists, psychologists, and special educators as issues in their domains are prioritized is also our responsibility. We must also help families balance utilizing these resources so as to avoid overwhelm.

Anxiety (50%), ADHD (37%-85%), depression (54%), bipolar (7.3%), suicidal ideation (40% starting < 8 years), and emotion dysregulation, familiar to us from our management of ADHD, may develop but are often less well defined and more intractable in ASD, making use of screening tools essential. Using a system like CHADIS that has online pre-visit and monitoring screens delivered based on algorithms for the numerous co-existing conditions, automated handouts, and functions to make and track referral success can facilitate care for this complex chronic condition. Identifying mental health providers with ASD expertise is more difficult, so more management is on us. While medications for these conditions can be beneficial, we need to learn to use lower doses, slower dose increases, and employ problem-solving of side effects with more parent collaboration than for ADHD as children with ASD often cannot self-report effectively. We need to ask about the common ad hoc use of complementary medications and substances (32%-87%) that may be complicating. Of course, these conditions and the caveats of management require more of our time with the patient and family as well as communication with the many other professionals involved. It is important to set our own and our families’ expectations (and schedules) for much more frequent contact and also to bill appropriately with chronic care (99487,89,90) and collaborative care CPT codes (99492,3,4 or G2214).
 

Behavioral Manifestations

During our care, the often extreme behavioral manifestations of ASD may be the most pressing issues. We need new understanding and skills to sort out and counsel on inflexible, explosive, and sensory triggered behaviors. Just as for ADHD, using the approach of Functional Behavioral Assessment and plans for home as well as school behavior can be key. More difficult in ASD is looking for physical causes, since the child may not provide clear cues because of communication and sensory differences. Conditions common in children with ASD such as constipation, dental caries, otitis, dietary intolerances, allergies, migraine, sleep deficits, menstrual cramps, or fears and changes from puberty manifesting behaviorally are often tricky to sort out.

While the diagnosis of ASD, as for ADHD, does not require any laboratory testing, looking for possible causes is important information for the family and someday may also lead to genetic or other therapies. We need to know that recommendations include screening for Ferritin, Pb, chromosomal microarray and FMR I testing as well as checking that PKU was normal; MECP 2 is indicated in females and symptomatic males; and PTENS testing for children with head circumference greater than 2.5-3 SD. Metabolic and mitochondrial assays are indicated only when symptoms suggest. We need to develop confidence to reserve MRIs or EEGs for cases with abnormal neuro. exams, regression, or history of seizures. It is demanding to keep up with AAP recommendations in this very active area of research.
 

Interventions

The interventions for ADHD are generally school accommodations and therapies for comorbidities. In contrast, since core social communication skills are the main deficit in ASD, all children screened positive for ASD should be referred for early intervention while awaiting, as well as after, diagnosis. While all states have no or low-cost early intervention, quality and quantity (of hours offered) varies. We should also recommend and try to determine if evidence-based intervention is being provided, such as pivotal response training, UCLA discrete trial therapy, Carbone’s verbal behavior, applied behavior analysis (ABA), Early Start Denver Model, and sometimes music and social skills trainings (effect size 0.42-0.76). Such professional interventions have best evidence with more than 25 hours/week but 15 hours has benefit for higher functioning children. CBT can help anxiety even in younger children. One way for families to provide more hours and more generalizable intervention is coaching by the PLAY Project or DIRFloortime, parent mediated interventions with evidence, some with training both in person or online. Alternative communication training and other condition specific assistance are often needed (e.g. Picture Exchange Communication System for nonverbal children).

While we should already be familiar with writing 504 plan and IEP requests to schools, which also apply to children with ASD, in addition we need to be ready to advise about other legal rights including autism waivers, wraparound services, guardianship, and trust accounts. We can share quality educational materials available online (e.g. from Autism Speaks, SPARK, and Autism Navigator). Social media groups may be supportive, but also may contain disinformation we need to dispel.

Unfortunately, templates, questionnaires, and lack of interdisciplinary referral and communication functions of EHRs don’t support the complexities of care for ASD. While the AAP has guidelines for diagnosis and management and an online toolkit, consider adding a system with an autism-specific module like CHADIS and joining the Autism Care Network or ECHO Autism sessions to get both information and support to take on the evolving critical role of autism care.
 

Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.

Almost all primary care providers (PCPs) have taken on diagnosing and managing ADHD. With about 12% of school aged children affected, typical PCPs can expect about 240 children with ADHD under their care. Adopting this primary care function has been helped by having clear diagnostic criteria for the three DMS 5 “presentations” of ADHD, open source tools (e.g. Vanderbilts), expectation of collaboration by educators, American Academy of Pediatrics (AAP) guidelines for diagnosis and management, Society for Developmental–Behavioral Pediatrics guidelines for “complex ADHD,” and access to effective medication treatments PCPs can provide (although less so for behavioral ones), cultural acceptance of individuals with ADHD, and especially reliable payment by insurers.

Screening

But what about PCP management of autism spectrum disorder (ASD), now affecting 2.8%, for an expected 60 children under care for each of us? PCP detection and care for children with ASD is more complex than ADHD, but even more essential, so we need to learn the skills. It is more essential because very early detection and entry into evidence-based intervention has long-term benefits for the child and family that are not as crucial for ADHD. While ADHD symptoms may not impact functioning until age 7 or even 12 years of age, signs of ASD usually emerge earlier (by 18 months) but gradually and about 30% after apparently normal development even to age 2 years.

Howard_Barbara_BALT_2024_web.jpg

Screening is crucial, but unfortunately not perfect. Recent AAP surveys show that most PCPs screen for autism at the recommended 18 and 24 months. But what happens after that? How many offices are tracking referrals for positive screens for needed evaluations and early intervention? Our data shows that tracking is rarely done and children do not start to get the benefit of early intervention until 4.5 years of age, on average.
 

Diagnostic Testing

And screening is the easiest part of addressing ASD. Wait times for diagnostic testing can be agonizing months to years. Multiple programs are training PCPs to perform hands-on 10- to 30-minute secondary screening with considerable success. You can become proficient on tools such as STAT (Screening Tool for Autism in Two-Year-Olds), RITA-T (Rapid Interactive Screening Test for Autism in Toddlers), BISCUIT (Baby and Infant Screen for Children with Autism Traits), SORF (Systematic Observation of Red Flags), ADEC (Autism Detection in Early Childhood) or CARS (Childhood Autism Rating Scale) with a few hours of training. Even secondary assessments done virtually by PCPs such as TELE-ASD-PEDS quite accurately predict a verifiable ASD diagnosis for those referred by concerns. Some problems of the reported accuracy of these secondary screening processes have to do with validation in samples of children for whom parents or clinicians already had concern and generally not including many younger children in whom it is so important to detect. Level of confidence of developmental and behavioral pediatricians of the presence of ASD is highly related to ultimate diagnosis. But success with PCPs’ mastering secondary screening has not yet been reported to convince insurers to approve payment for intervention services such as Applied Behavior Analysis (ABA).

Comorbidity

Co-existing conditions affect the majority of patients with ASD (70%), compared with ADHD, but with a broader range and more debilitating and difficult to manage conditions. More medical co-existing issues such as intellectual disability (25%-75%), seizures (12%-26%), motor incoordination (51%), GI conditions (9%-91%), sleep difficulty (50%-80%), sleep apnea, congenital heart disease, avoidant-restrictive food intake disorder, autoimmune disorders, and genetic syndromes (e.g. Fragile X, tuberous sclerosis, Down, Angelman’s, untreated PKU, neurofibromatosis, Klinefelter syndrome) reflect the range of underpinnings of ASD. The need to detect and manage these co-existing issues, besides assessing hearing and vision, makes our skilled involvement and vigilance in ASD care essential. Referring for help from OTs, PTs, speech pathologists, neurologists, psychologists, and special educators as issues in their domains are prioritized is also our responsibility. We must also help families balance utilizing these resources so as to avoid overwhelm.

Anxiety (50%), ADHD (37%-85%), depression (54%), bipolar (7.3%), suicidal ideation (40% starting < 8 years), and emotion dysregulation, familiar to us from our management of ADHD, may develop but are often less well defined and more intractable in ASD, making use of screening tools essential. Using a system like CHADIS that has online pre-visit and monitoring screens delivered based on algorithms for the numerous co-existing conditions, automated handouts, and functions to make and track referral success can facilitate care for this complex chronic condition. Identifying mental health providers with ASD expertise is more difficult, so more management is on us. While medications for these conditions can be beneficial, we need to learn to use lower doses, slower dose increases, and employ problem-solving of side effects with more parent collaboration than for ADHD as children with ASD often cannot self-report effectively. We need to ask about the common ad hoc use of complementary medications and substances (32%-87%) that may be complicating. Of course, these conditions and the caveats of management require more of our time with the patient and family as well as communication with the many other professionals involved. It is important to set our own and our families’ expectations (and schedules) for much more frequent contact and also to bill appropriately with chronic care (99487,89,90) and collaborative care CPT codes (99492,3,4 or G2214).
 

Behavioral Manifestations

During our care, the often extreme behavioral manifestations of ASD may be the most pressing issues. We need new understanding and skills to sort out and counsel on inflexible, explosive, and sensory triggered behaviors. Just as for ADHD, using the approach of Functional Behavioral Assessment and plans for home as well as school behavior can be key. More difficult in ASD is looking for physical causes, since the child may not provide clear cues because of communication and sensory differences. Conditions common in children with ASD such as constipation, dental caries, otitis, dietary intolerances, allergies, migraine, sleep deficits, menstrual cramps, or fears and changes from puberty manifesting behaviorally are often tricky to sort out.

While the diagnosis of ASD, as for ADHD, does not require any laboratory testing, looking for possible causes is important information for the family and someday may also lead to genetic or other therapies. We need to know that recommendations include screening for Ferritin, Pb, chromosomal microarray and FMR I testing as well as checking that PKU was normal; MECP 2 is indicated in females and symptomatic males; and PTENS testing for children with head circumference greater than 2.5-3 SD. Metabolic and mitochondrial assays are indicated only when symptoms suggest. We need to develop confidence to reserve MRIs or EEGs for cases with abnormal neuro. exams, regression, or history of seizures. It is demanding to keep up with AAP recommendations in this very active area of research.
 

Interventions

The interventions for ADHD are generally school accommodations and therapies for comorbidities. In contrast, since core social communication skills are the main deficit in ASD, all children screened positive for ASD should be referred for early intervention while awaiting, as well as after, diagnosis. While all states have no or low-cost early intervention, quality and quantity (of hours offered) varies. We should also recommend and try to determine if evidence-based intervention is being provided, such as pivotal response training, UCLA discrete trial therapy, Carbone’s verbal behavior, applied behavior analysis (ABA), Early Start Denver Model, and sometimes music and social skills trainings (effect size 0.42-0.76). Such professional interventions have best evidence with more than 25 hours/week but 15 hours has benefit for higher functioning children. CBT can help anxiety even in younger children. One way for families to provide more hours and more generalizable intervention is coaching by the PLAY Project or DIRFloortime, parent mediated interventions with evidence, some with training both in person or online. Alternative communication training and other condition specific assistance are often needed (e.g. Picture Exchange Communication System for nonverbal children).

While we should already be familiar with writing 504 plan and IEP requests to schools, which also apply to children with ASD, in addition we need to be ready to advise about other legal rights including autism waivers, wraparound services, guardianship, and trust accounts. We can share quality educational materials available online (e.g. from Autism Speaks, SPARK, and Autism Navigator). Social media groups may be supportive, but also may contain disinformation we need to dispel.

Unfortunately, templates, questionnaires, and lack of interdisciplinary referral and communication functions of EHRs don’t support the complexities of care for ASD. While the AAP has guidelines for diagnosis and management and an online toolkit, consider adding a system with an autism-specific module like CHADIS and joining the Autism Care Network or ECHO Autism sessions to get both information and support to take on the evolving critical role of autism care.
 

Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.

Almost all primary care providers (PCPs) have taken on diagnosing and managing ADHD. With about 12% of school aged children affected, typical PCPs can expect about 240 children with ADHD under their care. Adopting this primary care function has been helped by having clear diagnostic criteria for the three DMS 5 “presentations” of ADHD, open source tools (e.g. Vanderbilts), expectation of collaboration by educators, American Academy of Pediatrics (AAP) guidelines for diagnosis and management, Society for Developmental–Behavioral Pediatrics guidelines for “complex ADHD,” and access to effective medication treatments PCPs can provide (although less so for behavioral ones), cultural acceptance of individuals with ADHD, and especially reliable payment by insurers.

Screening

But what about PCP management of autism spectrum disorder (ASD), now affecting 2.8%, for an expected 60 children under care for each of us? PCP detection and care for children with ASD is more complex than ADHD, but even more essential, so we need to learn the skills. It is more essential because very early detection and entry into evidence-based intervention has long-term benefits for the child and family that are not as crucial for ADHD. While ADHD symptoms may not impact functioning until age 7 or even 12 years of age, signs of ASD usually emerge earlier (by 18 months) but gradually and about 30% after apparently normal development even to age 2 years.

Howard_Barbara_BALT_2024_web.jpg

Screening is crucial, but unfortunately not perfect. Recent AAP surveys show that most PCPs screen for autism at the recommended 18 and 24 months. But what happens after that? How many offices are tracking referrals for positive screens for needed evaluations and early intervention? Our data shows that tracking is rarely done and children do not start to get the benefit of early intervention until 4.5 years of age, on average.
 

Diagnostic Testing

And screening is the easiest part of addressing ASD. Wait times for diagnostic testing can be agonizing months to years. Multiple programs are training PCPs to perform hands-on 10- to 30-minute secondary screening with considerable success. You can become proficient on tools such as STAT (Screening Tool for Autism in Two-Year-Olds), RITA-T (Rapid Interactive Screening Test for Autism in Toddlers), BISCUIT (Baby and Infant Screen for Children with Autism Traits), SORF (Systematic Observation of Red Flags), ADEC (Autism Detection in Early Childhood) or CARS (Childhood Autism Rating Scale) with a few hours of training. Even secondary assessments done virtually by PCPs such as TELE-ASD-PEDS quite accurately predict a verifiable ASD diagnosis for those referred by concerns. Some problems of the reported accuracy of these secondary screening processes have to do with validation in samples of children for whom parents or clinicians already had concern and generally not including many younger children in whom it is so important to detect. Level of confidence of developmental and behavioral pediatricians of the presence of ASD is highly related to ultimate diagnosis. But success with PCPs’ mastering secondary screening has not yet been reported to convince insurers to approve payment for intervention services such as Applied Behavior Analysis (ABA).

Comorbidity

Co-existing conditions affect the majority of patients with ASD (70%), compared with ADHD, but with a broader range and more debilitating and difficult to manage conditions. More medical co-existing issues such as intellectual disability (25%-75%), seizures (12%-26%), motor incoordination (51%), GI conditions (9%-91%), sleep difficulty (50%-80%), sleep apnea, congenital heart disease, avoidant-restrictive food intake disorder, autoimmune disorders, and genetic syndromes (e.g. Fragile X, tuberous sclerosis, Down, Angelman’s, untreated PKU, neurofibromatosis, Klinefelter syndrome) reflect the range of underpinnings of ASD. The need to detect and manage these co-existing issues, besides assessing hearing and vision, makes our skilled involvement and vigilance in ASD care essential. Referring for help from OTs, PTs, speech pathologists, neurologists, psychologists, and special educators as issues in their domains are prioritized is also our responsibility. We must also help families balance utilizing these resources so as to avoid overwhelm.

Anxiety (50%), ADHD (37%-85%), depression (54%), bipolar (7.3%), suicidal ideation (40% starting < 8 years), and emotion dysregulation, familiar to us from our management of ADHD, may develop but are often less well defined and more intractable in ASD, making use of screening tools essential. Using a system like CHADIS that has online pre-visit and monitoring screens delivered based on algorithms for the numerous co-existing conditions, automated handouts, and functions to make and track referral success can facilitate care for this complex chronic condition. Identifying mental health providers with ASD expertise is more difficult, so more management is on us. While medications for these conditions can be beneficial, we need to learn to use lower doses, slower dose increases, and employ problem-solving of side effects with more parent collaboration than for ADHD as children with ASD often cannot self-report effectively. We need to ask about the common ad hoc use of complementary medications and substances (32%-87%) that may be complicating. Of course, these conditions and the caveats of management require more of our time with the patient and family as well as communication with the many other professionals involved. It is important to set our own and our families’ expectations (and schedules) for much more frequent contact and also to bill appropriately with chronic care (99487,89,90) and collaborative care CPT codes (99492,3,4 or G2214).
 

Behavioral Manifestations

During our care, the often extreme behavioral manifestations of ASD may be the most pressing issues. We need new understanding and skills to sort out and counsel on inflexible, explosive, and sensory triggered behaviors. Just as for ADHD, using the approach of Functional Behavioral Assessment and plans for home as well as school behavior can be key. More difficult in ASD is looking for physical causes, since the child may not provide clear cues because of communication and sensory differences. Conditions common in children with ASD such as constipation, dental caries, otitis, dietary intolerances, allergies, migraine, sleep deficits, menstrual cramps, or fears and changes from puberty manifesting behaviorally are often tricky to sort out.

While the diagnosis of ASD, as for ADHD, does not require any laboratory testing, looking for possible causes is important information for the family and someday may also lead to genetic or other therapies. We need to know that recommendations include screening for Ferritin, Pb, chromosomal microarray and FMR I testing as well as checking that PKU was normal; MECP 2 is indicated in females and symptomatic males; and PTENS testing for children with head circumference greater than 2.5-3 SD. Metabolic and mitochondrial assays are indicated only when symptoms suggest. We need to develop confidence to reserve MRIs or EEGs for cases with abnormal neuro. exams, regression, or history of seizures. It is demanding to keep up with AAP recommendations in this very active area of research.
 

Interventions

The interventions for ADHD are generally school accommodations and therapies for comorbidities. In contrast, since core social communication skills are the main deficit in ASD, all children screened positive for ASD should be referred for early intervention while awaiting, as well as after, diagnosis. While all states have no or low-cost early intervention, quality and quantity (of hours offered) varies. We should also recommend and try to determine if evidence-based intervention is being provided, such as pivotal response training, UCLA discrete trial therapy, Carbone’s verbal behavior, applied behavior analysis (ABA), Early Start Denver Model, and sometimes music and social skills trainings (effect size 0.42-0.76). Such professional interventions have best evidence with more than 25 hours/week but 15 hours has benefit for higher functioning children. CBT can help anxiety even in younger children. One way for families to provide more hours and more generalizable intervention is coaching by the PLAY Project or DIRFloortime, parent mediated interventions with evidence, some with training both in person or online. Alternative communication training and other condition specific assistance are often needed (e.g. Picture Exchange Communication System for nonverbal children).

While we should already be familiar with writing 504 plan and IEP requests to schools, which also apply to children with ASD, in addition we need to be ready to advise about other legal rights including autism waivers, wraparound services, guardianship, and trust accounts. We can share quality educational materials available online (e.g. from Autism Speaks, SPARK, and Autism Navigator). Social media groups may be supportive, but also may contain disinformation we need to dispel.

Unfortunately, templates, questionnaires, and lack of interdisciplinary referral and communication functions of EHRs don’t support the complexities of care for ASD. While the AAP has guidelines for diagnosis and management and an online toolkit, consider adding a system with an autism-specific module like CHADIS and joining the Autism Care Network or ECHO Autism sessions to get both information and support to take on the evolving critical role of autism care.
 

Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.

Is picky eating a problem? Well, yes and no. We have all had parents come to us with concerns about their child’s picky eating. At this point in history, we may feel grateful not to be facing another of the myriad of our child patients who are seriously overweight. So, should we just tell parents to not worry about it?

Howard_Barbara_BALT_2024_web.jpg

About 18% of young children are picky eaters; 7% of older children, even adolescents, are still picky eaters. The lack of variety eaten can limit growth and nutrition — in particular iron, and vitamins A and C — and limit them socially at older ages because people think they’re weird because they don’t eat typical foods. The crying, tantrums, gagging, even vomiting at the sight of certain foods that may be part of picky eating is hard on families and may make them all less welcome as guests/friends. We know that if eating issues are not addressed early, they tend to persist. For example, the fruit variety eaten is actually higher at 27 months than it is at 60 months without intervention. The fruit variety eaten at 2 years of age actually predicts what the child will eat when they’re 6-8 years old. About 40% of irregular eaters at age 5 are still irregular eaters at age 14.
 

Practical Advice for Dealing With Picky Eating

There are some things you may not know about this common condition that could change your approach. Infants in the first year of life will naturally turn away from the bottle or breast when sated. But babies need to learn to eat solids, and it is actually stressful. Pushing food out is their first response. If progressively more textured foods are not provided between 6 and 10 months of age, the baby may struggle with accepting solids subsequently. Babies around 8 months want to grab everything, including the spoon, and want to feed themselves. If parents push the spoon and thwart participation, refusal to be fed — the so-called Battle of the Spoon, the most common reason for stalled weight gain at this age — may ensue. Instead, caregivers need to give the baby his/her own spoon to hold, and allow finger feeding, no matter how messy! The parent’s job is to provide healthy food in reasonable amounts, and the child’s job is to eat what they want of it.

But, often suddenly, typically around 21 months, children may become picky. What happened? This is an age of perceiving differences and developing a strong sense of autonomy. Foods recently eaten without protest may now be dramatically rejected. Whole food categories or textures (think slimy) may be refused, especially vegetables and meat. Food cut in their preferred shape, their favorite brand, or delivered in the same cup may be demanded with alternatives refused. Foods that touch together on the plate or are covered with sauce may cause a tantrum. Some of this pickiness may reflect sensitive or intense temperament. Some food preferences are cultural (borscht?), or familial (no fruit), but others are nearly universal because of the heightened sensitivity of taste at this age (spinach, for example, as it contains oxalic acid).

Young children refusing foods can have their autonomy honored by providing only healthy foods on a low table to eat as they please without commentary, but continue seating them with family for meals, allowing exit (no return) from that meal if they choose. The desire to be social and removal of pressure results in eating regular meals within a week in most cases.

Any of these new reactions may persist for years. In most cases, picky eaters get adequate nutrition and grow fine without any intervention. Removing the power struggle or parental discord is generally more important than getting the child to accept a few more foods. Keep in mind that children may have picky eating because mealtime interactions are aversive or in order to get attention or a special menu — both reinforcers to avoid.

But there are some ways food selectivity can be reduced. Modeling eating a variety of foods can make a difference but is best done without comment (seen as pressure). Seeing heroes or peers eat the food that might otherwise be undesired by a picky eater (recall Popeye, who ate his spinach), is based on this. Having a peer come over who will eat that specific food (Mikey likes it!) can be very helpful.

There are other practices that can improve picky eating and are good general feeding advice. Maintaining three meals and three snacks, always at the table with adult company, can reduce grazing on perhaps tasty and filling foods or drinks (milk being the worst) that replace the drive for eating less desired foods once seated. Providing the child a multivitamin can help parents avoid showing panic or pressure when working to increase food variety. All the foods prepared for the family should be put on the plate to increase exposure, along with at least one item the child is known to eat. Family meals have many benefits (eg, language development), and it has been shown that children who sit at a meal for 20-30 minutes eat significantly more undesired fruits and vegetables than those seated for less time. Boredom helps with exploration!

Sometimes a new brand or new way of preparing a food that they currently won’t eat, or sprinkling a new food on a currently accepted food (eg, chocolate on a fruit) will encourage eating it. Adding a food similar to one they are already eating may help.

It is wise to avoid supplements, however. While nutritionally sound and supportive of growth, supplements are usually calorie dense, and they remove the drive to eat at meals, as well as not providing the variety of components needed to reduce selectivity.
 

Advice for Severe Cases

If picky eating is severe or growth is impaired, and the eating pattern does not respond to these adjustments and parent counseling, more may be needed. One of the main things known to increase the variety eaten is repeated tasting. Looks are not enough. A proven method includes giving praise and sticker rewards for eating a little piece of the same undesired vegetable/food presented to them each day for at least 14 days in a row. This method may expand the range of foods eaten as well as the range of those liked. Even a microscopic amount, the size of a grain of rice of an undesired food, if ingested regularly and repeatedly, will increase acceptance!

A feeding program for serious problems with food selectivity at Penn State has the child given A) a pea-sized amount of an undesired food and B) a bite-sized amount of an accepted food. The child is required to eat A in order to get B, plus a small drink. This is done repeatedly for about 10 minutes. If the child does not eat anything, they don’t get anything more until the next meal. An alternative to this is insisting on one bite per meal or one bite per day of an undesired food. One can also mix in, in increasing amounts, an undesired liquid into a desired liquid. While families travel far for this special program when selectivity is extreme, the “praise and sticker” method has been shown effective done at home.

In extreme cases of food selectivity or refusal, we need to consider medical problems as a potential cause, especially if choking, gagging, or vomiting occur or if there is poor weight gain or complications such as rash, abdominal pain, or diarrhea. An episode of food poisoning or an allergic reaction (anaphylaxis can present as diarrhea) can trigger onset of a lifelong aversion to that food. Omitting foods that have sickened a person is reasonable. Gastroesophageal reflux and eosinophilic esophagitis, oral-motor incoordination and choking, dental caries, tracheo-esophageal fistulas with aspiration, constipation, sensory issues, and sometimes lactose intolerance all may cause food refusal through the conditioned responses to the discomfort. Children with autism often have a combination of these factors producing severe food selectivity for which the above methods can be helpful.

Parents everywhere take feeding their children as one of their highest priorities. Along with empathy for their concern, understanding potential contributing factors and some practical prevention and intervention steps for picky eating can help you partner on what can be a long journey. On a positive note, you can reassure parents that studies also show that picky eaters are less likely to go on to be overweight!
 

Dr. Howard is assistant professor of pediatrics at The Johns Hopkins University School of Medicine, Baltimore, and creator of CHADIS (www.CHADIS.com). She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.

Is picky eating a problem? Well, yes and no. We have all had parents come to us with concerns about their child’s picky eating. At this point in history, we may feel grateful not to be facing another of the myriad of our child patients who are seriously overweight. So, should we just tell parents to not worry about it?

Howard_Barbara_BALT_2024_web.jpg

About 18% of young children are picky eaters; 7% of older children, even adolescents, are still picky eaters. The lack of variety eaten can limit growth and nutrition — in particular iron, and vitamins A and C — and limit them socially at older ages because people think they’re weird because they don’t eat typical foods. The crying, tantrums, gagging, even vomiting at the sight of certain foods that may be part of picky eating is hard on families and may make them all less welcome as guests/friends. We know that if eating issues are not addressed early, they tend to persist. For example, the fruit variety eaten is actually higher at 27 months than it is at 60 months without intervention. The fruit variety eaten at 2 years of age actually predicts what the child will eat when they’re 6-8 years old. About 40% of irregular eaters at age 5 are still irregular eaters at age 14.
 

Practical Advice for Dealing With Picky Eating

There are some things you may not know about this common condition that could change your approach. Infants in the first year of life will naturally turn away from the bottle or breast when sated. But babies need to learn to eat solids, and it is actually stressful. Pushing food out is their first response. If progressively more textured foods are not provided between 6 and 10 months of age, the baby may struggle with accepting solids subsequently. Babies around 8 months want to grab everything, including the spoon, and want to feed themselves. If parents push the spoon and thwart participation, refusal to be fed — the so-called Battle of the Spoon, the most common reason for stalled weight gain at this age — may ensue. Instead, caregivers need to give the baby his/her own spoon to hold, and allow finger feeding, no matter how messy! The parent’s job is to provide healthy food in reasonable amounts, and the child’s job is to eat what they want of it.

But, often suddenly, typically around 21 months, children may become picky. What happened? This is an age of perceiving differences and developing a strong sense of autonomy. Foods recently eaten without protest may now be dramatically rejected. Whole food categories or textures (think slimy) may be refused, especially vegetables and meat. Food cut in their preferred shape, their favorite brand, or delivered in the same cup may be demanded with alternatives refused. Foods that touch together on the plate or are covered with sauce may cause a tantrum. Some of this pickiness may reflect sensitive or intense temperament. Some food preferences are cultural (borscht?), or familial (no fruit), but others are nearly universal because of the heightened sensitivity of taste at this age (spinach, for example, as it contains oxalic acid).

Young children refusing foods can have their autonomy honored by providing only healthy foods on a low table to eat as they please without commentary, but continue seating them with family for meals, allowing exit (no return) from that meal if they choose. The desire to be social and removal of pressure results in eating regular meals within a week in most cases.

Any of these new reactions may persist for years. In most cases, picky eaters get adequate nutrition and grow fine without any intervention. Removing the power struggle or parental discord is generally more important than getting the child to accept a few more foods. Keep in mind that children may have picky eating because mealtime interactions are aversive or in order to get attention or a special menu — both reinforcers to avoid.

But there are some ways food selectivity can be reduced. Modeling eating a variety of foods can make a difference but is best done without comment (seen as pressure). Seeing heroes or peers eat the food that might otherwise be undesired by a picky eater (recall Popeye, who ate his spinach), is based on this. Having a peer come over who will eat that specific food (Mikey likes it!) can be very helpful.

There are other practices that can improve picky eating and are good general feeding advice. Maintaining three meals and three snacks, always at the table with adult company, can reduce grazing on perhaps tasty and filling foods or drinks (milk being the worst) that replace the drive for eating less desired foods once seated. Providing the child a multivitamin can help parents avoid showing panic or pressure when working to increase food variety. All the foods prepared for the family should be put on the plate to increase exposure, along with at least one item the child is known to eat. Family meals have many benefits (eg, language development), and it has been shown that children who sit at a meal for 20-30 minutes eat significantly more undesired fruits and vegetables than those seated for less time. Boredom helps with exploration!

Sometimes a new brand or new way of preparing a food that they currently won’t eat, or sprinkling a new food on a currently accepted food (eg, chocolate on a fruit) will encourage eating it. Adding a food similar to one they are already eating may help.

It is wise to avoid supplements, however. While nutritionally sound and supportive of growth, supplements are usually calorie dense, and they remove the drive to eat at meals, as well as not providing the variety of components needed to reduce selectivity.
 

Advice for Severe Cases

If picky eating is severe or growth is impaired, and the eating pattern does not respond to these adjustments and parent counseling, more may be needed. One of the main things known to increase the variety eaten is repeated tasting. Looks are not enough. A proven method includes giving praise and sticker rewards for eating a little piece of the same undesired vegetable/food presented to them each day for at least 14 days in a row. This method may expand the range of foods eaten as well as the range of those liked. Even a microscopic amount, the size of a grain of rice of an undesired food, if ingested regularly and repeatedly, will increase acceptance!

A feeding program for serious problems with food selectivity at Penn State has the child given A) a pea-sized amount of an undesired food and B) a bite-sized amount of an accepted food. The child is required to eat A in order to get B, plus a small drink. This is done repeatedly for about 10 minutes. If the child does not eat anything, they don’t get anything more until the next meal. An alternative to this is insisting on one bite per meal or one bite per day of an undesired food. One can also mix in, in increasing amounts, an undesired liquid into a desired liquid. While families travel far for this special program when selectivity is extreme, the “praise and sticker” method has been shown effective done at home.

In extreme cases of food selectivity or refusal, we need to consider medical problems as a potential cause, especially if choking, gagging, or vomiting occur or if there is poor weight gain or complications such as rash, abdominal pain, or diarrhea. An episode of food poisoning or an allergic reaction (anaphylaxis can present as diarrhea) can trigger onset of a lifelong aversion to that food. Omitting foods that have sickened a person is reasonable. Gastroesophageal reflux and eosinophilic esophagitis, oral-motor incoordination and choking, dental caries, tracheo-esophageal fistulas with aspiration, constipation, sensory issues, and sometimes lactose intolerance all may cause food refusal through the conditioned responses to the discomfort. Children with autism often have a combination of these factors producing severe food selectivity for which the above methods can be helpful.

Parents everywhere take feeding their children as one of their highest priorities. Along with empathy for their concern, understanding potential contributing factors and some practical prevention and intervention steps for picky eating can help you partner on what can be a long journey. On a positive note, you can reassure parents that studies also show that picky eaters are less likely to go on to be overweight!
 

Dr. Howard is assistant professor of pediatrics at The Johns Hopkins University School of Medicine, Baltimore, and creator of CHADIS (www.CHADIS.com). She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.

Is picky eating a problem? Well, yes and no. We have all had parents come to us with concerns about their child’s picky eating. At this point in history, we may feel grateful not to be facing another of the myriad of our child patients who are seriously overweight. So, should we just tell parents to not worry about it?

Howard_Barbara_BALT_2024_web.jpg

About 18% of young children are picky eaters; 7% of older children, even adolescents, are still picky eaters. The lack of variety eaten can limit growth and nutrition — in particular iron, and vitamins A and C — and limit them socially at older ages because people think they’re weird because they don’t eat typical foods. The crying, tantrums, gagging, even vomiting at the sight of certain foods that may be part of picky eating is hard on families and may make them all less welcome as guests/friends. We know that if eating issues are not addressed early, they tend to persist. For example, the fruit variety eaten is actually higher at 27 months than it is at 60 months without intervention. The fruit variety eaten at 2 years of age actually predicts what the child will eat when they’re 6-8 years old. About 40% of irregular eaters at age 5 are still irregular eaters at age 14.
 

Practical Advice for Dealing With Picky Eating

There are some things you may not know about this common condition that could change your approach. Infants in the first year of life will naturally turn away from the bottle or breast when sated. But babies need to learn to eat solids, and it is actually stressful. Pushing food out is their first response. If progressively more textured foods are not provided between 6 and 10 months of age, the baby may struggle with accepting solids subsequently. Babies around 8 months want to grab everything, including the spoon, and want to feed themselves. If parents push the spoon and thwart participation, refusal to be fed — the so-called Battle of the Spoon, the most common reason for stalled weight gain at this age — may ensue. Instead, caregivers need to give the baby his/her own spoon to hold, and allow finger feeding, no matter how messy! The parent’s job is to provide healthy food in reasonable amounts, and the child’s job is to eat what they want of it.

But, often suddenly, typically around 21 months, children may become picky. What happened? This is an age of perceiving differences and developing a strong sense of autonomy. Foods recently eaten without protest may now be dramatically rejected. Whole food categories or textures (think slimy) may be refused, especially vegetables and meat. Food cut in their preferred shape, their favorite brand, or delivered in the same cup may be demanded with alternatives refused. Foods that touch together on the plate or are covered with sauce may cause a tantrum. Some of this pickiness may reflect sensitive or intense temperament. Some food preferences are cultural (borscht?), or familial (no fruit), but others are nearly universal because of the heightened sensitivity of taste at this age (spinach, for example, as it contains oxalic acid).

Young children refusing foods can have their autonomy honored by providing only healthy foods on a low table to eat as they please without commentary, but continue seating them with family for meals, allowing exit (no return) from that meal if they choose. The desire to be social and removal of pressure results in eating regular meals within a week in most cases.

Any of these new reactions may persist for years. In most cases, picky eaters get adequate nutrition and grow fine without any intervention. Removing the power struggle or parental discord is generally more important than getting the child to accept a few more foods. Keep in mind that children may have picky eating because mealtime interactions are aversive or in order to get attention or a special menu — both reinforcers to avoid.

But there are some ways food selectivity can be reduced. Modeling eating a variety of foods can make a difference but is best done without comment (seen as pressure). Seeing heroes or peers eat the food that might otherwise be undesired by a picky eater (recall Popeye, who ate his spinach), is based on this. Having a peer come over who will eat that specific food (Mikey likes it!) can be very helpful.

There are other practices that can improve picky eating and are good general feeding advice. Maintaining three meals and three snacks, always at the table with adult company, can reduce grazing on perhaps tasty and filling foods or drinks (milk being the worst) that replace the drive for eating less desired foods once seated. Providing the child a multivitamin can help parents avoid showing panic or pressure when working to increase food variety. All the foods prepared for the family should be put on the plate to increase exposure, along with at least one item the child is known to eat. Family meals have many benefits (eg, language development), and it has been shown that children who sit at a meal for 20-30 minutes eat significantly more undesired fruits and vegetables than those seated for less time. Boredom helps with exploration!

Sometimes a new brand or new way of preparing a food that they currently won’t eat, or sprinkling a new food on a currently accepted food (eg, chocolate on a fruit) will encourage eating it. Adding a food similar to one they are already eating may help.

It is wise to avoid supplements, however. While nutritionally sound and supportive of growth, supplements are usually calorie dense, and they remove the drive to eat at meals, as well as not providing the variety of components needed to reduce selectivity.
 

Advice for Severe Cases

If picky eating is severe or growth is impaired, and the eating pattern does not respond to these adjustments and parent counseling, more may be needed. One of the main things known to increase the variety eaten is repeated tasting. Looks are not enough. A proven method includes giving praise and sticker rewards for eating a little piece of the same undesired vegetable/food presented to them each day for at least 14 days in a row. This method may expand the range of foods eaten as well as the range of those liked. Even a microscopic amount, the size of a grain of rice of an undesired food, if ingested regularly and repeatedly, will increase acceptance!

A feeding program for serious problems with food selectivity at Penn State has the child given A) a pea-sized amount of an undesired food and B) a bite-sized amount of an accepted food. The child is required to eat A in order to get B, plus a small drink. This is done repeatedly for about 10 minutes. If the child does not eat anything, they don’t get anything more until the next meal. An alternative to this is insisting on one bite per meal or one bite per day of an undesired food. One can also mix in, in increasing amounts, an undesired liquid into a desired liquid. While families travel far for this special program when selectivity is extreme, the “praise and sticker” method has been shown effective done at home.

In extreme cases of food selectivity or refusal, we need to consider medical problems as a potential cause, especially if choking, gagging, or vomiting occur or if there is poor weight gain or complications such as rash, abdominal pain, or diarrhea. An episode of food poisoning or an allergic reaction (anaphylaxis can present as diarrhea) can trigger onset of a lifelong aversion to that food. Omitting foods that have sickened a person is reasonable. Gastroesophageal reflux and eosinophilic esophagitis, oral-motor incoordination and choking, dental caries, tracheo-esophageal fistulas with aspiration, constipation, sensory issues, and sometimes lactose intolerance all may cause food refusal through the conditioned responses to the discomfort. Children with autism often have a combination of these factors producing severe food selectivity for which the above methods can be helpful.

Parents everywhere take feeding their children as one of their highest priorities. Along with empathy for their concern, understanding potential contributing factors and some practical prevention and intervention steps for picky eating can help you partner on what can be a long journey. On a positive note, you can reassure parents that studies also show that picky eaters are less likely to go on to be overweight!
 

Dr. Howard is assistant professor of pediatrics at The Johns Hopkins University School of Medicine, Baltimore, and creator of CHADIS (www.CHADIS.com). She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.

Children with attention-deficit/hyperactivity disorder (ADHD) are mainly cared for in primary care settings by us. Management of this chronic neurodevelopmental condition that affects 5+% of children worldwide should include proper diagnosis, assessment for contributing and comorbid conditions, behavioral intervention (the primary treatment for preschoolers), ensuring good sleep and nutrition, and usually medication.

Because stimulants are very effective for reducing ADHD symptoms, we may readily begin these first-line medications even on the initial visit when the diagnosis is determined. But are we really thoughtful about knowing and explaining the potential short- and long-term side effects of these medications that may then be used for many years? Considerable discussion with the child and parents may be needed to address their concerns, balanced with benefits, and to make a plan for their access and use of stimulants (and other medications for ADHD not the topic here).

Howard_Barbara_BALT_2024_web.jpg

Consider the Side Effects

In children older than 6 years, some form of either a methylphenidate (MPH) or a dextroamphetamine (DA) class of stimulant have been shown to be equally effective in reducing symptoms of ADHD in about 77% of cases, but side effects are common, mostly mild, and mostly in the first months of use. These include reduced appetite, abdominal pain, headache, weight loss, tics, jitteriness, and delays in falling asleep. About half of all children treated will have one of these adverse effects over 5 years, with reduced appetite the most common. There is no difference in effectiveness or side effects by presentation type, i.e. hyperactive, inattentive, or combined, but the DA forms are associated with more side effects than MPH (10% vs. 6%). Medicated preschoolers have more and different side effects which, in addition to those above, may include listlessness, social withdrawal, and repetitive movements. Fortunately, we can reassure families that side effects can usually be readily managed by slower ramp up of dose, spacing to ensure appetite for meals, extra snacks, attention to bowel patterns and bedtime routines, or change in medication class.

Rates of tics while on stimulants are low irrespective of whether DA or MPH is used, and are usually transient, but difficult cases may occur, sometimes as part of Tourette’s, although not a contraindication. Additional side effects of concern are anxiety, irritability, sadness, and overfocusing that may require a change in class of stimulant or to a nonstimulant. Keep in mind that these symptoms may represent comorbid conditions to ADHD, warranting counseling intervention rather than being a medication side effect. Both initial assessment for ADHD and monitoring should look for comorbidities whether medication is used or not.

Measuring height, weight, pulse, and blood pressure should be part of ADHD care. How concerned should you and the family be about variations? Growth rate declines are more common in preschool children; in the PATS study height varied by 20.3%, and weight by 55.2%, more in heavier children. Growth can be protected by providing favored food for school, encouraging eating when hungry, and an evening fourth meal. You can reassure families that, even with continual use of stimulant medicines for years and initial deficits of 2 cm and 2.7 kg compared to expected, no significant differences remain in adulthood.

This longitudinal growth data was collected when short-acting stimulants were the usual, rather than the now common long-acting stimulants given 7 days per week, however. Children on transdermal MPH with 12-hour release over 3 years showed a small but significant delay in growth with the mean deficit rates 1.3 kg/year mainly in the first year, and 0.68 cm/year in height in the second year. If we see growth not recovering as it is expected to after the first year of treatment, we can advise shorter-acting forms, and medication “holidays” on weekends or vacations, that reduce but do not end the deficits. When concerned, a nonstimulant can be selected.

Blood pressure and pulse rate are predictably slightly increased on stimulants (about 2-4 mm Hg and about 3-6 bpm) but not clinically significantly. Although ECGs are not routinely recommended, careful consideration and consultation is warranted before starting stimulants for any patient with structural cardiac abnormalities, unexplained syncope, exertional chest pain, or a family history of sudden death in children or young adults. Neither current nor former users of stimulants for ADHD were found to have greater rates of cardiac events than the general population, however.
 

Misuse and abuse

Misuse and diversion of stimulants is common (e.g. 26% diverted MPH in the past month; 14% of 12th graders divert DA), often undetected, and potentially dangerous. And the problem is not limited to just the kids. Sixteen percent of parents reported diversion of stimulant medication to another household member, mainly to themselves. Stimulant overdose can occur, especially taken parenterally, and presents with dilated pupils, tremor, agitation, hyperreflexia, combative behavior, confusion, hallucinations, delirium, anxiety, paranoia, movement disorders, and/or seizures. Fortunately, overdose of prescribed stimulants is rarely fatal if medically managed, but recent “fake” Adderall (not from pharmacies) has been circulating. These fake drugs may contain lethal amounts of fentanyl or methamphetamine. Point out to families that a peer-provided stimulant not prescribed for them may have underlying medical or psychiatric issues that increase adverse events. Selling stimulants can have serious legal implications, with punishments ranging from fines to incarceration. A record of arrest during adolescence increases the likelihood of high school dropout, lack of 4-year college education, and later employment barriers. Besides these serious outcomes, it is useful to remind patients that if they deviate from your recommended dosing that you, and others, will not prescribe for them in the future the medication that has been supporting their successful functioning.

You can be fooled about being able to tell if your patients are misusing or diverting the stimulants you prescribe. Most (59%) physicians suspect that more than one of their patients with ADHD has diverted or feigned symptoms (66%) to get a prescription. Women were less likely to suspect their patients than are men, though, so be vigilant! Child psychiatrists had the highest suspicion with their greater proportion of patients with ADHD plus conduct or substance use disorder, who account for 83% of misusers/diverters. We can use education about misuse, pill counts, contracts on dosing, or switching to long-acting or nonstimulants to curb this.
 

Additional concerns

With more ADHD diagnosis and stimulants used for many years should we worry about longer-term issues? There have been reports in rodent models and a few children of chromosomal changes with stimulant exposure, but reviewers do not interpret these as an individual cancer risk. Record review of patients who received stimulants showed lower numbers of cancer than expected. Nor is there evidence of reproductive effects of stimulants, although use during pregnancy is not cleared.

Stimulants carry a boxed warning as having high potential for abuse and psychological or physical dependence, which is unsurprising given their effects on brain reward pathways. However, neither past nor present use of stimulants for ADHD has been associated with greater substance use long term.

To top off these issues, recent shortages of stimulants complicate ADHD management. Most states require electronic prescribing, US rules only allowing one transfer of such e-prescriptions. With many pharmacies refusing to tell families about availability, we must make multiple calls to locate a source. Pharmacists could help us by looking up patient names of abusers on the registry and identifying sites with adequate supplies.

While we need to educate ourselves and our patients about potential and manifest side effects and risks of stimulants, we need to balance those concerns with their high effectiveness for improving daily functioning of our many patients with ADHD.

Dr. Howard is assistant professor of pediatrics at The Johns Hopkins University School of Medicine, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.

Children with attention-deficit/hyperactivity disorder (ADHD) are mainly cared for in primary care settings by us. Management of this chronic neurodevelopmental condition that affects 5+% of children worldwide should include proper diagnosis, assessment for contributing and comorbid conditions, behavioral intervention (the primary treatment for preschoolers), ensuring good sleep and nutrition, and usually medication.

Because stimulants are very effective for reducing ADHD symptoms, we may readily begin these first-line medications even on the initial visit when the diagnosis is determined. But are we really thoughtful about knowing and explaining the potential short- and long-term side effects of these medications that may then be used for many years? Considerable discussion with the child and parents may be needed to address their concerns, balanced with benefits, and to make a plan for their access and use of stimulants (and other medications for ADHD not the topic here).

Howard_Barbara_BALT_2024_web.jpg

Consider the Side Effects

In children older than 6 years, some form of either a methylphenidate (MPH) or a dextroamphetamine (DA) class of stimulant have been shown to be equally effective in reducing symptoms of ADHD in about 77% of cases, but side effects are common, mostly mild, and mostly in the first months of use. These include reduced appetite, abdominal pain, headache, weight loss, tics, jitteriness, and delays in falling asleep. About half of all children treated will have one of these adverse effects over 5 years, with reduced appetite the most common. There is no difference in effectiveness or side effects by presentation type, i.e. hyperactive, inattentive, or combined, but the DA forms are associated with more side effects than MPH (10% vs. 6%). Medicated preschoolers have more and different side effects which, in addition to those above, may include listlessness, social withdrawal, and repetitive movements. Fortunately, we can reassure families that side effects can usually be readily managed by slower ramp up of dose, spacing to ensure appetite for meals, extra snacks, attention to bowel patterns and bedtime routines, or change in medication class.

Rates of tics while on stimulants are low irrespective of whether DA or MPH is used, and are usually transient, but difficult cases may occur, sometimes as part of Tourette’s, although not a contraindication. Additional side effects of concern are anxiety, irritability, sadness, and overfocusing that may require a change in class of stimulant or to a nonstimulant. Keep in mind that these symptoms may represent comorbid conditions to ADHD, warranting counseling intervention rather than being a medication side effect. Both initial assessment for ADHD and monitoring should look for comorbidities whether medication is used or not.

Measuring height, weight, pulse, and blood pressure should be part of ADHD care. How concerned should you and the family be about variations? Growth rate declines are more common in preschool children; in the PATS study height varied by 20.3%, and weight by 55.2%, more in heavier children. Growth can be protected by providing favored food for school, encouraging eating when hungry, and an evening fourth meal. You can reassure families that, even with continual use of stimulant medicines for years and initial deficits of 2 cm and 2.7 kg compared to expected, no significant differences remain in adulthood.

This longitudinal growth data was collected when short-acting stimulants were the usual, rather than the now common long-acting stimulants given 7 days per week, however. Children on transdermal MPH with 12-hour release over 3 years showed a small but significant delay in growth with the mean deficit rates 1.3 kg/year mainly in the first year, and 0.68 cm/year in height in the second year. If we see growth not recovering as it is expected to after the first year of treatment, we can advise shorter-acting forms, and medication “holidays” on weekends or vacations, that reduce but do not end the deficits. When concerned, a nonstimulant can be selected.

Blood pressure and pulse rate are predictably slightly increased on stimulants (about 2-4 mm Hg and about 3-6 bpm) but not clinically significantly. Although ECGs are not routinely recommended, careful consideration and consultation is warranted before starting stimulants for any patient with structural cardiac abnormalities, unexplained syncope, exertional chest pain, or a family history of sudden death in children or young adults. Neither current nor former users of stimulants for ADHD were found to have greater rates of cardiac events than the general population, however.
 

Misuse and abuse

Misuse and diversion of stimulants is common (e.g. 26% diverted MPH in the past month; 14% of 12th graders divert DA), often undetected, and potentially dangerous. And the problem is not limited to just the kids. Sixteen percent of parents reported diversion of stimulant medication to another household member, mainly to themselves. Stimulant overdose can occur, especially taken parenterally, and presents with dilated pupils, tremor, agitation, hyperreflexia, combative behavior, confusion, hallucinations, delirium, anxiety, paranoia, movement disorders, and/or seizures. Fortunately, overdose of prescribed stimulants is rarely fatal if medically managed, but recent “fake” Adderall (not from pharmacies) has been circulating. These fake drugs may contain lethal amounts of fentanyl or methamphetamine. Point out to families that a peer-provided stimulant not prescribed for them may have underlying medical or psychiatric issues that increase adverse events. Selling stimulants can have serious legal implications, with punishments ranging from fines to incarceration. A record of arrest during adolescence increases the likelihood of high school dropout, lack of 4-year college education, and later employment barriers. Besides these serious outcomes, it is useful to remind patients that if they deviate from your recommended dosing that you, and others, will not prescribe for them in the future the medication that has been supporting their successful functioning.

You can be fooled about being able to tell if your patients are misusing or diverting the stimulants you prescribe. Most (59%) physicians suspect that more than one of their patients with ADHD has diverted or feigned symptoms (66%) to get a prescription. Women were less likely to suspect their patients than are men, though, so be vigilant! Child psychiatrists had the highest suspicion with their greater proportion of patients with ADHD plus conduct or substance use disorder, who account for 83% of misusers/diverters. We can use education about misuse, pill counts, contracts on dosing, or switching to long-acting or nonstimulants to curb this.
 

Additional concerns

With more ADHD diagnosis and stimulants used for many years should we worry about longer-term issues? There have been reports in rodent models and a few children of chromosomal changes with stimulant exposure, but reviewers do not interpret these as an individual cancer risk. Record review of patients who received stimulants showed lower numbers of cancer than expected. Nor is there evidence of reproductive effects of stimulants, although use during pregnancy is not cleared.

Stimulants carry a boxed warning as having high potential for abuse and psychological or physical dependence, which is unsurprising given their effects on brain reward pathways. However, neither past nor present use of stimulants for ADHD has been associated with greater substance use long term.

To top off these issues, recent shortages of stimulants complicate ADHD management. Most states require electronic prescribing, US rules only allowing one transfer of such e-prescriptions. With many pharmacies refusing to tell families about availability, we must make multiple calls to locate a source. Pharmacists could help us by looking up patient names of abusers on the registry and identifying sites with adequate supplies.

While we need to educate ourselves and our patients about potential and manifest side effects and risks of stimulants, we need to balance those concerns with their high effectiveness for improving daily functioning of our many patients with ADHD.

Dr. Howard is assistant professor of pediatrics at The Johns Hopkins University School of Medicine, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.

Children with attention-deficit/hyperactivity disorder (ADHD) are mainly cared for in primary care settings by us. Management of this chronic neurodevelopmental condition that affects 5+% of children worldwide should include proper diagnosis, assessment for contributing and comorbid conditions, behavioral intervention (the primary treatment for preschoolers), ensuring good sleep and nutrition, and usually medication.

Because stimulants are very effective for reducing ADHD symptoms, we may readily begin these first-line medications even on the initial visit when the diagnosis is determined. But are we really thoughtful about knowing and explaining the potential short- and long-term side effects of these medications that may then be used for many years? Considerable discussion with the child and parents may be needed to address their concerns, balanced with benefits, and to make a plan for their access and use of stimulants (and other medications for ADHD not the topic here).

Howard_Barbara_BALT_2024_web.jpg

Consider the Side Effects

In children older than 6 years, some form of either a methylphenidate (MPH) or a dextroamphetamine (DA) class of stimulant have been shown to be equally effective in reducing symptoms of ADHD in about 77% of cases, but side effects are common, mostly mild, and mostly in the first months of use. These include reduced appetite, abdominal pain, headache, weight loss, tics, jitteriness, and delays in falling asleep. About half of all children treated will have one of these adverse effects over 5 years, with reduced appetite the most common. There is no difference in effectiveness or side effects by presentation type, i.e. hyperactive, inattentive, or combined, but the DA forms are associated with more side effects than MPH (10% vs. 6%). Medicated preschoolers have more and different side effects which, in addition to those above, may include listlessness, social withdrawal, and repetitive movements. Fortunately, we can reassure families that side effects can usually be readily managed by slower ramp up of dose, spacing to ensure appetite for meals, extra snacks, attention to bowel patterns and bedtime routines, or change in medication class.

Rates of tics while on stimulants are low irrespective of whether DA or MPH is used, and are usually transient, but difficult cases may occur, sometimes as part of Tourette’s, although not a contraindication. Additional side effects of concern are anxiety, irritability, sadness, and overfocusing that may require a change in class of stimulant or to a nonstimulant. Keep in mind that these symptoms may represent comorbid conditions to ADHD, warranting counseling intervention rather than being a medication side effect. Both initial assessment for ADHD and monitoring should look for comorbidities whether medication is used or not.

Measuring height, weight, pulse, and blood pressure should be part of ADHD care. How concerned should you and the family be about variations? Growth rate declines are more common in preschool children; in the PATS study height varied by 20.3%, and weight by 55.2%, more in heavier children. Growth can be protected by providing favored food for school, encouraging eating when hungry, and an evening fourth meal. You can reassure families that, even with continual use of stimulant medicines for years and initial deficits of 2 cm and 2.7 kg compared to expected, no significant differences remain in adulthood.

This longitudinal growth data was collected when short-acting stimulants were the usual, rather than the now common long-acting stimulants given 7 days per week, however. Children on transdermal MPH with 12-hour release over 3 years showed a small but significant delay in growth with the mean deficit rates 1.3 kg/year mainly in the first year, and 0.68 cm/year in height in the second year. If we see growth not recovering as it is expected to after the first year of treatment, we can advise shorter-acting forms, and medication “holidays” on weekends or vacations, that reduce but do not end the deficits. When concerned, a nonstimulant can be selected.

Blood pressure and pulse rate are predictably slightly increased on stimulants (about 2-4 mm Hg and about 3-6 bpm) but not clinically significantly. Although ECGs are not routinely recommended, careful consideration and consultation is warranted before starting stimulants for any patient with structural cardiac abnormalities, unexplained syncope, exertional chest pain, or a family history of sudden death in children or young adults. Neither current nor former users of stimulants for ADHD were found to have greater rates of cardiac events than the general population, however.
 

Misuse and abuse

Misuse and diversion of stimulants is common (e.g. 26% diverted MPH in the past month; 14% of 12th graders divert DA), often undetected, and potentially dangerous. And the problem is not limited to just the kids. Sixteen percent of parents reported diversion of stimulant medication to another household member, mainly to themselves. Stimulant overdose can occur, especially taken parenterally, and presents with dilated pupils, tremor, agitation, hyperreflexia, combative behavior, confusion, hallucinations, delirium, anxiety, paranoia, movement disorders, and/or seizures. Fortunately, overdose of prescribed stimulants is rarely fatal if medically managed, but recent “fake” Adderall (not from pharmacies) has been circulating. These fake drugs may contain lethal amounts of fentanyl or methamphetamine. Point out to families that a peer-provided stimulant not prescribed for them may have underlying medical or psychiatric issues that increase adverse events. Selling stimulants can have serious legal implications, with punishments ranging from fines to incarceration. A record of arrest during adolescence increases the likelihood of high school dropout, lack of 4-year college education, and later employment barriers. Besides these serious outcomes, it is useful to remind patients that if they deviate from your recommended dosing that you, and others, will not prescribe for them in the future the medication that has been supporting their successful functioning.

You can be fooled about being able to tell if your patients are misusing or diverting the stimulants you prescribe. Most (59%) physicians suspect that more than one of their patients with ADHD has diverted or feigned symptoms (66%) to get a prescription. Women were less likely to suspect their patients than are men, though, so be vigilant! Child psychiatrists had the highest suspicion with their greater proportion of patients with ADHD plus conduct or substance use disorder, who account for 83% of misusers/diverters. We can use education about misuse, pill counts, contracts on dosing, or switching to long-acting or nonstimulants to curb this.
 

Additional concerns

With more ADHD diagnosis and stimulants used for many years should we worry about longer-term issues? There have been reports in rodent models and a few children of chromosomal changes with stimulant exposure, but reviewers do not interpret these as an individual cancer risk. Record review of patients who received stimulants showed lower numbers of cancer than expected. Nor is there evidence of reproductive effects of stimulants, although use during pregnancy is not cleared.

Stimulants carry a boxed warning as having high potential for abuse and psychological or physical dependence, which is unsurprising given their effects on brain reward pathways. However, neither past nor present use of stimulants for ADHD has been associated with greater substance use long term.

To top off these issues, recent shortages of stimulants complicate ADHD management. Most states require electronic prescribing, US rules only allowing one transfer of such e-prescriptions. With many pharmacies refusing to tell families about availability, we must make multiple calls to locate a source. Pharmacists could help us by looking up patient names of abusers on the registry and identifying sites with adequate supplies.

While we need to educate ourselves and our patients about potential and manifest side effects and risks of stimulants, we need to balance those concerns with their high effectiveness for improving daily functioning of our many patients with ADHD.

Dr. Howard is assistant professor of pediatrics at The Johns Hopkins University School of Medicine, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.

We have all been using technology in our primary care practices for a long time but newer formats have been emerging so fast that our minds, much less our staff’s minds, may be spinning.

Our old friend the telephone, a time-soaking nemesis for scheduling, checking coverage, questions calls, prescribing, quick consults, and follow-up is being replaced by EHR portals and SMS for messaging (e.g. DoctorConnect, SimplePractice), drop-in televisits and patient education links on our websites (e.g. Schmitt Pediatric Care, Remedy Connect), and chatbots for scheduling (e.g. CHEC-UP). While time is saved, what is lost may be hearing the subtext of anxiety or misperceptions in parents’ voices that would change our advice and the empathetic human connection in conversations with our patients. A hybrid approach may be better.

Howard_Barbara_J_BALT_2022_web.jpg

The paper appointment book has been replaced by scheduling systems sometimes lacking in flexibility for double booking, sibling visits, and variable length or extremely valuable multi-professional visits. Allowing patients to book their own visits may place complex problems in inappropriate slots, so only allowing online requests for visits is safer. On the other hand, many of us can now squeeze in “same day” televisits (e.g. Blueberry Pediatrics), sometimes from outside our practice (e.g., zocdoc), to increase payments and even entice new patients to enroll.

Amazing advances in technology are being made in specialty care such as genetic modifications (CRISPR), immunotherapies (mRNA vaccines and AI drug design), robot-assisted surgery, and 3-D printing of body parts and prosthetics. Technology as treatment such as transcranial magnetic stimulation and vagal stimulation are finding value in psychiatry.

But beside being aware of and able to order such specialty technologies, innovations are now extending our senses in primary care such as amplified or visual stethoscopes, bedside ultrasound (e.g. Butterfly), remote visualization (oto-, endo-)scopes, photographic vision screens (e.g. iScreen) for skin lesion (VisualDx) and genetic syndrome facial recognition. We need to be sure that technologies are tested and calibrated for children and different racial groups and genders to provide safe and equitable care. Early adoption may not always be the best approach. Costs of technology, as usual, may limit access to these advanced care aids especially, as usual, in practices serving low income and rural communities.

Patients, especially younger parents and youth, now expect to participate and can directly benefit from technology as part of their health care. Validated parent or self-report screens (e.g. EHRs, Phreesia) can detect important issues early for more effective intervention. Such questionnaires typically provide a pass/fail result or score, but other delivery systems (e.g. CHADIS) include interpretation, assist patients/parents in setting visit priorities and health goals, and even chain results of one questionnaire to secondary screens to hone in on problems, sometimes obviating a time-consuming second visit. Patient-completed comprehensive questionnaires (e.g. Well Visit Planner, CHADIS) allow us time to use our skills to focus on concerns, education, and management rather than asking myriad routine questions. Some (e.g. CHADIS) even create visit documentation reducing our “pajama time” write ups (and burnout); automate repeated online measures to track progress; and use questionnaire results to trigger related patient-specific education and resources rather than the often-ignored generic EHR handouts.

Digital therapeutics such as apps for anxiety (e.g. Calm), depression (e.g. SparkRx, Cass), weight control (e.g. Noom, Lose it), fitness, or sleep tracking (e.g. Whoop) help educate and, in some cases, provide real-time feedback to personalize discovery of contributing factors in order to maintain motivation for positive health behavior change. Some video games improve ADHD symptoms (e.g. EndeavorRX). Virtual reality scenarios have been shown to desensitize those with PTSD and social anxiety or teach social skills to children with autism.

Systems that trigger resource listings (including apps) from screen results can help, but now with over 10,000 apps for mental health, knowing what to recommend for what conditions is a challenge for which ratings (e.g. MINDapps.org) can help. With few product reps visiting to tell us what’s new, we need to read critically about innovations, search the web, subscribe to the AAP SOAPM LISTSERV, visit exhibitors at professional meetings, and talk with peers.

All the digital data collected from health care technology, if assembled with privacy constraints and analyzed with advanced statistical methods, have the possibility, with or without inclusion of genomic data, to allow for more accurate diagnostic and treatment decision support. While AI can search widely for patterns, it needs to be “trained” on appropriate data to make correct conclusions. We are all aware that the history determines 85% of both diagnosis and treatment decisions, particularly in primary care where x-rays or lab tests are not often needed.

But history in EHR notes is often idiosyncratic, entered hours after the visit by the clinician, and does not include the information needed to define diagnostic or guideline criteria, even if the clinician knows and considered those criteria. EHR templates are presented blank and are onerous and time consuming for clinicians. In addition, individual patient barriers to care, preferences, and environmental or subjective concerns are infrequently documented even though they may make the biggest difference to adherence and/or outcomes.

Notes made from voice to text digital AI translation of the encounter (e.g. Nuance DAX) are even less likely to include diagnostic criteria as it would be inappropriate to speak these. To use EHR history data to train AI and to test efficacy of care using variations of guidelines, guideline-related data is needed from online patient entries in questionnaires that are transformed to fill in templates along with some structured choices for clinician entries forming visit notes (e.g. CHADIS). New apps to facilitate clinician documentation of guidelines (e.g. AvoMD) could streamline visits as well as help document guideline criteria. The resulting combination of guideline-relevant patient histories and objective data to test and iteratively refine guidelines will allow a process known as a “Learning Health System.”

Technology to collect this kind of data can allow for the aspirational American Academy of Pediatrics CHILD Registry to approach this goal. Population-level data can provide surveillance for illness, toxins, effects of climate change, social drivers of health, and even effects of technologies themselves such as social media and remote learning so that we can attempt to make the best choices for the future.

Clinicians, staff, and patients will need to develop trust in technology as it infiltrates all aspects of health care. Professionals need both evidence and experience to trust a technology, which takes time and effort. Disinformation in the media may reduce trust or evoke unwarranted trust, as we have all seen regarding vaccines. Clear and coherent public health messaging can help but is no longer a panacea for developing trust in health care. Our nonjudgmental listening and informed opinions are needed more than ever.

The biggest issues for new technology are likely to be the need for workflow adjustments, changing our habit patterns, training, and cost/benefit analyses. With today’s high staff churn, confusion and even chaos can ensue when adopting new technology.

Staff need to be part of the selection process, if at all possible, and discuss how roles and flow will need to change. Having one staff member be a champion and expert for new tech can move adoption to a shared process rather than imposing “one more thing.” It is crucial to discuss the benefits for patients and staff even if the change is required. Sometimes cost savings can include a bonus for staff or free group lunches. Providing a certificate of achievement or title promotion for mastering new tech may be appropriate. Giving some time off from other tasks to learn new workflows can reduce resistance rather than just adding it on to a regular workload. Office “huddles” going forward can include examples of benefits staff have observed or heard about from the adoption. There are quality improvement processes that engage the team — some that earn MOC-4 or CEU credits — that apply to making workflow changes and measuring them iteratively.

If technology takes over important aspects of the work of medical professionals, even if it is faster and/or more accurate, it may degrade clinical observational, interactional, and decision-making skills through lack of use. It may also remove the sense of self-efficacy that motivates professionals to endure onerous training and desire to enter the field. Using technology may reduce empathetic interactions that are basic to humanistic motivation, work satisfaction, and even community respect. Moral injury is already rampant in medicine from restrictions on freedom to do what we see as important for our patients. Technology has great potential and already is enhancing our ability to provide the best care for patients but the risks need to be watched for and ameliorated.

When technology automates comprehensive visit documentation that highlights priority and risk areas from patient input and individualizes decision support, it can facilitate the personalized care that we and our patients want to experience. We must not be so awed, intrigued, or wary of new technology to miss its benefits nor give up our good clinical judgment about the technology or about our patients.

Dr. Howard is assistant professor of pediatrics at The Johns Hopkins University School of Medicine, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.

We have all been using technology in our primary care practices for a long time but newer formats have been emerging so fast that our minds, much less our staff’s minds, may be spinning.

Our old friend the telephone, a time-soaking nemesis for scheduling, checking coverage, questions calls, prescribing, quick consults, and follow-up is being replaced by EHR portals and SMS for messaging (e.g. DoctorConnect, SimplePractice), drop-in televisits and patient education links on our websites (e.g. Schmitt Pediatric Care, Remedy Connect), and chatbots for scheduling (e.g. CHEC-UP). While time is saved, what is lost may be hearing the subtext of anxiety or misperceptions in parents’ voices that would change our advice and the empathetic human connection in conversations with our patients. A hybrid approach may be better.

Howard_Barbara_J_BALT_2022_web.jpg

The paper appointment book has been replaced by scheduling systems sometimes lacking in flexibility for double booking, sibling visits, and variable length or extremely valuable multi-professional visits. Allowing patients to book their own visits may place complex problems in inappropriate slots, so only allowing online requests for visits is safer. On the other hand, many of us can now squeeze in “same day” televisits (e.g. Blueberry Pediatrics), sometimes from outside our practice (e.g., zocdoc), to increase payments and even entice new patients to enroll.

Amazing advances in technology are being made in specialty care such as genetic modifications (CRISPR), immunotherapies (mRNA vaccines and AI drug design), robot-assisted surgery, and 3-D printing of body parts and prosthetics. Technology as treatment such as transcranial magnetic stimulation and vagal stimulation are finding value in psychiatry.

But beside being aware of and able to order such specialty technologies, innovations are now extending our senses in primary care such as amplified or visual stethoscopes, bedside ultrasound (e.g. Butterfly), remote visualization (oto-, endo-)scopes, photographic vision screens (e.g. iScreen) for skin lesion (VisualDx) and genetic syndrome facial recognition. We need to be sure that technologies are tested and calibrated for children and different racial groups and genders to provide safe and equitable care. Early adoption may not always be the best approach. Costs of technology, as usual, may limit access to these advanced care aids especially, as usual, in practices serving low income and rural communities.

Patients, especially younger parents and youth, now expect to participate and can directly benefit from technology as part of their health care. Validated parent or self-report screens (e.g. EHRs, Phreesia) can detect important issues early for more effective intervention. Such questionnaires typically provide a pass/fail result or score, but other delivery systems (e.g. CHADIS) include interpretation, assist patients/parents in setting visit priorities and health goals, and even chain results of one questionnaire to secondary screens to hone in on problems, sometimes obviating a time-consuming second visit. Patient-completed comprehensive questionnaires (e.g. Well Visit Planner, CHADIS) allow us time to use our skills to focus on concerns, education, and management rather than asking myriad routine questions. Some (e.g. CHADIS) even create visit documentation reducing our “pajama time” write ups (and burnout); automate repeated online measures to track progress; and use questionnaire results to trigger related patient-specific education and resources rather than the often-ignored generic EHR handouts.

Digital therapeutics such as apps for anxiety (e.g. Calm), depression (e.g. SparkRx, Cass), weight control (e.g. Noom, Lose it), fitness, or sleep tracking (e.g. Whoop) help educate and, in some cases, provide real-time feedback to personalize discovery of contributing factors in order to maintain motivation for positive health behavior change. Some video games improve ADHD symptoms (e.g. EndeavorRX). Virtual reality scenarios have been shown to desensitize those with PTSD and social anxiety or teach social skills to children with autism.

Systems that trigger resource listings (including apps) from screen results can help, but now with over 10,000 apps for mental health, knowing what to recommend for what conditions is a challenge for which ratings (e.g. MINDapps.org) can help. With few product reps visiting to tell us what’s new, we need to read critically about innovations, search the web, subscribe to the AAP SOAPM LISTSERV, visit exhibitors at professional meetings, and talk with peers.

All the digital data collected from health care technology, if assembled with privacy constraints and analyzed with advanced statistical methods, have the possibility, with or without inclusion of genomic data, to allow for more accurate diagnostic and treatment decision support. While AI can search widely for patterns, it needs to be “trained” on appropriate data to make correct conclusions. We are all aware that the history determines 85% of both diagnosis and treatment decisions, particularly in primary care where x-rays or lab tests are not often needed.

But history in EHR notes is often idiosyncratic, entered hours after the visit by the clinician, and does not include the information needed to define diagnostic or guideline criteria, even if the clinician knows and considered those criteria. EHR templates are presented blank and are onerous and time consuming for clinicians. In addition, individual patient barriers to care, preferences, and environmental or subjective concerns are infrequently documented even though they may make the biggest difference to adherence and/or outcomes.

Notes made from voice to text digital AI translation of the encounter (e.g. Nuance DAX) are even less likely to include diagnostic criteria as it would be inappropriate to speak these. To use EHR history data to train AI and to test efficacy of care using variations of guidelines, guideline-related data is needed from online patient entries in questionnaires that are transformed to fill in templates along with some structured choices for clinician entries forming visit notes (e.g. CHADIS). New apps to facilitate clinician documentation of guidelines (e.g. AvoMD) could streamline visits as well as help document guideline criteria. The resulting combination of guideline-relevant patient histories and objective data to test and iteratively refine guidelines will allow a process known as a “Learning Health System.”

Technology to collect this kind of data can allow for the aspirational American Academy of Pediatrics CHILD Registry to approach this goal. Population-level data can provide surveillance for illness, toxins, effects of climate change, social drivers of health, and even effects of technologies themselves such as social media and remote learning so that we can attempt to make the best choices for the future.

Clinicians, staff, and patients will need to develop trust in technology as it infiltrates all aspects of health care. Professionals need both evidence and experience to trust a technology, which takes time and effort. Disinformation in the media may reduce trust or evoke unwarranted trust, as we have all seen regarding vaccines. Clear and coherent public health messaging can help but is no longer a panacea for developing trust in health care. Our nonjudgmental listening and informed opinions are needed more than ever.

The biggest issues for new technology are likely to be the need for workflow adjustments, changing our habit patterns, training, and cost/benefit analyses. With today’s high staff churn, confusion and even chaos can ensue when adopting new technology.

Staff need to be part of the selection process, if at all possible, and discuss how roles and flow will need to change. Having one staff member be a champion and expert for new tech can move adoption to a shared process rather than imposing “one more thing.” It is crucial to discuss the benefits for patients and staff even if the change is required. Sometimes cost savings can include a bonus for staff or free group lunches. Providing a certificate of achievement or title promotion for mastering new tech may be appropriate. Giving some time off from other tasks to learn new workflows can reduce resistance rather than just adding it on to a regular workload. Office “huddles” going forward can include examples of benefits staff have observed or heard about from the adoption. There are quality improvement processes that engage the team — some that earn MOC-4 or CEU credits — that apply to making workflow changes and measuring them iteratively.

If technology takes over important aspects of the work of medical professionals, even if it is faster and/or more accurate, it may degrade clinical observational, interactional, and decision-making skills through lack of use. It may also remove the sense of self-efficacy that motivates professionals to endure onerous training and desire to enter the field. Using technology may reduce empathetic interactions that are basic to humanistic motivation, work satisfaction, and even community respect. Moral injury is already rampant in medicine from restrictions on freedom to do what we see as important for our patients. Technology has great potential and already is enhancing our ability to provide the best care for patients but the risks need to be watched for and ameliorated.

When technology automates comprehensive visit documentation that highlights priority and risk areas from patient input and individualizes decision support, it can facilitate the personalized care that we and our patients want to experience. We must not be so awed, intrigued, or wary of new technology to miss its benefits nor give up our good clinical judgment about the technology or about our patients.

Dr. Howard is assistant professor of pediatrics at The Johns Hopkins University School of Medicine, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.

We have all been using technology in our primary care practices for a long time but newer formats have been emerging so fast that our minds, much less our staff’s minds, may be spinning.

Our old friend the telephone, a time-soaking nemesis for scheduling, checking coverage, questions calls, prescribing, quick consults, and follow-up is being replaced by EHR portals and SMS for messaging (e.g. DoctorConnect, SimplePractice), drop-in televisits and patient education links on our websites (e.g. Schmitt Pediatric Care, Remedy Connect), and chatbots for scheduling (e.g. CHEC-UP). While time is saved, what is lost may be hearing the subtext of anxiety or misperceptions in parents’ voices that would change our advice and the empathetic human connection in conversations with our patients. A hybrid approach may be better.

Howard_Barbara_J_BALT_2022_web.jpg

The paper appointment book has been replaced by scheduling systems sometimes lacking in flexibility for double booking, sibling visits, and variable length or extremely valuable multi-professional visits. Allowing patients to book their own visits may place complex problems in inappropriate slots, so only allowing online requests for visits is safer. On the other hand, many of us can now squeeze in “same day” televisits (e.g. Blueberry Pediatrics), sometimes from outside our practice (e.g., zocdoc), to increase payments and even entice new patients to enroll.

Amazing advances in technology are being made in specialty care such as genetic modifications (CRISPR), immunotherapies (mRNA vaccines and AI drug design), robot-assisted surgery, and 3-D printing of body parts and prosthetics. Technology as treatment such as transcranial magnetic stimulation and vagal stimulation are finding value in psychiatry.

But beside being aware of and able to order such specialty technologies, innovations are now extending our senses in primary care such as amplified or visual stethoscopes, bedside ultrasound (e.g. Butterfly), remote visualization (oto-, endo-)scopes, photographic vision screens (e.g. iScreen) for skin lesion (VisualDx) and genetic syndrome facial recognition. We need to be sure that technologies are tested and calibrated for children and different racial groups and genders to provide safe and equitable care. Early adoption may not always be the best approach. Costs of technology, as usual, may limit access to these advanced care aids especially, as usual, in practices serving low income and rural communities.

Patients, especially younger parents and youth, now expect to participate and can directly benefit from technology as part of their health care. Validated parent or self-report screens (e.g. EHRs, Phreesia) can detect important issues early for more effective intervention. Such questionnaires typically provide a pass/fail result or score, but other delivery systems (e.g. CHADIS) include interpretation, assist patients/parents in setting visit priorities and health goals, and even chain results of one questionnaire to secondary screens to hone in on problems, sometimes obviating a time-consuming second visit. Patient-completed comprehensive questionnaires (e.g. Well Visit Planner, CHADIS) allow us time to use our skills to focus on concerns, education, and management rather than asking myriad routine questions. Some (e.g. CHADIS) even create visit documentation reducing our “pajama time” write ups (and burnout); automate repeated online measures to track progress; and use questionnaire results to trigger related patient-specific education and resources rather than the often-ignored generic EHR handouts.

Digital therapeutics such as apps for anxiety (e.g. Calm), depression (e.g. SparkRx, Cass), weight control (e.g. Noom, Lose it), fitness, or sleep tracking (e.g. Whoop) help educate and, in some cases, provide real-time feedback to personalize discovery of contributing factors in order to maintain motivation for positive health behavior change. Some video games improve ADHD symptoms (e.g. EndeavorRX). Virtual reality scenarios have been shown to desensitize those with PTSD and social anxiety or teach social skills to children with autism.

Systems that trigger resource listings (including apps) from screen results can help, but now with over 10,000 apps for mental health, knowing what to recommend for what conditions is a challenge for which ratings (e.g. MINDapps.org) can help. With few product reps visiting to tell us what’s new, we need to read critically about innovations, search the web, subscribe to the AAP SOAPM LISTSERV, visit exhibitors at professional meetings, and talk with peers.

All the digital data collected from health care technology, if assembled with privacy constraints and analyzed with advanced statistical methods, have the possibility, with or without inclusion of genomic data, to allow for more accurate diagnostic and treatment decision support. While AI can search widely for patterns, it needs to be “trained” on appropriate data to make correct conclusions. We are all aware that the history determines 85% of both diagnosis and treatment decisions, particularly in primary care where x-rays or lab tests are not often needed.

But history in EHR notes is often idiosyncratic, entered hours after the visit by the clinician, and does not include the information needed to define diagnostic or guideline criteria, even if the clinician knows and considered those criteria. EHR templates are presented blank and are onerous and time consuming for clinicians. In addition, individual patient barriers to care, preferences, and environmental or subjective concerns are infrequently documented even though they may make the biggest difference to adherence and/or outcomes.

Notes made from voice to text digital AI translation of the encounter (e.g. Nuance DAX) are even less likely to include diagnostic criteria as it would be inappropriate to speak these. To use EHR history data to train AI and to test efficacy of care using variations of guidelines, guideline-related data is needed from online patient entries in questionnaires that are transformed to fill in templates along with some structured choices for clinician entries forming visit notes (e.g. CHADIS). New apps to facilitate clinician documentation of guidelines (e.g. AvoMD) could streamline visits as well as help document guideline criteria. The resulting combination of guideline-relevant patient histories and objective data to test and iteratively refine guidelines will allow a process known as a “Learning Health System.”

Technology to collect this kind of data can allow for the aspirational American Academy of Pediatrics CHILD Registry to approach this goal. Population-level data can provide surveillance for illness, toxins, effects of climate change, social drivers of health, and even effects of technologies themselves such as social media and remote learning so that we can attempt to make the best choices for the future.

Clinicians, staff, and patients will need to develop trust in technology as it infiltrates all aspects of health care. Professionals need both evidence and experience to trust a technology, which takes time and effort. Disinformation in the media may reduce trust or evoke unwarranted trust, as we have all seen regarding vaccines. Clear and coherent public health messaging can help but is no longer a panacea for developing trust in health care. Our nonjudgmental listening and informed opinions are needed more than ever.

The biggest issues for new technology are likely to be the need for workflow adjustments, changing our habit patterns, training, and cost/benefit analyses. With today’s high staff churn, confusion and even chaos can ensue when adopting new technology.

Staff need to be part of the selection process, if at all possible, and discuss how roles and flow will need to change. Having one staff member be a champion and expert for new tech can move adoption to a shared process rather than imposing “one more thing.” It is crucial to discuss the benefits for patients and staff even if the change is required. Sometimes cost savings can include a bonus for staff or free group lunches. Providing a certificate of achievement or title promotion for mastering new tech may be appropriate. Giving some time off from other tasks to learn new workflows can reduce resistance rather than just adding it on to a regular workload. Office “huddles” going forward can include examples of benefits staff have observed or heard about from the adoption. There are quality improvement processes that engage the team — some that earn MOC-4 or CEU credits — that apply to making workflow changes and measuring them iteratively.

If technology takes over important aspects of the work of medical professionals, even if it is faster and/or more accurate, it may degrade clinical observational, interactional, and decision-making skills through lack of use. It may also remove the sense of self-efficacy that motivates professionals to endure onerous training and desire to enter the field. Using technology may reduce empathetic interactions that are basic to humanistic motivation, work satisfaction, and even community respect. Moral injury is already rampant in medicine from restrictions on freedom to do what we see as important for our patients. Technology has great potential and already is enhancing our ability to provide the best care for patients but the risks need to be watched for and ameliorated.

When technology automates comprehensive visit documentation that highlights priority and risk areas from patient input and individualizes decision support, it can facilitate the personalized care that we and our patients want to experience. We must not be so awed, intrigued, or wary of new technology to miss its benefits nor give up our good clinical judgment about the technology or about our patients.

Dr. Howard is assistant professor of pediatrics at The Johns Hopkins University School of Medicine, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.

Checking on the well-being of mothers is one of the important acknowledged aspects of primary pediatric care. “How are you doing?” directed to the child’s mother has long been considered an appropriate question. The AAP recommends several checks in the Bright Futures Guidelines, including conducting several formal screens for depression and asking about “getting time alone with your partner” as well as other supports.

But I have recently become aware of new data that changes my ideas about what we pediatricians need to be doing as part of our care for children and their families, especially in the first year: Considering the risks to the mother of dying.

Howard_Barbara_J_BALT_2022_web.jpg

Maternal mortality increased by 26.6% from 2000 to 2014 across the United States such that it is higher now than it was for our own mothers. The U.S. now has the highest rates of maternal mortality among high-income nations, especially for Black, American Indian, or Alaska Native women, those of lower socioeconomic status, and those under 18 or over 35 years old.

You may be thinking, well, that is an issue for ob.gyns. Indeed, the most common reasons for maternal death are cardiovascular: hemorrhage, hypertensive disorders, deep vein thrombosis, and stroke, all usually occurring at or in the first week after birth. You may have heard about sudden unexpected heart failure from postpartum cardiomyopathy, although rare (1 in 1,000-4,000), presenting from 1 month pre birth to 5 months post delivery, which is when we may be the main clinicians seeing the mother, not the ob.gyns. This can be easily missed since it presents with shortness of breath and decreased exercise tolerance, fatigue, palpitations, and/or leg swelling. Serious eclampsia may have only symptoms of headache or abdominal pain. All of these may easily be mistaken for lingering pregnancy symptoms. But in higher income countries, such as the U.S., 38% of maternal deaths occur from 8 to 42 days after birth, the period for fatal infections as well as cardiac complications. Elevated risk for all of these causes of mortality include Black race, obesity, tobacco use, congenital heart disease, and being older than 40.

As pediatric providers, we may see mothers along with their infants as newborns in the hospital, at day 2, at 2 weeks, or even at 1-2 months after birth, potentially before their one recommended postnatal obstetric visit at 3-8 weeks. Asking the mother how she is feeling at those times should not just be a social nicety but rather an additional check for serious postnatal complications.
 

Additional concerns

But wait, it gets worse.

Did you know that the leading cause of maternal death from pregnancy up to 1 year after a birth is homicide?

Maternal perinatal mortality figures have not usually included “perinatal-associated” deaths, a maternal death attributable to a condition that is unaffected by the pregnancy and occurring within 1 year of delivery (that I will cite as perinatal henceforth). While half of maternal deaths occur during pregnancy, another half occur in the year following. There were 3.62 homicides per 100,000 live births among females who were pregnant or within 1 year postpartum, 16% more than for similarly aged nonpregnant and nonpostpartum women (3.12 deaths/100,000 population, P < .05). Homicides made up 8.4% of reported perinatal maternal deaths from all causes, with a rate of 1.7 per 100,000 live births, twice the rate of any one of the other leading causes noted above. Black women had seven times the risk of perinatal homicide as that of White women. Females under 20, many of them our own pediatric patients, had a greater than six times higher risk and those aged 20-24 had a 65% higher risk of pregnancy-associated homicide across race and ethnic groups. Homicide is most likely before 21 weeks of pregnancy, decreases in the third trimester, but increases again after birth. Two-thirds of pregnancy-associated homicide deaths occurred in the home, with the perpetrator a current or prior partner (> 59%, with 98% being male), 45%-50% were associated with reported intimate partner violence (IPV), and the most common method was a firearm (55%). Often the same women had histories of substance abuse, serious mental illness, and/or prior IPV, all risk factors for pregnancy-associated deaths, including from homicide.

Homicide? “Not the mothers in my practice,” you may say, but, if not homicide, drug-related deaths (3.68 per 100,000 person-years) and suicide (1.42 per 100,000 person-years) together comprise 18% of all maternal deaths. Non-Hispanic White women, Medicaid-insured women, and women residing in smaller cities were especially likely to die from drugs or suicide. More than half (54.3%) of perinatal suicides involve intimate partner conflict, which increases the risk ninefold. Perinatal mood disorders, affecting up to 15% of pregnant and postpartum U.S. women, is also a risk factor in substance abuse, opioid overdose death, and suicide.

And substance use has gotten more dangerous with the increase in fentanyl lacing. Pregnancy-associated deaths (4%-10% of deaths) involving opioids more than doubled between 2007 and 2016, and, although the rates are higher for Black women, the increase has been greater for non-Hispanic White women. Two-thirds of those deaths occur between 6 and 12 months postpartum, on our watch. Although many women decrease substance use during pregnancy, they may fall back into substance use (rates increase 4 times by 7-12 months after delivery) and not continue to receive treatment. Although pharmacotherapy (e.g., methadone, buprenorphine treatment) is the current standard of care for opioid use disorder (OUD) during pregnancy, nearly half receiving treatment in publicly funded centers are not receiving these medications and others may lose insurance or access to pregnancy-related treatment programs after delivery, increasing risk of relapse. Stigma, and punitive or discriminatory approaches to pregnant women with OUD (e.g., jail, removal of children) can dissuade them from participating in treatment, increasing overdose risk.

It is important to note that in more than half of the 41 deaths from violent trauma in one study (including 22 homicides), obstetrical providers knew of or suspected IPV. Also, the vast majority (74%) of those who died by drugs or suicide had made one or more emergency department or hospital visit between their delivery and death, and 39% had made three or more visits. Without knowing if anything was done in those cases, we also know that, in addition to thorough, compassionate providers, there is sometimes segmentation of responsibility, insensitivity, discrimination, racism, stigma, inequity, lack of resources, lack of access, lack of payment mechanisms, legal issues for immigrants, time constraints, and other systemic deficits that may hinder effective care for these and subsequent women.
 

Awareness and action

What should we, who are primary care pediatric providers, do about these threats to the mothers and pregnant young women we care for? Clearly, their children, our main patients, would be terribly and permanently hurt by harm coming to their mothers – the extreme adverse childhood experiences and social determinants of health to which we are already committed.

I hope this article will help alert pediatric providers to what is being published, mainly as women’s health and public health issues.

First, we need awareness of the physical symptoms that may come up in our interactions with pregnant and postpartum women so that we can educate them and expedite any indicated emergency care.

Next, we need to expand our routine screening of mothers and pregnant women from just the most impactful social determinants of health (including depression, substance use, and IPV) to include anxiety, past suicide attempts and current suicidal ideation, and the presence of firearms, early and repeatedly in the first year of the child’s life. Adults and teens are more likely to disclose risk for sensitive issues through questionnaires than through interviews, perhaps even more so when the identified patient is their child rather than themselves. Any screen can have false negatives, so asking directly when risk is suspected is important. The reason for screening could be framed as caring for the caregiver who is the most important person for the child. It could be accompanied by acknowledging that pregnancy and the first year of life can be difficult for mothers and their partners and that we want to support them and connect them to resources, if needed. When substance use disorder is acknowledged, we should prescribe and teach about Narcan for overdose. When there is IPV, we should discuss firearm removal/locking as well as counseling on a personal safety plan.

Working as part of an on-site or virtual team that includes professionals who know about community resources and can coordinate care is essential, in addition to educating about 211 for services and 988 for suicide risk.

Finally, we can advocate and vote for programs, people, and laws that support and safeguard women and families, address substance use, and reduce access to firearms.
 

Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS (www.CHADIS.com). She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.

Checking on the well-being of mothers is one of the important acknowledged aspects of primary pediatric care. “How are you doing?” directed to the child’s mother has long been considered an appropriate question. The AAP recommends several checks in the Bright Futures Guidelines, including conducting several formal screens for depression and asking about “getting time alone with your partner” as well as other supports.

But I have recently become aware of new data that changes my ideas about what we pediatricians need to be doing as part of our care for children and their families, especially in the first year: Considering the risks to the mother of dying.

Howard_Barbara_J_BALT_2022_web.jpg

Maternal mortality increased by 26.6% from 2000 to 2014 across the United States such that it is higher now than it was for our own mothers. The U.S. now has the highest rates of maternal mortality among high-income nations, especially for Black, American Indian, or Alaska Native women, those of lower socioeconomic status, and those under 18 or over 35 years old.

You may be thinking, well, that is an issue for ob.gyns. Indeed, the most common reasons for maternal death are cardiovascular: hemorrhage, hypertensive disorders, deep vein thrombosis, and stroke, all usually occurring at or in the first week after birth. You may have heard about sudden unexpected heart failure from postpartum cardiomyopathy, although rare (1 in 1,000-4,000), presenting from 1 month pre birth to 5 months post delivery, which is when we may be the main clinicians seeing the mother, not the ob.gyns. This can be easily missed since it presents with shortness of breath and decreased exercise tolerance, fatigue, palpitations, and/or leg swelling. Serious eclampsia may have only symptoms of headache or abdominal pain. All of these may easily be mistaken for lingering pregnancy symptoms. But in higher income countries, such as the U.S., 38% of maternal deaths occur from 8 to 42 days after birth, the period for fatal infections as well as cardiac complications. Elevated risk for all of these causes of mortality include Black race, obesity, tobacco use, congenital heart disease, and being older than 40.

As pediatric providers, we may see mothers along with their infants as newborns in the hospital, at day 2, at 2 weeks, or even at 1-2 months after birth, potentially before their one recommended postnatal obstetric visit at 3-8 weeks. Asking the mother how she is feeling at those times should not just be a social nicety but rather an additional check for serious postnatal complications.
 

Additional concerns

But wait, it gets worse.

Did you know that the leading cause of maternal death from pregnancy up to 1 year after a birth is homicide?

Maternal perinatal mortality figures have not usually included “perinatal-associated” deaths, a maternal death attributable to a condition that is unaffected by the pregnancy and occurring within 1 year of delivery (that I will cite as perinatal henceforth). While half of maternal deaths occur during pregnancy, another half occur in the year following. There were 3.62 homicides per 100,000 live births among females who were pregnant or within 1 year postpartum, 16% more than for similarly aged nonpregnant and nonpostpartum women (3.12 deaths/100,000 population, P < .05). Homicides made up 8.4% of reported perinatal maternal deaths from all causes, with a rate of 1.7 per 100,000 live births, twice the rate of any one of the other leading causes noted above. Black women had seven times the risk of perinatal homicide as that of White women. Females under 20, many of them our own pediatric patients, had a greater than six times higher risk and those aged 20-24 had a 65% higher risk of pregnancy-associated homicide across race and ethnic groups. Homicide is most likely before 21 weeks of pregnancy, decreases in the third trimester, but increases again after birth. Two-thirds of pregnancy-associated homicide deaths occurred in the home, with the perpetrator a current or prior partner (> 59%, with 98% being male), 45%-50% were associated with reported intimate partner violence (IPV), and the most common method was a firearm (55%). Often the same women had histories of substance abuse, serious mental illness, and/or prior IPV, all risk factors for pregnancy-associated deaths, including from homicide.

Homicide? “Not the mothers in my practice,” you may say, but, if not homicide, drug-related deaths (3.68 per 100,000 person-years) and suicide (1.42 per 100,000 person-years) together comprise 18% of all maternal deaths. Non-Hispanic White women, Medicaid-insured women, and women residing in smaller cities were especially likely to die from drugs or suicide. More than half (54.3%) of perinatal suicides involve intimate partner conflict, which increases the risk ninefold. Perinatal mood disorders, affecting up to 15% of pregnant and postpartum U.S. women, is also a risk factor in substance abuse, opioid overdose death, and suicide.

And substance use has gotten more dangerous with the increase in fentanyl lacing. Pregnancy-associated deaths (4%-10% of deaths) involving opioids more than doubled between 2007 and 2016, and, although the rates are higher for Black women, the increase has been greater for non-Hispanic White women. Two-thirds of those deaths occur between 6 and 12 months postpartum, on our watch. Although many women decrease substance use during pregnancy, they may fall back into substance use (rates increase 4 times by 7-12 months after delivery) and not continue to receive treatment. Although pharmacotherapy (e.g., methadone, buprenorphine treatment) is the current standard of care for opioid use disorder (OUD) during pregnancy, nearly half receiving treatment in publicly funded centers are not receiving these medications and others may lose insurance or access to pregnancy-related treatment programs after delivery, increasing risk of relapse. Stigma, and punitive or discriminatory approaches to pregnant women with OUD (e.g., jail, removal of children) can dissuade them from participating in treatment, increasing overdose risk.

It is important to note that in more than half of the 41 deaths from violent trauma in one study (including 22 homicides), obstetrical providers knew of or suspected IPV. Also, the vast majority (74%) of those who died by drugs or suicide had made one or more emergency department or hospital visit between their delivery and death, and 39% had made three or more visits. Without knowing if anything was done in those cases, we also know that, in addition to thorough, compassionate providers, there is sometimes segmentation of responsibility, insensitivity, discrimination, racism, stigma, inequity, lack of resources, lack of access, lack of payment mechanisms, legal issues for immigrants, time constraints, and other systemic deficits that may hinder effective care for these and subsequent women.
 

Awareness and action

What should we, who are primary care pediatric providers, do about these threats to the mothers and pregnant young women we care for? Clearly, their children, our main patients, would be terribly and permanently hurt by harm coming to their mothers – the extreme adverse childhood experiences and social determinants of health to which we are already committed.

I hope this article will help alert pediatric providers to what is being published, mainly as women’s health and public health issues.

First, we need awareness of the physical symptoms that may come up in our interactions with pregnant and postpartum women so that we can educate them and expedite any indicated emergency care.

Next, we need to expand our routine screening of mothers and pregnant women from just the most impactful social determinants of health (including depression, substance use, and IPV) to include anxiety, past suicide attempts and current suicidal ideation, and the presence of firearms, early and repeatedly in the first year of the child’s life. Adults and teens are more likely to disclose risk for sensitive issues through questionnaires than through interviews, perhaps even more so when the identified patient is their child rather than themselves. Any screen can have false negatives, so asking directly when risk is suspected is important. The reason for screening could be framed as caring for the caregiver who is the most important person for the child. It could be accompanied by acknowledging that pregnancy and the first year of life can be difficult for mothers and their partners and that we want to support them and connect them to resources, if needed. When substance use disorder is acknowledged, we should prescribe and teach about Narcan for overdose. When there is IPV, we should discuss firearm removal/locking as well as counseling on a personal safety plan.

Working as part of an on-site or virtual team that includes professionals who know about community resources and can coordinate care is essential, in addition to educating about 211 for services and 988 for suicide risk.

Finally, we can advocate and vote for programs, people, and laws that support and safeguard women and families, address substance use, and reduce access to firearms.
 

Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS (www.CHADIS.com). She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.

Checking on the well-being of mothers is one of the important acknowledged aspects of primary pediatric care. “How are you doing?” directed to the child’s mother has long been considered an appropriate question. The AAP recommends several checks in the Bright Futures Guidelines, including conducting several formal screens for depression and asking about “getting time alone with your partner” as well as other supports.

But I have recently become aware of new data that changes my ideas about what we pediatricians need to be doing as part of our care for children and their families, especially in the first year: Considering the risks to the mother of dying.

Howard_Barbara_J_BALT_2022_web.jpg

Maternal mortality increased by 26.6% from 2000 to 2014 across the United States such that it is higher now than it was for our own mothers. The U.S. now has the highest rates of maternal mortality among high-income nations, especially for Black, American Indian, or Alaska Native women, those of lower socioeconomic status, and those under 18 or over 35 years old.

You may be thinking, well, that is an issue for ob.gyns. Indeed, the most common reasons for maternal death are cardiovascular: hemorrhage, hypertensive disorders, deep vein thrombosis, and stroke, all usually occurring at or in the first week after birth. You may have heard about sudden unexpected heart failure from postpartum cardiomyopathy, although rare (1 in 1,000-4,000), presenting from 1 month pre birth to 5 months post delivery, which is when we may be the main clinicians seeing the mother, not the ob.gyns. This can be easily missed since it presents with shortness of breath and decreased exercise tolerance, fatigue, palpitations, and/or leg swelling. Serious eclampsia may have only symptoms of headache or abdominal pain. All of these may easily be mistaken for lingering pregnancy symptoms. But in higher income countries, such as the U.S., 38% of maternal deaths occur from 8 to 42 days after birth, the period for fatal infections as well as cardiac complications. Elevated risk for all of these causes of mortality include Black race, obesity, tobacco use, congenital heart disease, and being older than 40.

As pediatric providers, we may see mothers along with their infants as newborns in the hospital, at day 2, at 2 weeks, or even at 1-2 months after birth, potentially before their one recommended postnatal obstetric visit at 3-8 weeks. Asking the mother how she is feeling at those times should not just be a social nicety but rather an additional check for serious postnatal complications.
 

Additional concerns

But wait, it gets worse.

Did you know that the leading cause of maternal death from pregnancy up to 1 year after a birth is homicide?

Maternal perinatal mortality figures have not usually included “perinatal-associated” deaths, a maternal death attributable to a condition that is unaffected by the pregnancy and occurring within 1 year of delivery (that I will cite as perinatal henceforth). While half of maternal deaths occur during pregnancy, another half occur in the year following. There were 3.62 homicides per 100,000 live births among females who were pregnant or within 1 year postpartum, 16% more than for similarly aged nonpregnant and nonpostpartum women (3.12 deaths/100,000 population, P < .05). Homicides made up 8.4% of reported perinatal maternal deaths from all causes, with a rate of 1.7 per 100,000 live births, twice the rate of any one of the other leading causes noted above. Black women had seven times the risk of perinatal homicide as that of White women. Females under 20, many of them our own pediatric patients, had a greater than six times higher risk and those aged 20-24 had a 65% higher risk of pregnancy-associated homicide across race and ethnic groups. Homicide is most likely before 21 weeks of pregnancy, decreases in the third trimester, but increases again after birth. Two-thirds of pregnancy-associated homicide deaths occurred in the home, with the perpetrator a current or prior partner (> 59%, with 98% being male), 45%-50% were associated with reported intimate partner violence (IPV), and the most common method was a firearm (55%). Often the same women had histories of substance abuse, serious mental illness, and/or prior IPV, all risk factors for pregnancy-associated deaths, including from homicide.

Homicide? “Not the mothers in my practice,” you may say, but, if not homicide, drug-related deaths (3.68 per 100,000 person-years) and suicide (1.42 per 100,000 person-years) together comprise 18% of all maternal deaths. Non-Hispanic White women, Medicaid-insured women, and women residing in smaller cities were especially likely to die from drugs or suicide. More than half (54.3%) of perinatal suicides involve intimate partner conflict, which increases the risk ninefold. Perinatal mood disorders, affecting up to 15% of pregnant and postpartum U.S. women, is also a risk factor in substance abuse, opioid overdose death, and suicide.

And substance use has gotten more dangerous with the increase in fentanyl lacing. Pregnancy-associated deaths (4%-10% of deaths) involving opioids more than doubled between 2007 and 2016, and, although the rates are higher for Black women, the increase has been greater for non-Hispanic White women. Two-thirds of those deaths occur between 6 and 12 months postpartum, on our watch. Although many women decrease substance use during pregnancy, they may fall back into substance use (rates increase 4 times by 7-12 months after delivery) and not continue to receive treatment. Although pharmacotherapy (e.g., methadone, buprenorphine treatment) is the current standard of care for opioid use disorder (OUD) during pregnancy, nearly half receiving treatment in publicly funded centers are not receiving these medications and others may lose insurance or access to pregnancy-related treatment programs after delivery, increasing risk of relapse. Stigma, and punitive or discriminatory approaches to pregnant women with OUD (e.g., jail, removal of children) can dissuade them from participating in treatment, increasing overdose risk.

It is important to note that in more than half of the 41 deaths from violent trauma in one study (including 22 homicides), obstetrical providers knew of or suspected IPV. Also, the vast majority (74%) of those who died by drugs or suicide had made one or more emergency department or hospital visit between their delivery and death, and 39% had made three or more visits. Without knowing if anything was done in those cases, we also know that, in addition to thorough, compassionate providers, there is sometimes segmentation of responsibility, insensitivity, discrimination, racism, stigma, inequity, lack of resources, lack of access, lack of payment mechanisms, legal issues for immigrants, time constraints, and other systemic deficits that may hinder effective care for these and subsequent women.
 

Awareness and action

What should we, who are primary care pediatric providers, do about these threats to the mothers and pregnant young women we care for? Clearly, their children, our main patients, would be terribly and permanently hurt by harm coming to their mothers – the extreme adverse childhood experiences and social determinants of health to which we are already committed.

I hope this article will help alert pediatric providers to what is being published, mainly as women’s health and public health issues.

First, we need awareness of the physical symptoms that may come up in our interactions with pregnant and postpartum women so that we can educate them and expedite any indicated emergency care.

Next, we need to expand our routine screening of mothers and pregnant women from just the most impactful social determinants of health (including depression, substance use, and IPV) to include anxiety, past suicide attempts and current suicidal ideation, and the presence of firearms, early and repeatedly in the first year of the child’s life. Adults and teens are more likely to disclose risk for sensitive issues through questionnaires than through interviews, perhaps even more so when the identified patient is their child rather than themselves. Any screen can have false negatives, so asking directly when risk is suspected is important. The reason for screening could be framed as caring for the caregiver who is the most important person for the child. It could be accompanied by acknowledging that pregnancy and the first year of life can be difficult for mothers and their partners and that we want to support them and connect them to resources, if needed. When substance use disorder is acknowledged, we should prescribe and teach about Narcan for overdose. When there is IPV, we should discuss firearm removal/locking as well as counseling on a personal safety plan.

Working as part of an on-site or virtual team that includes professionals who know about community resources and can coordinate care is essential, in addition to educating about 211 for services and 988 for suicide risk.

Finally, we can advocate and vote for programs, people, and laws that support and safeguard women and families, address substance use, and reduce access to firearms.
 

Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS (www.CHADIS.com). She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.

The best plan for oppositional behavior in a school-aged child is prevention at younger ages! But here is the family coming to see us, struggling to get cooperation, and often increasingly embarrassed and angry.

Sometimes the dynamics leading to this behavior seem obvious: the parent tells their child to put away the toys they have pulled out in your waiting room, is ignored, and cleans them up themselves without a word. The child smugly fiddles with their cell phone, reinforced by removal of the task. Even without a defined reward, this still constitutes positive reinforcement as it increases the likelihood of the same future behavior of ignoring a parental directive.

Howard_Barbara_J_BALT_2022_web.jpg

Preventing this “mild” oppositionality at a younger age may come from the parent jollying the child through the clean up, participating with them in a game-like way counting the toys or making it a race, or even using only one request before grasping the child’s hand and “assisting” them in picking up a toy while praising cooperation but these tactics become less appropriate with age.

Other factors that may have led to school-aged child refusal include yelling at them, shaming, comparing them with a more compliant sibling, threatening a punishment that is never carried out, or deferring a consequence to the other caregiver. Of course, no child would want to please a caregiver with this kind of interaction by obeying them. By school age, children have a greater need to exert autonomy and avoid humiliation and may do this by getting angry, talking back, insulting the parent, or leaving the scene. This is especially likely if peers or siblings are present and the child wants to show that they can’t be bossed around.
 

Practical advice

So what can we advise when habits of refusal have already been established? Keeping in mind the major school-age psychosocial tasks of developing autonomy and self-esteem, the parent may need to overdo opportunities for this child to have choices and experience respect. When the child has a generalized oppositional stance, the parent may feel that it is difficult to identify opportunities to do this. The key in that case is to set up for cooperation and focus on small positive or neutral bits of behavior to reinforce. For example, requesting that the child do something they want to do anyways, such as come for a snack or turn on the TV, can be met with a brief but sincere “thanks” or “thanks for hopping on that.”

Sarcasm is counterproductive at all times, as it is insulting. Asking the child’s opinion regularly then listening and reflecting, rephrasing what they said, and even checking to see if the parent “got it right” do not require that the parent agrees. Any disagreement that the parent feels is needed can be withheld for a few minutes to indicate respect for the child’s opinion. For a child to learn to make “good choices” of behavior comes also from noticing how “not so good choices” worked out, a reflection the parent can try to elicit nonjudgmentally. Rebuilding the relationship can be done over time with respectful communication and assuring daily times of showing interest in the child, fooling around together, or playing a game.

While giving more choices respects autonomy, the options must really be acceptable to the parent. They may allow the child to choose some aspects of family activities – a skate park, or a certain eatery, or parts of the outing could be optional. Sometimes the order of upcoming events can provide a choice even if attendance is required. Sometimes the dress code can be flexible (flip flops, okay sure!), or a friend (preferably a well-behaved one!) could be invited along.
 

Pitfalls to avoid

Avoiding humiliation may be obvious, such as not complementing a singing performance or insistence on the child self-reporting bad behavior. For some families the parents may need to avoid their own embarrassing habits of “bad jokes” or outlandish clothes as a reasonable accommodation. Other kinds of humiliation to avoid may be specific to the child’s weaknesses, such as insisting that a clumsy child play on a team or a shy child speak to strangers. While it may be valuable for the child to work on those weaknesses, this should be done in private, if possible, or even with a coach who is not the parent if the relationship is strained.

Sensitive or anxious children are more prone to embarrassment and may then react with oppositional responses. They often do better with notice or coaching for upcoming events that may be in a category that has upset them in the past; for example, a visit from an overly affectionate aunt. Children may gain respect for their parents by being given a task that serves as an early escape route for these situations (Oh, would you please run out to the car and get my sweater?) although progressively tolerating undesirable situations is also important practice. A kindly debrief later with praise for progress also builds skills.
 

Reinforcing behaviors and revisiting consequences

Gaining more privileges as the reward for cooperation and responsibility is the natural sequence with development but oppositional children may need a chart, ideally negotiated as a family, to be clear about this cause-effect plan and what is expected for them to earn more freedom. Another benefit of a chart is that it is an objective translator of rules that can literally be pointed to rather than a parent-child conversation that could become an argument. Parents need to make expectations clear and follow through on promised increased privileges or consequences to be seen as fair. Having regular routines for chores, not just for activities, reduces refusal as well. Such concrete steps are especially important for children with ADHD who are often easily distracted from parental requests even if they meant to follow them and have a weak sense of timing. I have seen some wise parents give their distracted or impulsive child “a minute to decide if that is their final choice” before levying a consequence.

“When-then” statements can be useful both for coaching appropriate behavior in advance, debriefs, and alerting to consequences when needed. For example: “When you ask your aunt a question right away when you meet her then her hugs will be shorter” is coaching. “When you come home an hour late then you will have an hour earlier curfew the next week” is a graded consequence.
 

The cell phone issue

I can’t omit mentioning the specific situation of a child on a cell phone or tablet ignoring or refusing requests. While having possession of such a device may be seen as a safety measure (How can he reach me?) and social coinage (All my friends have one!), they are distracting and addicting and now the most common reason I see for oppositional interactions. This has been discussed elsewhere, so let me just say that a device is a privilege and should not “belong” to a child. Delaying the age of “lending” the device, establishing rules for use to certain situations and durations, and removing it for defined periods if it is interfering with cooperation are basic principles, even though enforcing them may result in upsets. Parents may need to change their own device use to be able to address oppositional behavior in their child.

Strategies for building better behavior

How important is it for the parent to verbalize what they are doing to instruct or accommodate their school-aged child? In the presence of others, the fewer words highlighting that an intervention is underway the better. Sometimes having a secret signal to prompt or praise, even a wink, can be helpful without being humiliating. These should be decided on together in private and practiced at first in nonstressful situations. Comments of appreciation or praise are appropriate then and are often reinforcing but should be very specific; for example, “I’m glad you got ready right away when it was time to leave” rather than general or backwards praise “Ready on time today, huh?” For some, especially younger or special-needs children, marks, points, tickets, tokens, or little prizes may be beneficial reinforcers, especially when trying to establish new patterns of interaction. Praise should fairly quickly replace more concrete rewards, though, by weaning, first by intermittent delivery or spacing further apart.

When counseling about oppositional behavior in school-aged children eliciting specific examples is key to determining whether parents are overly rigid or lax, have realistic expectations for their individual child’s temperament, skills, and past experiences (for example, traumas). As Ross Greene, PhD, points out,¹ assisting families in understanding the gaps in skills that bring out opposition and categorizing behaviors into the rare “must-do’s,” and the many “just drop it’s,” in order to focus on understanding and building strategies and cooperation for situations that are important but not critical (Plan B) may require regular counseling by a mental health professional to help a child develop adaptive behavior and facilitate family harmony.

Reference

1. Greene RW. The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children, Sixth Edition, (New York: Harper Paperbacks, 2021).

Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS (www.CHADIS.com). She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. Email her at pdnews@mdedge.com.

The best plan for oppositional behavior in a school-aged child is prevention at younger ages! But here is the family coming to see us, struggling to get cooperation, and often increasingly embarrassed and angry.

Sometimes the dynamics leading to this behavior seem obvious: the parent tells their child to put away the toys they have pulled out in your waiting room, is ignored, and cleans them up themselves without a word. The child smugly fiddles with their cell phone, reinforced by removal of the task. Even without a defined reward, this still constitutes positive reinforcement as it increases the likelihood of the same future behavior of ignoring a parental directive.

Howard_Barbara_J_BALT_2022_web.jpg

Preventing this “mild” oppositionality at a younger age may come from the parent jollying the child through the clean up, participating with them in a game-like way counting the toys or making it a race, or even using only one request before grasping the child’s hand and “assisting” them in picking up a toy while praising cooperation but these tactics become less appropriate with age.

Other factors that may have led to school-aged child refusal include yelling at them, shaming, comparing them with a more compliant sibling, threatening a punishment that is never carried out, or deferring a consequence to the other caregiver. Of course, no child would want to please a caregiver with this kind of interaction by obeying them. By school age, children have a greater need to exert autonomy and avoid humiliation and may do this by getting angry, talking back, insulting the parent, or leaving the scene. This is especially likely if peers or siblings are present and the child wants to show that they can’t be bossed around.
 

Practical advice

So what can we advise when habits of refusal have already been established? Keeping in mind the major school-age psychosocial tasks of developing autonomy and self-esteem, the parent may need to overdo opportunities for this child to have choices and experience respect. When the child has a generalized oppositional stance, the parent may feel that it is difficult to identify opportunities to do this. The key in that case is to set up for cooperation and focus on small positive or neutral bits of behavior to reinforce. For example, requesting that the child do something they want to do anyways, such as come for a snack or turn on the TV, can be met with a brief but sincere “thanks” or “thanks for hopping on that.”

Sarcasm is counterproductive at all times, as it is insulting. Asking the child’s opinion regularly then listening and reflecting, rephrasing what they said, and even checking to see if the parent “got it right” do not require that the parent agrees. Any disagreement that the parent feels is needed can be withheld for a few minutes to indicate respect for the child’s opinion. For a child to learn to make “good choices” of behavior comes also from noticing how “not so good choices” worked out, a reflection the parent can try to elicit nonjudgmentally. Rebuilding the relationship can be done over time with respectful communication and assuring daily times of showing interest in the child, fooling around together, or playing a game.

While giving more choices respects autonomy, the options must really be acceptable to the parent. They may allow the child to choose some aspects of family activities – a skate park, or a certain eatery, or parts of the outing could be optional. Sometimes the order of upcoming events can provide a choice even if attendance is required. Sometimes the dress code can be flexible (flip flops, okay sure!), or a friend (preferably a well-behaved one!) could be invited along.
 

Pitfalls to avoid

Avoiding humiliation may be obvious, such as not complementing a singing performance or insistence on the child self-reporting bad behavior. For some families the parents may need to avoid their own embarrassing habits of “bad jokes” or outlandish clothes as a reasonable accommodation. Other kinds of humiliation to avoid may be specific to the child’s weaknesses, such as insisting that a clumsy child play on a team or a shy child speak to strangers. While it may be valuable for the child to work on those weaknesses, this should be done in private, if possible, or even with a coach who is not the parent if the relationship is strained.

Sensitive or anxious children are more prone to embarrassment and may then react with oppositional responses. They often do better with notice or coaching for upcoming events that may be in a category that has upset them in the past; for example, a visit from an overly affectionate aunt. Children may gain respect for their parents by being given a task that serves as an early escape route for these situations (Oh, would you please run out to the car and get my sweater?) although progressively tolerating undesirable situations is also important practice. A kindly debrief later with praise for progress also builds skills.
 

Reinforcing behaviors and revisiting consequences

Gaining more privileges as the reward for cooperation and responsibility is the natural sequence with development but oppositional children may need a chart, ideally negotiated as a family, to be clear about this cause-effect plan and what is expected for them to earn more freedom. Another benefit of a chart is that it is an objective translator of rules that can literally be pointed to rather than a parent-child conversation that could become an argument. Parents need to make expectations clear and follow through on promised increased privileges or consequences to be seen as fair. Having regular routines for chores, not just for activities, reduces refusal as well. Such concrete steps are especially important for children with ADHD who are often easily distracted from parental requests even if they meant to follow them and have a weak sense of timing. I have seen some wise parents give their distracted or impulsive child “a minute to decide if that is their final choice” before levying a consequence.

“When-then” statements can be useful both for coaching appropriate behavior in advance, debriefs, and alerting to consequences when needed. For example: “When you ask your aunt a question right away when you meet her then her hugs will be shorter” is coaching. “When you come home an hour late then you will have an hour earlier curfew the next week” is a graded consequence.
 

The cell phone issue

I can’t omit mentioning the specific situation of a child on a cell phone or tablet ignoring or refusing requests. While having possession of such a device may be seen as a safety measure (How can he reach me?) and social coinage (All my friends have one!), they are distracting and addicting and now the most common reason I see for oppositional interactions. This has been discussed elsewhere, so let me just say that a device is a privilege and should not “belong” to a child. Delaying the age of “lending” the device, establishing rules for use to certain situations and durations, and removing it for defined periods if it is interfering with cooperation are basic principles, even though enforcing them may result in upsets. Parents may need to change their own device use to be able to address oppositional behavior in their child.

Strategies for building better behavior

How important is it for the parent to verbalize what they are doing to instruct or accommodate their school-aged child? In the presence of others, the fewer words highlighting that an intervention is underway the better. Sometimes having a secret signal to prompt or praise, even a wink, can be helpful without being humiliating. These should be decided on together in private and practiced at first in nonstressful situations. Comments of appreciation or praise are appropriate then and are often reinforcing but should be very specific; for example, “I’m glad you got ready right away when it was time to leave” rather than general or backwards praise “Ready on time today, huh?” For some, especially younger or special-needs children, marks, points, tickets, tokens, or little prizes may be beneficial reinforcers, especially when trying to establish new patterns of interaction. Praise should fairly quickly replace more concrete rewards, though, by weaning, first by intermittent delivery or spacing further apart.

When counseling about oppositional behavior in school-aged children eliciting specific examples is key to determining whether parents are overly rigid or lax, have realistic expectations for their individual child’s temperament, skills, and past experiences (for example, traumas). As Ross Greene, PhD, points out,¹ assisting families in understanding the gaps in skills that bring out opposition and categorizing behaviors into the rare “must-do’s,” and the many “just drop it’s,” in order to focus on understanding and building strategies and cooperation for situations that are important but not critical (Plan B) may require regular counseling by a mental health professional to help a child develop adaptive behavior and facilitate family harmony.

Reference

1. Greene RW. The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children, Sixth Edition, (New York: Harper Paperbacks, 2021).

Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS (www.CHADIS.com). She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. Email her at pdnews@mdedge.com.

The best plan for oppositional behavior in a school-aged child is prevention at younger ages! But here is the family coming to see us, struggling to get cooperation, and often increasingly embarrassed and angry.

Sometimes the dynamics leading to this behavior seem obvious: the parent tells their child to put away the toys they have pulled out in your waiting room, is ignored, and cleans them up themselves without a word. The child smugly fiddles with their cell phone, reinforced by removal of the task. Even without a defined reward, this still constitutes positive reinforcement as it increases the likelihood of the same future behavior of ignoring a parental directive.

Howard_Barbara_J_BALT_2022_web.jpg

Preventing this “mild” oppositionality at a younger age may come from the parent jollying the child through the clean up, participating with them in a game-like way counting the toys or making it a race, or even using only one request before grasping the child’s hand and “assisting” them in picking up a toy while praising cooperation but these tactics become less appropriate with age.

Other factors that may have led to school-aged child refusal include yelling at them, shaming, comparing them with a more compliant sibling, threatening a punishment that is never carried out, or deferring a consequence to the other caregiver. Of course, no child would want to please a caregiver with this kind of interaction by obeying them. By school age, children have a greater need to exert autonomy and avoid humiliation and may do this by getting angry, talking back, insulting the parent, or leaving the scene. This is especially likely if peers or siblings are present and the child wants to show that they can’t be bossed around.
 

Practical advice

So what can we advise when habits of refusal have already been established? Keeping in mind the major school-age psychosocial tasks of developing autonomy and self-esteem, the parent may need to overdo opportunities for this child to have choices and experience respect. When the child has a generalized oppositional stance, the parent may feel that it is difficult to identify opportunities to do this. The key in that case is to set up for cooperation and focus on small positive or neutral bits of behavior to reinforce. For example, requesting that the child do something they want to do anyways, such as come for a snack or turn on the TV, can be met with a brief but sincere “thanks” or “thanks for hopping on that.”

Sarcasm is counterproductive at all times, as it is insulting. Asking the child’s opinion regularly then listening and reflecting, rephrasing what they said, and even checking to see if the parent “got it right” do not require that the parent agrees. Any disagreement that the parent feels is needed can be withheld for a few minutes to indicate respect for the child’s opinion. For a child to learn to make “good choices” of behavior comes also from noticing how “not so good choices” worked out, a reflection the parent can try to elicit nonjudgmentally. Rebuilding the relationship can be done over time with respectful communication and assuring daily times of showing interest in the child, fooling around together, or playing a game.

While giving more choices respects autonomy, the options must really be acceptable to the parent. They may allow the child to choose some aspects of family activities – a skate park, or a certain eatery, or parts of the outing could be optional. Sometimes the order of upcoming events can provide a choice even if attendance is required. Sometimes the dress code can be flexible (flip flops, okay sure!), or a friend (preferably a well-behaved one!) could be invited along.
 

Pitfalls to avoid

Avoiding humiliation may be obvious, such as not complementing a singing performance or insistence on the child self-reporting bad behavior. For some families the parents may need to avoid their own embarrassing habits of “bad jokes” or outlandish clothes as a reasonable accommodation. Other kinds of humiliation to avoid may be specific to the child’s weaknesses, such as insisting that a clumsy child play on a team or a shy child speak to strangers. While it may be valuable for the child to work on those weaknesses, this should be done in private, if possible, or even with a coach who is not the parent if the relationship is strained.

Sensitive or anxious children are more prone to embarrassment and may then react with oppositional responses. They often do better with notice or coaching for upcoming events that may be in a category that has upset them in the past; for example, a visit from an overly affectionate aunt. Children may gain respect for their parents by being given a task that serves as an early escape route for these situations (Oh, would you please run out to the car and get my sweater?) although progressively tolerating undesirable situations is also important practice. A kindly debrief later with praise for progress also builds skills.
 

Reinforcing behaviors and revisiting consequences

Gaining more privileges as the reward for cooperation and responsibility is the natural sequence with development but oppositional children may need a chart, ideally negotiated as a family, to be clear about this cause-effect plan and what is expected for them to earn more freedom. Another benefit of a chart is that it is an objective translator of rules that can literally be pointed to rather than a parent-child conversation that could become an argument. Parents need to make expectations clear and follow through on promised increased privileges or consequences to be seen as fair. Having regular routines for chores, not just for activities, reduces refusal as well. Such concrete steps are especially important for children with ADHD who are often easily distracted from parental requests even if they meant to follow them and have a weak sense of timing. I have seen some wise parents give their distracted or impulsive child “a minute to decide if that is their final choice” before levying a consequence.

“When-then” statements can be useful both for coaching appropriate behavior in advance, debriefs, and alerting to consequences when needed. For example: “When you ask your aunt a question right away when you meet her then her hugs will be shorter” is coaching. “When you come home an hour late then you will have an hour earlier curfew the next week” is a graded consequence.
 

The cell phone issue

I can’t omit mentioning the specific situation of a child on a cell phone or tablet ignoring or refusing requests. While having possession of such a device may be seen as a safety measure (How can he reach me?) and social coinage (All my friends have one!), they are distracting and addicting and now the most common reason I see for oppositional interactions. This has been discussed elsewhere, so let me just say that a device is a privilege and should not “belong” to a child. Delaying the age of “lending” the device, establishing rules for use to certain situations and durations, and removing it for defined periods if it is interfering with cooperation are basic principles, even though enforcing them may result in upsets. Parents may need to change their own device use to be able to address oppositional behavior in their child.

Strategies for building better behavior

How important is it for the parent to verbalize what they are doing to instruct or accommodate their school-aged child? In the presence of others, the fewer words highlighting that an intervention is underway the better. Sometimes having a secret signal to prompt or praise, even a wink, can be helpful without being humiliating. These should be decided on together in private and practiced at first in nonstressful situations. Comments of appreciation or praise are appropriate then and are often reinforcing but should be very specific; for example, “I’m glad you got ready right away when it was time to leave” rather than general or backwards praise “Ready on time today, huh?” For some, especially younger or special-needs children, marks, points, tickets, tokens, or little prizes may be beneficial reinforcers, especially when trying to establish new patterns of interaction. Praise should fairly quickly replace more concrete rewards, though, by weaning, first by intermittent delivery or spacing further apart.

When counseling about oppositional behavior in school-aged children eliciting specific examples is key to determining whether parents are overly rigid or lax, have realistic expectations for their individual child’s temperament, skills, and past experiences (for example, traumas). As Ross Greene, PhD, points out,¹ assisting families in understanding the gaps in skills that bring out opposition and categorizing behaviors into the rare “must-do’s,” and the many “just drop it’s,” in order to focus on understanding and building strategies and cooperation for situations that are important but not critical (Plan B) may require regular counseling by a mental health professional to help a child develop adaptive behavior and facilitate family harmony.

Reference

1. Greene RW. The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children, Sixth Edition, (New York: Harper Paperbacks, 2021).

Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS (www.CHADIS.com). She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. Email her at pdnews@mdedge.com.

When I speak with parents and colleagues about the well-being of today’s youth, the nearly unanimous cry is the negative effects of social media. But then, after a few moments of silence they say, “I don’t know how we can stop it. The genie is out of the bottle.”

The helplessness we as responsible adults and professionals feel about our inability to change this cultural shift to youth fixation on social media and its increasingly clear impact on depression, anxiety, self-esteem, and even suicide is profound. In China the country has “simply” regulated access to the Internet for children to 2 hours per day and blocked many websites. But such universal restriction is not likely in the United States. We need some other solutions.
 

A solution for all ages

Reach Out and Read, an international program promoting early relational health and literacy by encouraging and modeling reading and handing out books to families with children aged 0-5 years, has significant evidence for improving child development and parent-child interaction.

But why stop promoting reading and the associated parent-child bonding at 5 years old? Academic progress, child mental health and well-being, and family relationships are all currently in trouble and could all benefit from more reading. As pediatric providers for all ages of children and youth we can effectively promote reading as part of preventive care, not just for the youngest.

Reading fluency is a key factor in academic success. A study from 2019, before the pandemic, found that by the end of high school, students were reading 19% slower than were students of a similar age 50 years ago. The possible reasons, among many, include poverty with its effect on vocabulary, modeling and access to books, hours on social media, and less unstructured time to read for pleasure. With less reading comes less practice. Reading then doesn’t feel as comfortable and is avoided.

Howard_Barbara_J_BALT_2022_web.jpg

The pandemic made measures of academic level even worse, with reading fluency in second and third grade now about 30% behind what would be expected. Reading fluency and comprehension become more critical for future academic progress beginning in third grade when “learning to read” shifts to “reading to learn.” Educators are doing their best to catch children up but with limited support resources, and families need strategies to help their children.

Early strategies to promote reading by discussing the benefits with parents of bedtime stories and sharing books seems easy in comparison to encouraging school-aged children and older youth to read. But there are good reasons and strategies to persist.

Reading can help a child’s mental health as well as development. After a day at school, picking up another book may seem to the parent like more homework. But “reading for pleasure” is different. Reading has been shown to lower heart rate and muscle tension and reduce stress by as much as 68% in minutes, even lowering cortisol and activating pleasure centers of the brain. An immersive story can distract one from worries and be a real escape; the opposite of looking at social media online where peer comparisons and a constant stream of nasty comments 24/7 are culprits producing anxiety, depression, eating disorders, and suicide. Books that have characters going through similar struggles as those of the youth provide a sense of not being alone with these stresses and generally include models of problem solving and resolution that can inspire hopefulness. Joining (or starting) a kids’ or parent-child book club offers a chance to socialize with a nonjudgmental shared focus. There are books with content about all sorts of topics that may be areas the child or youth have as life and career goals that may help them gain new ideas and confidence as well as knowledge and skills. Having clear ideas about future roles is a one way to reduce the chance of developing depression and even suicide.

Reading a book, ideally illuminated by a warm colored light, assists in falling asleep, a huge issue for many youth. This is valuable in itself as inadequate sleep is a large contributor to worsening of many mental conditions. In contrast, the blue light from computer screens makes it harder to fall asleep. When reading a book is a bedtime habit, just as for babies and toddlers and whether read to by a parent (no age is too old!) or reading alone, the routine itself helps prepare the brain to transition into sleep.
 

Encouraging good habits

But how can parents get their children away from scanning the Internet to reading books? The American Academy of Pediatrics suggests setting time blocks for the day designated for school, exercise, homework, media, and sleep with a goal of a healthy balance. Reading could be added to the family’s plan. Making reading in the same room with parents as a regular habit both models reading (as parents have to get offline, too!) and sets up an opportunity to ask questions and converse about the reading materials, thereby building family relationships. Children are notorious for being recalcitrant about talking “about their day” when coming home from school. Having a less personal and intrusive subject to talk about creates a favorable setting for precious parent-child discussions. Some families read aloud to each other. This comes up naturally when reading a clip from a newspaper or magazine. It is especially valuable and inclusive for younger children who may not yet be able to read that level of material.

Getting creative

Some other strategies to promote reading include bringing books, magazines, or even comics with subjects that interest the child or youth into the house and leaving them around without comment. Getting started on a book series (Nancy Drew, Harry Potter, etc.) that is captivating provides extra incentive. Parents can talk about their favorites from their childhood, some of which are timeless! Families may need to be creative and find literature about the online characters from video games or movies that already interest their child, even if those are not seen as ideal learning material. Not commenting on the presence of the reading material takes the pressure off and makes it clear that it is their choice whether to read them or not.

Books need to be seen as a gift rather than a “penalty” for being online. Visiting a bookstore together or giving a gift certificate for books are other ways a parent can support reading while indicating that the youth has choice. There are now more than 150,000 Little Free Library locations worldwide (visible on the app) where books can be obtained 24/7 at no cost. Bringing books to donate or even joining the cause and becoming a steward of one of these pop-up libraries models high valuation of reading but is also a volunteer activity of which the child can be proud. We brought our children’s old books to our pediatric practice and encouraged patients to “bring one and take one.” Of course, the public library is often an option and is free. Another advantage of the library is that librarians and other children there may make suggestions of books that are popular with children their age. There are lots of specific suggestions online as well.

We need to be aware that children who resist reading books may have reading weaknesses. We can assess reading fluency with standard Gray Oral Reading paragraphs or the Wide Range Achievement test in the office or recommend a reading assessment by the school. Parents who already know that their child has a reading problem may be getting advice from teachers or tutors on how to help. But to promote reading that is not onerous for a child with a reading disability, parents can do more reading aloud at home, offer audiobooks or podcasts at home or play them while driving, and aim for books with a lower reading level. Teachers or librarians can make suggestions. It is important for family members to not be judgmental about a child’s choice of reading materials.

We do not need to feel helpless in the face of the Internet – we can recommend more reading!
 

Dr. Howard is assistant professor of pediatrics at The Johns Hopkins University, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.

When I speak with parents and colleagues about the well-being of today’s youth, the nearly unanimous cry is the negative effects of social media. But then, after a few moments of silence they say, “I don’t know how we can stop it. The genie is out of the bottle.”

The helplessness we as responsible adults and professionals feel about our inability to change this cultural shift to youth fixation on social media and its increasingly clear impact on depression, anxiety, self-esteem, and even suicide is profound. In China the country has “simply” regulated access to the Internet for children to 2 hours per day and blocked many websites. But such universal restriction is not likely in the United States. We need some other solutions.
 

A solution for all ages

Reach Out and Read, an international program promoting early relational health and literacy by encouraging and modeling reading and handing out books to families with children aged 0-5 years, has significant evidence for improving child development and parent-child interaction.

But why stop promoting reading and the associated parent-child bonding at 5 years old? Academic progress, child mental health and well-being, and family relationships are all currently in trouble and could all benefit from more reading. As pediatric providers for all ages of children and youth we can effectively promote reading as part of preventive care, not just for the youngest.

Reading fluency is a key factor in academic success. A study from 2019, before the pandemic, found that by the end of high school, students were reading 19% slower than were students of a similar age 50 years ago. The possible reasons, among many, include poverty with its effect on vocabulary, modeling and access to books, hours on social media, and less unstructured time to read for pleasure. With less reading comes less practice. Reading then doesn’t feel as comfortable and is avoided.

Howard_Barbara_J_BALT_2022_web.jpg

The pandemic made measures of academic level even worse, with reading fluency in second and third grade now about 30% behind what would be expected. Reading fluency and comprehension become more critical for future academic progress beginning in third grade when “learning to read” shifts to “reading to learn.” Educators are doing their best to catch children up but with limited support resources, and families need strategies to help their children.

Early strategies to promote reading by discussing the benefits with parents of bedtime stories and sharing books seems easy in comparison to encouraging school-aged children and older youth to read. But there are good reasons and strategies to persist.

Reading can help a child’s mental health as well as development. After a day at school, picking up another book may seem to the parent like more homework. But “reading for pleasure” is different. Reading has been shown to lower heart rate and muscle tension and reduce stress by as much as 68% in minutes, even lowering cortisol and activating pleasure centers of the brain. An immersive story can distract one from worries and be a real escape; the opposite of looking at social media online where peer comparisons and a constant stream of nasty comments 24/7 are culprits producing anxiety, depression, eating disorders, and suicide. Books that have characters going through similar struggles as those of the youth provide a sense of not being alone with these stresses and generally include models of problem solving and resolution that can inspire hopefulness. Joining (or starting) a kids’ or parent-child book club offers a chance to socialize with a nonjudgmental shared focus. There are books with content about all sorts of topics that may be areas the child or youth have as life and career goals that may help them gain new ideas and confidence as well as knowledge and skills. Having clear ideas about future roles is a one way to reduce the chance of developing depression and even suicide.

Reading a book, ideally illuminated by a warm colored light, assists in falling asleep, a huge issue for many youth. This is valuable in itself as inadequate sleep is a large contributor to worsening of many mental conditions. In contrast, the blue light from computer screens makes it harder to fall asleep. When reading a book is a bedtime habit, just as for babies and toddlers and whether read to by a parent (no age is too old!) or reading alone, the routine itself helps prepare the brain to transition into sleep.
 

Encouraging good habits

But how can parents get their children away from scanning the Internet to reading books? The American Academy of Pediatrics suggests setting time blocks for the day designated for school, exercise, homework, media, and sleep with a goal of a healthy balance. Reading could be added to the family’s plan. Making reading in the same room with parents as a regular habit both models reading (as parents have to get offline, too!) and sets up an opportunity to ask questions and converse about the reading materials, thereby building family relationships. Children are notorious for being recalcitrant about talking “about their day” when coming home from school. Having a less personal and intrusive subject to talk about creates a favorable setting for precious parent-child discussions. Some families read aloud to each other. This comes up naturally when reading a clip from a newspaper or magazine. It is especially valuable and inclusive for younger children who may not yet be able to read that level of material.

Getting creative

Some other strategies to promote reading include bringing books, magazines, or even comics with subjects that interest the child or youth into the house and leaving them around without comment. Getting started on a book series (Nancy Drew, Harry Potter, etc.) that is captivating provides extra incentive. Parents can talk about their favorites from their childhood, some of which are timeless! Families may need to be creative and find literature about the online characters from video games or movies that already interest their child, even if those are not seen as ideal learning material. Not commenting on the presence of the reading material takes the pressure off and makes it clear that it is their choice whether to read them or not.

Books need to be seen as a gift rather than a “penalty” for being online. Visiting a bookstore together or giving a gift certificate for books are other ways a parent can support reading while indicating that the youth has choice. There are now more than 150,000 Little Free Library locations worldwide (visible on the app) where books can be obtained 24/7 at no cost. Bringing books to donate or even joining the cause and becoming a steward of one of these pop-up libraries models high valuation of reading but is also a volunteer activity of which the child can be proud. We brought our children’s old books to our pediatric practice and encouraged patients to “bring one and take one.” Of course, the public library is often an option and is free. Another advantage of the library is that librarians and other children there may make suggestions of books that are popular with children their age. There are lots of specific suggestions online as well.

We need to be aware that children who resist reading books may have reading weaknesses. We can assess reading fluency with standard Gray Oral Reading paragraphs or the Wide Range Achievement test in the office or recommend a reading assessment by the school. Parents who already know that their child has a reading problem may be getting advice from teachers or tutors on how to help. But to promote reading that is not onerous for a child with a reading disability, parents can do more reading aloud at home, offer audiobooks or podcasts at home or play them while driving, and aim for books with a lower reading level. Teachers or librarians can make suggestions. It is important for family members to not be judgmental about a child’s choice of reading materials.

We do not need to feel helpless in the face of the Internet – we can recommend more reading!
 

Dr. Howard is assistant professor of pediatrics at The Johns Hopkins University, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.

When I speak with parents and colleagues about the well-being of today’s youth, the nearly unanimous cry is the negative effects of social media. But then, after a few moments of silence they say, “I don’t know how we can stop it. The genie is out of the bottle.”

The helplessness we as responsible adults and professionals feel about our inability to change this cultural shift to youth fixation on social media and its increasingly clear impact on depression, anxiety, self-esteem, and even suicide is profound. In China the country has “simply” regulated access to the Internet for children to 2 hours per day and blocked many websites. But such universal restriction is not likely in the United States. We need some other solutions.
 

A solution for all ages

Reach Out and Read, an international program promoting early relational health and literacy by encouraging and modeling reading and handing out books to families with children aged 0-5 years, has significant evidence for improving child development and parent-child interaction.

But why stop promoting reading and the associated parent-child bonding at 5 years old? Academic progress, child mental health and well-being, and family relationships are all currently in trouble and could all benefit from more reading. As pediatric providers for all ages of children and youth we can effectively promote reading as part of preventive care, not just for the youngest.

Reading fluency is a key factor in academic success. A study from 2019, before the pandemic, found that by the end of high school, students were reading 19% slower than were students of a similar age 50 years ago. The possible reasons, among many, include poverty with its effect on vocabulary, modeling and access to books, hours on social media, and less unstructured time to read for pleasure. With less reading comes less practice. Reading then doesn’t feel as comfortable and is avoided.

Howard_Barbara_J_BALT_2022_web.jpg

The pandemic made measures of academic level even worse, with reading fluency in second and third grade now about 30% behind what would be expected. Reading fluency and comprehension become more critical for future academic progress beginning in third grade when “learning to read” shifts to “reading to learn.” Educators are doing their best to catch children up but with limited support resources, and families need strategies to help their children.

Early strategies to promote reading by discussing the benefits with parents of bedtime stories and sharing books seems easy in comparison to encouraging school-aged children and older youth to read. But there are good reasons and strategies to persist.

Reading can help a child’s mental health as well as development. After a day at school, picking up another book may seem to the parent like more homework. But “reading for pleasure” is different. Reading has been shown to lower heart rate and muscle tension and reduce stress by as much as 68% in minutes, even lowering cortisol and activating pleasure centers of the brain. An immersive story can distract one from worries and be a real escape; the opposite of looking at social media online where peer comparisons and a constant stream of nasty comments 24/7 are culprits producing anxiety, depression, eating disorders, and suicide. Books that have characters going through similar struggles as those of the youth provide a sense of not being alone with these stresses and generally include models of problem solving and resolution that can inspire hopefulness. Joining (or starting) a kids’ or parent-child book club offers a chance to socialize with a nonjudgmental shared focus. There are books with content about all sorts of topics that may be areas the child or youth have as life and career goals that may help them gain new ideas and confidence as well as knowledge and skills. Having clear ideas about future roles is a one way to reduce the chance of developing depression and even suicide.

Reading a book, ideally illuminated by a warm colored light, assists in falling asleep, a huge issue for many youth. This is valuable in itself as inadequate sleep is a large contributor to worsening of many mental conditions. In contrast, the blue light from computer screens makes it harder to fall asleep. When reading a book is a bedtime habit, just as for babies and toddlers and whether read to by a parent (no age is too old!) or reading alone, the routine itself helps prepare the brain to transition into sleep.
 

Encouraging good habits

But how can parents get their children away from scanning the Internet to reading books? The American Academy of Pediatrics suggests setting time blocks for the day designated for school, exercise, homework, media, and sleep with a goal of a healthy balance. Reading could be added to the family’s plan. Making reading in the same room with parents as a regular habit both models reading (as parents have to get offline, too!) and sets up an opportunity to ask questions and converse about the reading materials, thereby building family relationships. Children are notorious for being recalcitrant about talking “about their day” when coming home from school. Having a less personal and intrusive subject to talk about creates a favorable setting for precious parent-child discussions. Some families read aloud to each other. This comes up naturally when reading a clip from a newspaper or magazine. It is especially valuable and inclusive for younger children who may not yet be able to read that level of material.

Getting creative

Some other strategies to promote reading include bringing books, magazines, or even comics with subjects that interest the child or youth into the house and leaving them around without comment. Getting started on a book series (Nancy Drew, Harry Potter, etc.) that is captivating provides extra incentive. Parents can talk about their favorites from their childhood, some of which are timeless! Families may need to be creative and find literature about the online characters from video games or movies that already interest their child, even if those are not seen as ideal learning material. Not commenting on the presence of the reading material takes the pressure off and makes it clear that it is their choice whether to read them or not.

Books need to be seen as a gift rather than a “penalty” for being online. Visiting a bookstore together or giving a gift certificate for books are other ways a parent can support reading while indicating that the youth has choice. There are now more than 150,000 Little Free Library locations worldwide (visible on the app) where books can be obtained 24/7 at no cost. Bringing books to donate or even joining the cause and becoming a steward of one of these pop-up libraries models high valuation of reading but is also a volunteer activity of which the child can be proud. We brought our children’s old books to our pediatric practice and encouraged patients to “bring one and take one.” Of course, the public library is often an option and is free. Another advantage of the library is that librarians and other children there may make suggestions of books that are popular with children their age. There are lots of specific suggestions online as well.

We need to be aware that children who resist reading books may have reading weaknesses. We can assess reading fluency with standard Gray Oral Reading paragraphs or the Wide Range Achievement test in the office or recommend a reading assessment by the school. Parents who already know that their child has a reading problem may be getting advice from teachers or tutors on how to help. But to promote reading that is not onerous for a child with a reading disability, parents can do more reading aloud at home, offer audiobooks or podcasts at home or play them while driving, and aim for books with a lower reading level. Teachers or librarians can make suggestions. It is important for family members to not be judgmental about a child’s choice of reading materials.

We do not need to feel helpless in the face of the Internet – we can recommend more reading!
 

Dr. Howard is assistant professor of pediatrics at The Johns Hopkins University, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.

Although I have worked with depressed patients for many years, I have come to realize that it is now unfortunately an essential primary care skill to have nuanced conversations about reducing access to and use of deadly weapons (lethal means) for all families.

Howard_Barbara_J_BALT_2022_web.jpg

Firearms are now the leading cause of death for U.S. children and youth aged 1-24 years, an increase of 29.5% from 2019 to 2020. Among all youth firearm deaths, homicides (58%), suicides (37%), unintentional shootings (2%), and legal intervention (1%) were causes. These horrific numbers do not even include almost 400,000 child ED visits from 2010 to 2019 for nonfatal firearm injuries that were unintentional (39.4%), assault-related (37.7%), or self-harm (1.7%).

Accidental injury from firearms is greater when the weapon is a handgun or pistol as these are small enough to be fired by a 2-year-old, more likely to be stored loaded with ammunition as “self-protection,” and less likely to be in a gun storage case.

While an overall decline in gun ownership has occurred in homes with children ages 1-5, the proportion of weapons that are handguns has actually increased, posing higher danger to the family itself. We can’t assume hiding a weapon is ever enough as children often know the location of guns and their keys or lock codes.

Many Americans fear for their safety, have doubts about policing as protective, and strongly assert the need to protect themselves. While asking about guns in the home is universally recommended, these beliefs need to be taken into account in the discussion. It is also important to speak with the firearm owner, most often the father. We might ask, “Do you feel that you need a firearm in your home to feel safe?” as a way to nonjudgmentally acknowledge their beliefs. Because women are more likely to be killed by their spouses than by all other types of assailants combined, we can ask, “What dangers worry you the most?” and “Do you feel safe in your current and any past relationships?” If their answer is worrisome, the discussion must first turn to dealing with the family situation. If the perceived threat is outside the family, we can inform families that having a gun in evidence in the home greatly increases the risk of being hurt by an assailant as well as risk for child injury and death. We might ask, “Can you think of any other ways to protect your home (for example, alarm system, outdoor lighting, dog, or pepper spray)?”

If parents insist on keeping a gun, we can strongly and directly recommend that all firearms be stored locked, unloaded, and with ammunition locked and stored separately. We can provide information on such locking and storage options. Programs in which information on devices to disable the gun were provided – such as cables to pass through the chamber or trigger locks – have shown big increases in safe gun storage. It may be worth saying/posting information on the Child Access Prevention (CAP) laws, enacted by many states, making adults owning firearms that are not stored safely unloaded legally responsible for any resulting injuries or deaths. Such laws have reduced injuries of both children and adults by 30%-40%, unintentional gun deaths by 23%, and gun suicides by 11% (for 14- to 17-year-olds).

If the reason for owning a gun is for hunting, the owner is more likely to have had firearm safety training and use a long gun. Long guns are more difficult for a child. Discussing safe hunting gun storage is still worth recommending, as is removing any handguns they may own as these are most dangerous.

Removing or securing firearms is important for everyone’s safety but it is an essential and perhaps more difficult topic of discussion when a child is at risk for suicide or harming others. We need to consider some crucial facts about completed suicide, now the leading cause of death in children and adolescents and largely from guns. Most suicide attempts occur within 10 minutes of having a wave of suicidal thoughts. These waves of thoughts may be acted upon immediately when lethal means are available, with guns by far the most likely to result in death. It is therefore critical to assess access and counsel about lethal means in every family with a child reporting thoughts of killing themselves or others, or a history of violence or substance use. Even without imminent risk of self-harm, we can start a discussion about securing lethal means by saying, “It’s like wearing a seatbelt; you don’t expect a car crash, but if one happens, wearing a safety belt can greatly reduce injury. Guns are the most frequent cause of dying, so let’s make a plan to reduce access to those.”

Creating a written plan to deal with waves of suicidal thoughts is the basis of a Safety Plan. We can accurately remind families and youth that “When someone is struggling like this, sometimes suicidal feelings can show up and get worse fast. There are steps I routinely recommend to make things safer at home.”

It is important to assess the presence of guns in the primary home and other places the child spends time even if we have asked in the past, as things change. If firearms are present, even if locked up appropriately, when a child is having suicidal thoughts we can say, “What some gun owners in your situation do is store weapons elsewhere temporarily with someone they trust, at a self-storage unit, gun or pawn shop, or police department. I’d like to talk over storage options like that with you.” If the child themself owns the firearm, they need to agree with a removal or lock up plan for giving up their access.

If the gun owner is unwilling to remove firearms, even temporarily, we can ask them to lock them up separately from ammunition, a move that alone reduces danger a lot, and ensure the child has no access to the keys or combination. Better yet, we can ask, “Would you be willing to ask someone who doesn’t live in your home to hold the keys or to change the combination temporarily or at least store the ammunition?” They could also remove from the home a critical component of the gun so that it can’t fire, such as the slide or firing pin. If even those steps are not accepted, we can ask, “What other options would you be willing to consider to increase your child’s safety, at least until s/he is doing better?”

Whatever plan we negotiate with the family, as for any health behavior change strategy, it is more likely to be implemented if we summarize the specifics, write them down, and set a time-frame for carrying it out. We might say, “Let’s review who’s doing what and when: Dad will take the guns to his uncle’s house tomorrow and meanwhile, he will put them in the gun safe.” A follow-up call or contact soon, a key part of management of suicidal ideation, also signals how strongly we care about these safety measures and has been shown to increase implementation. We might call to say, “I wanted to check in and see how [you/your child] is doing and also ask how the plan is going that we talked about for gun storage.”

Discussions about firearms can spark strong emotions, especially if the family suspects political motivations. The Florida law prohibiting health care providers from discussing guns with patients was overturned but the thinking remains and may give us pause before having these important conversations. First of all, we need to stay calm and be prepared with key facts. The “sandwich” method is a useful approach to reduce resistance: start with something you can agree on (such as “What we hear on the news can make us all scared about safety”); then add the facts we want to convey (such as “You are actually less likely to get hurt in a break-in if you do not have a gun”); then conclude with a positive (such as “I can see that you are giving a lot of thought to how to keep your family safe”). Families generally trust our intentions and knowledge and appreciate rather than resent safety counseling when it is given in a nonjudgmental manner. Because we are protectors of child health, firearm safety must be an essential part of our anticipatory guidance.

Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS (www.CHADIS.com). She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.

*Wording suggestions adapted from https://www.hsph.harvard.edu/means-matter/recommendations/clinicians.

Although I have worked with depressed patients for many years, I have come to realize that it is now unfortunately an essential primary care skill to have nuanced conversations about reducing access to and use of deadly weapons (lethal means) for all families.

Howard_Barbara_J_BALT_2022_web.jpg

Firearms are now the leading cause of death for U.S. children and youth aged 1-24 years, an increase of 29.5% from 2019 to 2020. Among all youth firearm deaths, homicides (58%), suicides (37%), unintentional shootings (2%), and legal intervention (1%) were causes. These horrific numbers do not even include almost 400,000 child ED visits from 2010 to 2019 for nonfatal firearm injuries that were unintentional (39.4%), assault-related (37.7%), or self-harm (1.7%).

Accidental injury from firearms is greater when the weapon is a handgun or pistol as these are small enough to be fired by a 2-year-old, more likely to be stored loaded with ammunition as “self-protection,” and less likely to be in a gun storage case.

While an overall decline in gun ownership has occurred in homes with children ages 1-5, the proportion of weapons that are handguns has actually increased, posing higher danger to the family itself. We can’t assume hiding a weapon is ever enough as children often know the location of guns and their keys or lock codes.

Many Americans fear for their safety, have doubts about policing as protective, and strongly assert the need to protect themselves. While asking about guns in the home is universally recommended, these beliefs need to be taken into account in the discussion. It is also important to speak with the firearm owner, most often the father. We might ask, “Do you feel that you need a firearm in your home to feel safe?” as a way to nonjudgmentally acknowledge their beliefs. Because women are more likely to be killed by their spouses than by all other types of assailants combined, we can ask, “What dangers worry you the most?” and “Do you feel safe in your current and any past relationships?” If their answer is worrisome, the discussion must first turn to dealing with the family situation. If the perceived threat is outside the family, we can inform families that having a gun in evidence in the home greatly increases the risk of being hurt by an assailant as well as risk for child injury and death. We might ask, “Can you think of any other ways to protect your home (for example, alarm system, outdoor lighting, dog, or pepper spray)?”

If parents insist on keeping a gun, we can strongly and directly recommend that all firearms be stored locked, unloaded, and with ammunition locked and stored separately. We can provide information on such locking and storage options. Programs in which information on devices to disable the gun were provided – such as cables to pass through the chamber or trigger locks – have shown big increases in safe gun storage. It may be worth saying/posting information on the Child Access Prevention (CAP) laws, enacted by many states, making adults owning firearms that are not stored safely unloaded legally responsible for any resulting injuries or deaths. Such laws have reduced injuries of both children and adults by 30%-40%, unintentional gun deaths by 23%, and gun suicides by 11% (for 14- to 17-year-olds).

If the reason for owning a gun is for hunting, the owner is more likely to have had firearm safety training and use a long gun. Long guns are more difficult for a child. Discussing safe hunting gun storage is still worth recommending, as is removing any handguns they may own as these are most dangerous.

Removing or securing firearms is important for everyone’s safety but it is an essential and perhaps more difficult topic of discussion when a child is at risk for suicide or harming others. We need to consider some crucial facts about completed suicide, now the leading cause of death in children and adolescents and largely from guns. Most suicide attempts occur within 10 minutes of having a wave of suicidal thoughts. These waves of thoughts may be acted upon immediately when lethal means are available, with guns by far the most likely to result in death. It is therefore critical to assess access and counsel about lethal means in every family with a child reporting thoughts of killing themselves or others, or a history of violence or substance use. Even without imminent risk of self-harm, we can start a discussion about securing lethal means by saying, “It’s like wearing a seatbelt; you don’t expect a car crash, but if one happens, wearing a safety belt can greatly reduce injury. Guns are the most frequent cause of dying, so let’s make a plan to reduce access to those.”

Creating a written plan to deal with waves of suicidal thoughts is the basis of a Safety Plan. We can accurately remind families and youth that “When someone is struggling like this, sometimes suicidal feelings can show up and get worse fast. There are steps I routinely recommend to make things safer at home.”

It is important to assess the presence of guns in the primary home and other places the child spends time even if we have asked in the past, as things change. If firearms are present, even if locked up appropriately, when a child is having suicidal thoughts we can say, “What some gun owners in your situation do is store weapons elsewhere temporarily with someone they trust, at a self-storage unit, gun or pawn shop, or police department. I’d like to talk over storage options like that with you.” If the child themself owns the firearm, they need to agree with a removal or lock up plan for giving up their access.

If the gun owner is unwilling to remove firearms, even temporarily, we can ask them to lock them up separately from ammunition, a move that alone reduces danger a lot, and ensure the child has no access to the keys or combination. Better yet, we can ask, “Would you be willing to ask someone who doesn’t live in your home to hold the keys or to change the combination temporarily or at least store the ammunition?” They could also remove from the home a critical component of the gun so that it can’t fire, such as the slide or firing pin. If even those steps are not accepted, we can ask, “What other options would you be willing to consider to increase your child’s safety, at least until s/he is doing better?”

Whatever plan we negotiate with the family, as for any health behavior change strategy, it is more likely to be implemented if we summarize the specifics, write them down, and set a time-frame for carrying it out. We might say, “Let’s review who’s doing what and when: Dad will take the guns to his uncle’s house tomorrow and meanwhile, he will put them in the gun safe.” A follow-up call or contact soon, a key part of management of suicidal ideation, also signals how strongly we care about these safety measures and has been shown to increase implementation. We might call to say, “I wanted to check in and see how [you/your child] is doing and also ask how the plan is going that we talked about for gun storage.”

Discussions about firearms can spark strong emotions, especially if the family suspects political motivations. The Florida law prohibiting health care providers from discussing guns with patients was overturned but the thinking remains and may give us pause before having these important conversations. First of all, we need to stay calm and be prepared with key facts. The “sandwich” method is a useful approach to reduce resistance: start with something you can agree on (such as “What we hear on the news can make us all scared about safety”); then add the facts we want to convey (such as “You are actually less likely to get hurt in a break-in if you do not have a gun”); then conclude with a positive (such as “I can see that you are giving a lot of thought to how to keep your family safe”). Families generally trust our intentions and knowledge and appreciate rather than resent safety counseling when it is given in a nonjudgmental manner. Because we are protectors of child health, firearm safety must be an essential part of our anticipatory guidance.

Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS (www.CHADIS.com). She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.

*Wording suggestions adapted from https://www.hsph.harvard.edu/means-matter/recommendations/clinicians.

Although I have worked with depressed patients for many years, I have come to realize that it is now unfortunately an essential primary care skill to have nuanced conversations about reducing access to and use of deadly weapons (lethal means) for all families.

Howard_Barbara_J_BALT_2022_web.jpg

Firearms are now the leading cause of death for U.S. children and youth aged 1-24 years, an increase of 29.5% from 2019 to 2020. Among all youth firearm deaths, homicides (58%), suicides (37%), unintentional shootings (2%), and legal intervention (1%) were causes. These horrific numbers do not even include almost 400,000 child ED visits from 2010 to 2019 for nonfatal firearm injuries that were unintentional (39.4%), assault-related (37.7%), or self-harm (1.7%).

Accidental injury from firearms is greater when the weapon is a handgun or pistol as these are small enough to be fired by a 2-year-old, more likely to be stored loaded with ammunition as “self-protection,” and less likely to be in a gun storage case.

While an overall decline in gun ownership has occurred in homes with children ages 1-5, the proportion of weapons that are handguns has actually increased, posing higher danger to the family itself. We can’t assume hiding a weapon is ever enough as children often know the location of guns and their keys or lock codes.

Many Americans fear for their safety, have doubts about policing as protective, and strongly assert the need to protect themselves. While asking about guns in the home is universally recommended, these beliefs need to be taken into account in the discussion. It is also important to speak with the firearm owner, most often the father. We might ask, “Do you feel that you need a firearm in your home to feel safe?” as a way to nonjudgmentally acknowledge their beliefs. Because women are more likely to be killed by their spouses than by all other types of assailants combined, we can ask, “What dangers worry you the most?” and “Do you feel safe in your current and any past relationships?” If their answer is worrisome, the discussion must first turn to dealing with the family situation. If the perceived threat is outside the family, we can inform families that having a gun in evidence in the home greatly increases the risk of being hurt by an assailant as well as risk for child injury and death. We might ask, “Can you think of any other ways to protect your home (for example, alarm system, outdoor lighting, dog, or pepper spray)?”

If parents insist on keeping a gun, we can strongly and directly recommend that all firearms be stored locked, unloaded, and with ammunition locked and stored separately. We can provide information on such locking and storage options. Programs in which information on devices to disable the gun were provided – such as cables to pass through the chamber or trigger locks – have shown big increases in safe gun storage. It may be worth saying/posting information on the Child Access Prevention (CAP) laws, enacted by many states, making adults owning firearms that are not stored safely unloaded legally responsible for any resulting injuries or deaths. Such laws have reduced injuries of both children and adults by 30%-40%, unintentional gun deaths by 23%, and gun suicides by 11% (for 14- to 17-year-olds).

If the reason for owning a gun is for hunting, the owner is more likely to have had firearm safety training and use a long gun. Long guns are more difficult for a child. Discussing safe hunting gun storage is still worth recommending, as is removing any handguns they may own as these are most dangerous.

Removing or securing firearms is important for everyone’s safety but it is an essential and perhaps more difficult topic of discussion when a child is at risk for suicide or harming others. We need to consider some crucial facts about completed suicide, now the leading cause of death in children and adolescents and largely from guns. Most suicide attempts occur within 10 minutes of having a wave of suicidal thoughts. These waves of thoughts may be acted upon immediately when lethal means are available, with guns by far the most likely to result in death. It is therefore critical to assess access and counsel about lethal means in every family with a child reporting thoughts of killing themselves or others, or a history of violence or substance use. Even without imminent risk of self-harm, we can start a discussion about securing lethal means by saying, “It’s like wearing a seatbelt; you don’t expect a car crash, but if one happens, wearing a safety belt can greatly reduce injury. Guns are the most frequent cause of dying, so let’s make a plan to reduce access to those.”

Creating a written plan to deal with waves of suicidal thoughts is the basis of a Safety Plan. We can accurately remind families and youth that “When someone is struggling like this, sometimes suicidal feelings can show up and get worse fast. There are steps I routinely recommend to make things safer at home.”

It is important to assess the presence of guns in the primary home and other places the child spends time even if we have asked in the past, as things change. If firearms are present, even if locked up appropriately, when a child is having suicidal thoughts we can say, “What some gun owners in your situation do is store weapons elsewhere temporarily with someone they trust, at a self-storage unit, gun or pawn shop, or police department. I’d like to talk over storage options like that with you.” If the child themself owns the firearm, they need to agree with a removal or lock up plan for giving up their access.

If the gun owner is unwilling to remove firearms, even temporarily, we can ask them to lock them up separately from ammunition, a move that alone reduces danger a lot, and ensure the child has no access to the keys or combination. Better yet, we can ask, “Would you be willing to ask someone who doesn’t live in your home to hold the keys or to change the combination temporarily or at least store the ammunition?” They could also remove from the home a critical component of the gun so that it can’t fire, such as the slide or firing pin. If even those steps are not accepted, we can ask, “What other options would you be willing to consider to increase your child’s safety, at least until s/he is doing better?”

Whatever plan we negotiate with the family, as for any health behavior change strategy, it is more likely to be implemented if we summarize the specifics, write them down, and set a time-frame for carrying it out. We might say, “Let’s review who’s doing what and when: Dad will take the guns to his uncle’s house tomorrow and meanwhile, he will put them in the gun safe.” A follow-up call or contact soon, a key part of management of suicidal ideation, also signals how strongly we care about these safety measures and has been shown to increase implementation. We might call to say, “I wanted to check in and see how [you/your child] is doing and also ask how the plan is going that we talked about for gun storage.”

Discussions about firearms can spark strong emotions, especially if the family suspects political motivations. The Florida law prohibiting health care providers from discussing guns with patients was overturned but the thinking remains and may give us pause before having these important conversations. First of all, we need to stay calm and be prepared with key facts. The “sandwich” method is a useful approach to reduce resistance: start with something you can agree on (such as “What we hear on the news can make us all scared about safety”); then add the facts we want to convey (such as “You are actually less likely to get hurt in a break-in if you do not have a gun”); then conclude with a positive (such as “I can see that you are giving a lot of thought to how to keep your family safe”). Families generally trust our intentions and knowledge and appreciate rather than resent safety counseling when it is given in a nonjudgmental manner. Because we are protectors of child health, firearm safety must be an essential part of our anticipatory guidance.

Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS (www.CHADIS.com). She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.

*Wording suggestions adapted from https://www.hsph.harvard.edu/means-matter/recommendations/clinicians.

Caring for a child with autism is a long haul for families and not often a smooth ride. Medications can help improve child functioning and family quality of life but the evidence may require our careful consideration.

Although I am discussing medication treatment here, the best evidence-based treatments for autism symptoms such as poor social communication and repetitive restricted behavior (RRB) are behavioral (for example, applied behavior analysis), cognitive-behavioral therapy (CBT), and parent training. These modalities also augment the effectiveness of medications in many cases. Educational adjustments and specific therapies, when indicated, such as speech-language, occupational, and physical therapy are also beneficial.

Autism symptoms change with age from early regression, later to RRB, then depression, and they are complicated by coexisting conditions. Not surprisingly then, studying the effectiveness and side effects of medications is complex and guidance is in flux as reliable data emerge.

Howard_Barbara_J_BALT_2022_web.jpg

Because of the shortage of specialists and increasing prevalence of autism, we need to be prepared to manage, monitor, and sometimes start medications for our autistic patients. With great individual differences and the hopes and fears of distressed parents making them desperate for help, we need to be as evidence-based as possible to avoid serious side effects or delay effective behavioral treatments.

Our assistance is mainly to address the many co-occurring symptoms in autism: 37%-85% ADHD, 50% anxiety, 7.3% bipolar disorder, and 54.1% depression (by age 30). Many autistic children have problematic irritability, explosive episodes, repetitive or rigid routines, difficulty with social engagement, or trouble sleeping.

We need to be clear with families about the evidence and, whenever possible, use our own time-limited trials with placebos and objective measures that target symptoms and goals for improvement. This is complicated by that fact that the child may have trouble communicating about how they feel, have hypo- or hypersensitivity to feelings, as well as confounding coexisting conditions.

The Food and Drug Administration has approved the atypical antipsychotics risperidone (ages 5-16) and aripiprazole (ages 6-17) for reducing symptoms of irritability by 25%-50% – such as agitation, stereotypy, anger outbursts, self-injurious behavior, and hyperactivity within 8 weeks. The Aberrant Behavior Checklist can be used for monitoring. These benefits are largest with behavior therapy and at doses of 1.25-1.75  mg/day (risperidone) or 2-15 mg/day (aripiprazole). Unfortunately, side effects of these medications include somnolence, increased appetite and weight gain (average of 5.1 kg), abnormal blood lipids and glucose, dyskinesia, and elevated prolactin (sometimes galactorrhea). Aripiprazole is equivalent to risperidone for irritability, has less prolactin and fewer metabolic effects, but sometimes has extrapyramidal symptoms. Other second-generation atypical antipsychotics have less evidence but may have fewer side effects. With careful monitoring, these medications can make a major difference in child behavior.

ADHD symptoms often respond to methylphenidate within 4 weeks but at a lower dose and with more side effects of irritability, social withdrawal, and emotional outbursts than for children with ADHD without autism. Formulations such as liquid (short or long acting) or dermal patch may facilitate the important small-dose adjustments and slow ramp-up we should use with checklist monitoring (for example, Vanderbilt Assessment). Atomoxetine also reduces hyperactivity, especially when used with parent training, but has associated nausea, anorexia, early awakening, and rare unpredictable liver failure. Mixed amphetamine salts have not been studied. Clonidine (oral or patch) and guanfacine extended release have also shown some effectiveness for hyperarousal, social interaction, and sleep although they can cause drowsiness/hypotension.

Sleep issues such as sleep onset, duration, and disruptions can improve with melatonin, especially combined with CBT, and it can even sometimes help with anxiety, rigidity, and communication. Use a certified brand and prevent accidental ingestion of gummy forms. Note that obstructive sleep apnea is significantly more common in children with autism spectrum disorder (ASD) and should be evaluated if there are signs. The Childhood Sleep Questionnaire can be used to monitor.

There aren’t data available for selective serotonin reuptake inhibitors in treating depression and anxiety in autistic children but CBT may help. Buspirone improved RRB (at 2.5 mg b.i.d.) but did not help mood. Mood-stabilizing antiepileptics have had mixed results (valproate reduced irritability but with serious side effects), no benefits (lamotrigine and levetiracetam), or no trials (lithium, oxcarbazepine, and topiramate). In spite of this, a Cochrane report recommends antidepressants “on a case by case basis” for children with ASD, keeping in mind the higher risks of behavioral activation (consider comorbid bipolar disorder), irritability, akathisia, and sleep disturbance. We can monitor with Short Moods and Feelings Questionnaire and Problem Behavior Checklist.

NMDA and GABA receptors are implicated in the genesis of ASD. Bumetanide, a GABA modulator, at 1 mg b.i.d., improved social communication and restricted interests, but had dose-related hypokalemia, increased urination, dehydration, loss of appetite, and asthenia. Donepezil (cholinesterase inhibitor) in small studies improved autism scores and expressive/receptive language. N-acetylcysteine, D-cycloserine, and arbaclofen did not show efficacy.

Currently, 64% of children with ASD are prescribed one psychotropic medication, 35% more than two classes, and 15% more than three. While we may look askance at polypharmacy, several medications not effective as monotherapy for children with ASD have significant effects in combination with risperidone; notably memantine, riluzole, N-acetylcysteine, amantadine, topiramate, and buspirone, compared with placebo. Memantine alone has shown benefits in 60% of autistic patients on social, language, and self-stimulatory behaviors at 2.5-30 mg; effective enough that 80% chose continuation.

Families often use complementary or alternative medicines (CAM) so we need to ask about them because CAM may interact with prescribed drugs or complicate determining the source of side effects or benefits. Oxytocin has promising but inconclusive data for improving social cognition but only for 3-8 year olds. Omega-3 fatty acid had benefits for young child stereotypy and lethargy but only by parent report. Vitamin B12, folinic acid, vitamin D3, and digestive enzymes may help but lack data. It is important that families not replace evidence-based treatments with CAM when there are significant symptoms needing treatment.

Being a person with autism, beyond the stress of rigid routines and social difficulties, may include being a target of physical or sexual abuse or bullying, which are risks for suicide. Suicide is eightfold greater in people with autism, especially those who are high functioning; thus, we need to include children with ASD in our routine suicide screening.

Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.

References

Goel R et al. Int Rev Psychiatry. 2018;30(1):78-95.

Stepanova E et al. Dialogues Clin Neurosci. 2017;19(4):395-402.

Caring for a child with autism is a long haul for families and not often a smooth ride. Medications can help improve child functioning and family quality of life but the evidence may require our careful consideration.

Although I am discussing medication treatment here, the best evidence-based treatments for autism symptoms such as poor social communication and repetitive restricted behavior (RRB) are behavioral (for example, applied behavior analysis), cognitive-behavioral therapy (CBT), and parent training. These modalities also augment the effectiveness of medications in many cases. Educational adjustments and specific therapies, when indicated, such as speech-language, occupational, and physical therapy are also beneficial.

Autism symptoms change with age from early regression, later to RRB, then depression, and they are complicated by coexisting conditions. Not surprisingly then, studying the effectiveness and side effects of medications is complex and guidance is in flux as reliable data emerge.

Howard_Barbara_J_BALT_2022_web.jpg

Because of the shortage of specialists and increasing prevalence of autism, we need to be prepared to manage, monitor, and sometimes start medications for our autistic patients. With great individual differences and the hopes and fears of distressed parents making them desperate for help, we need to be as evidence-based as possible to avoid serious side effects or delay effective behavioral treatments.

Our assistance is mainly to address the many co-occurring symptoms in autism: 37%-85% ADHD, 50% anxiety, 7.3% bipolar disorder, and 54.1% depression (by age 30). Many autistic children have problematic irritability, explosive episodes, repetitive or rigid routines, difficulty with social engagement, or trouble sleeping.

We need to be clear with families about the evidence and, whenever possible, use our own time-limited trials with placebos and objective measures that target symptoms and goals for improvement. This is complicated by that fact that the child may have trouble communicating about how they feel, have hypo- or hypersensitivity to feelings, as well as confounding coexisting conditions.

The Food and Drug Administration has approved the atypical antipsychotics risperidone (ages 5-16) and aripiprazole (ages 6-17) for reducing symptoms of irritability by 25%-50% – such as agitation, stereotypy, anger outbursts, self-injurious behavior, and hyperactivity within 8 weeks. The Aberrant Behavior Checklist can be used for monitoring. These benefits are largest with behavior therapy and at doses of 1.25-1.75  mg/day (risperidone) or 2-15 mg/day (aripiprazole). Unfortunately, side effects of these medications include somnolence, increased appetite and weight gain (average of 5.1 kg), abnormal blood lipids and glucose, dyskinesia, and elevated prolactin (sometimes galactorrhea). Aripiprazole is equivalent to risperidone for irritability, has less prolactin and fewer metabolic effects, but sometimes has extrapyramidal symptoms. Other second-generation atypical antipsychotics have less evidence but may have fewer side effects. With careful monitoring, these medications can make a major difference in child behavior.

ADHD symptoms often respond to methylphenidate within 4 weeks but at a lower dose and with more side effects of irritability, social withdrawal, and emotional outbursts than for children with ADHD without autism. Formulations such as liquid (short or long acting) or dermal patch may facilitate the important small-dose adjustments and slow ramp-up we should use with checklist monitoring (for example, Vanderbilt Assessment). Atomoxetine also reduces hyperactivity, especially when used with parent training, but has associated nausea, anorexia, early awakening, and rare unpredictable liver failure. Mixed amphetamine salts have not been studied. Clonidine (oral or patch) and guanfacine extended release have also shown some effectiveness for hyperarousal, social interaction, and sleep although they can cause drowsiness/hypotension.

Sleep issues such as sleep onset, duration, and disruptions can improve with melatonin, especially combined with CBT, and it can even sometimes help with anxiety, rigidity, and communication. Use a certified brand and prevent accidental ingestion of gummy forms. Note that obstructive sleep apnea is significantly more common in children with autism spectrum disorder (ASD) and should be evaluated if there are signs. The Childhood Sleep Questionnaire can be used to monitor.

There aren’t data available for selective serotonin reuptake inhibitors in treating depression and anxiety in autistic children but CBT may help. Buspirone improved RRB (at 2.5 mg b.i.d.) but did not help mood. Mood-stabilizing antiepileptics have had mixed results (valproate reduced irritability but with serious side effects), no benefits (lamotrigine and levetiracetam), or no trials (lithium, oxcarbazepine, and topiramate). In spite of this, a Cochrane report recommends antidepressants “on a case by case basis” for children with ASD, keeping in mind the higher risks of behavioral activation (consider comorbid bipolar disorder), irritability, akathisia, and sleep disturbance. We can monitor with Short Moods and Feelings Questionnaire and Problem Behavior Checklist.

NMDA and GABA receptors are implicated in the genesis of ASD. Bumetanide, a GABA modulator, at 1 mg b.i.d., improved social communication and restricted interests, but had dose-related hypokalemia, increased urination, dehydration, loss of appetite, and asthenia. Donepezil (cholinesterase inhibitor) in small studies improved autism scores and expressive/receptive language. N-acetylcysteine, D-cycloserine, and arbaclofen did not show efficacy.

Currently, 64% of children with ASD are prescribed one psychotropic medication, 35% more than two classes, and 15% more than three. While we may look askance at polypharmacy, several medications not effective as monotherapy for children with ASD have significant effects in combination with risperidone; notably memantine, riluzole, N-acetylcysteine, amantadine, topiramate, and buspirone, compared with placebo. Memantine alone has shown benefits in 60% of autistic patients on social, language, and self-stimulatory behaviors at 2.5-30 mg; effective enough that 80% chose continuation.

Families often use complementary or alternative medicines (CAM) so we need to ask about them because CAM may interact with prescribed drugs or complicate determining the source of side effects or benefits. Oxytocin has promising but inconclusive data for improving social cognition but only for 3-8 year olds. Omega-3 fatty acid had benefits for young child stereotypy and lethargy but only by parent report. Vitamin B12, folinic acid, vitamin D3, and digestive enzymes may help but lack data. It is important that families not replace evidence-based treatments with CAM when there are significant symptoms needing treatment.

Being a person with autism, beyond the stress of rigid routines and social difficulties, may include being a target of physical or sexual abuse or bullying, which are risks for suicide. Suicide is eightfold greater in people with autism, especially those who are high functioning; thus, we need to include children with ASD in our routine suicide screening.

Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.

References

Goel R et al. Int Rev Psychiatry. 2018;30(1):78-95.

Stepanova E et al. Dialogues Clin Neurosci. 2017;19(4):395-402.

Caring for a child with autism is a long haul for families and not often a smooth ride. Medications can help improve child functioning and family quality of life but the evidence may require our careful consideration.

Although I am discussing medication treatment here, the best evidence-based treatments for autism symptoms such as poor social communication and repetitive restricted behavior (RRB) are behavioral (for example, applied behavior analysis), cognitive-behavioral therapy (CBT), and parent training. These modalities also augment the effectiveness of medications in many cases. Educational adjustments and specific therapies, when indicated, such as speech-language, occupational, and physical therapy are also beneficial.

Autism symptoms change with age from early regression, later to RRB, then depression, and they are complicated by coexisting conditions. Not surprisingly then, studying the effectiveness and side effects of medications is complex and guidance is in flux as reliable data emerge.

Howard_Barbara_J_BALT_2022_web.jpg

Because of the shortage of specialists and increasing prevalence of autism, we need to be prepared to manage, monitor, and sometimes start medications for our autistic patients. With great individual differences and the hopes and fears of distressed parents making them desperate for help, we need to be as evidence-based as possible to avoid serious side effects or delay effective behavioral treatments.

Our assistance is mainly to address the many co-occurring symptoms in autism: 37%-85% ADHD, 50% anxiety, 7.3% bipolar disorder, and 54.1% depression (by age 30). Many autistic children have problematic irritability, explosive episodes, repetitive or rigid routines, difficulty with social engagement, or trouble sleeping.

We need to be clear with families about the evidence and, whenever possible, use our own time-limited trials with placebos and objective measures that target symptoms and goals for improvement. This is complicated by that fact that the child may have trouble communicating about how they feel, have hypo- or hypersensitivity to feelings, as well as confounding coexisting conditions.

The Food and Drug Administration has approved the atypical antipsychotics risperidone (ages 5-16) and aripiprazole (ages 6-17) for reducing symptoms of irritability by 25%-50% – such as agitation, stereotypy, anger outbursts, self-injurious behavior, and hyperactivity within 8 weeks. The Aberrant Behavior Checklist can be used for monitoring. These benefits are largest with behavior therapy and at doses of 1.25-1.75  mg/day (risperidone) or 2-15 mg/day (aripiprazole). Unfortunately, side effects of these medications include somnolence, increased appetite and weight gain (average of 5.1 kg), abnormal blood lipids and glucose, dyskinesia, and elevated prolactin (sometimes galactorrhea). Aripiprazole is equivalent to risperidone for irritability, has less prolactin and fewer metabolic effects, but sometimes has extrapyramidal symptoms. Other second-generation atypical antipsychotics have less evidence but may have fewer side effects. With careful monitoring, these medications can make a major difference in child behavior.

ADHD symptoms often respond to methylphenidate within 4 weeks but at a lower dose and with more side effects of irritability, social withdrawal, and emotional outbursts than for children with ADHD without autism. Formulations such as liquid (short or long acting) or dermal patch may facilitate the important small-dose adjustments and slow ramp-up we should use with checklist monitoring (for example, Vanderbilt Assessment). Atomoxetine also reduces hyperactivity, especially when used with parent training, but has associated nausea, anorexia, early awakening, and rare unpredictable liver failure. Mixed amphetamine salts have not been studied. Clonidine (oral or patch) and guanfacine extended release have also shown some effectiveness for hyperarousal, social interaction, and sleep although they can cause drowsiness/hypotension.

Sleep issues such as sleep onset, duration, and disruptions can improve with melatonin, especially combined with CBT, and it can even sometimes help with anxiety, rigidity, and communication. Use a certified brand and prevent accidental ingestion of gummy forms. Note that obstructive sleep apnea is significantly more common in children with autism spectrum disorder (ASD) and should be evaluated if there are signs. The Childhood Sleep Questionnaire can be used to monitor.

There aren’t data available for selective serotonin reuptake inhibitors in treating depression and anxiety in autistic children but CBT may help. Buspirone improved RRB (at 2.5 mg b.i.d.) but did not help mood. Mood-stabilizing antiepileptics have had mixed results (valproate reduced irritability but with serious side effects), no benefits (lamotrigine and levetiracetam), or no trials (lithium, oxcarbazepine, and topiramate). In spite of this, a Cochrane report recommends antidepressants “on a case by case basis” for children with ASD, keeping in mind the higher risks of behavioral activation (consider comorbid bipolar disorder), irritability, akathisia, and sleep disturbance. We can monitor with Short Moods and Feelings Questionnaire and Problem Behavior Checklist.

NMDA and GABA receptors are implicated in the genesis of ASD. Bumetanide, a GABA modulator, at 1 mg b.i.d., improved social communication and restricted interests, but had dose-related hypokalemia, increased urination, dehydration, loss of appetite, and asthenia. Donepezil (cholinesterase inhibitor) in small studies improved autism scores and expressive/receptive language. N-acetylcysteine, D-cycloserine, and arbaclofen did not show efficacy.

Currently, 64% of children with ASD are prescribed one psychotropic medication, 35% more than two classes, and 15% more than three. While we may look askance at polypharmacy, several medications not effective as monotherapy for children with ASD have significant effects in combination with risperidone; notably memantine, riluzole, N-acetylcysteine, amantadine, topiramate, and buspirone, compared with placebo. Memantine alone has shown benefits in 60% of autistic patients on social, language, and self-stimulatory behaviors at 2.5-30 mg; effective enough that 80% chose continuation.

Families often use complementary or alternative medicines (CAM) so we need to ask about them because CAM may interact with prescribed drugs or complicate determining the source of side effects or benefits. Oxytocin has promising but inconclusive data for improving social cognition but only for 3-8 year olds. Omega-3 fatty acid had benefits for young child stereotypy and lethargy but only by parent report. Vitamin B12, folinic acid, vitamin D3, and digestive enzymes may help but lack data. It is important that families not replace evidence-based treatments with CAM when there are significant symptoms needing treatment.

Being a person with autism, beyond the stress of rigid routines and social difficulties, may include being a target of physical or sexual abuse or bullying, which are risks for suicide. Suicide is eightfold greater in people with autism, especially those who are high functioning; thus, we need to include children with ASD in our routine suicide screening.

Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS. She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. E-mail her at pdnews@mdedge.com.

References

Goel R et al. Int Rev Psychiatry. 2018;30(1):78-95.

Stepanova E et al. Dialogues Clin Neurosci. 2017;19(4):395-402.

We are all seeing more children on the autism spectrum than we ever expected. With a Centers for Disease Control–estimated prevalence of 1 in 44, the average pediatrician will be caring for 45 children with autism. It may feel like even more as parents bring in their children with related concerns or fears. Early entry into services has been shown to improve functioning, making early identification important. However, screening at the youngest ages has important limitations.

Sharing a concern about possible autism with parents is a painful aspect of primary care practice. We want to get it right, not frighten parents unnecessarily, nor miss children and delay intervention.

Howard_Barbara_J_BALT_2022_web.jpg

Autism screening is recommended by the American Academy of Pediatrics at 18- and 24-month pediatric well-child visits. There are several reasons for screening repeatedly: Autism symptoms emerge gradually in the toddler period; about 32% of children later found to have autism were developing in a typical pattern and appeared normal at 18 months only to regress by age 24 months; children may miss the 18 month screen; and all screens have false negatives as well as false positives. But even screening at these two ages is not enough.

One criticism of current screening tests pointed out by the U.S. Preventive Services Task Force has been a problem with the sample used to develop or validate the tool. Many test development studies included only children at risk by being in early intervention, siblings of children with diagnosed autism, or children only failing the screening tests rather than a community sample that the screen in actually used for.

Another obstacle to prediction of autism diagnoses made years later is that some children may not have had any clinical manifestations at the younger age even as judged by the best gold standard testing and, thus, negative screens were ambiguous. Additionally, data from prospective studies of high-risk infant siblings reveal that only 18% of children diagnosed with autism at 36 months were given that diagnosis at 18 months of age despite use of comprehensive diagnostic assessments.

Prevalence is also reported as 30% higher at age 8-12 years as at 3-7 years on gold-standard tests. Children identified later with autism tend to have milder symptoms and higher cognitive functioning. Therefore, we need some humility in thinking we can identify children as early as 18 months; rather, we need to use the best available methods at all ages and remain vigilant to symptoms as they evolve as well as to new screening and testing measures.

The most commonly used parent report screen is the 20-item Modified Checklist for Autism in Toddlers–Revised (M-CHAT-R), a modification of the original CHAT screen. To have reasonable positive predictive value, the M-CHAT-R authors recommend a clinician or trained staff member conduct a structured follow-up interview with the parent when the M-CHAT-R has a score of 3-7. Scores of 8 or more reflect enough symptoms to more strongly predict an autism diagnosis and thus the interview may be skipped in those cases. The recommended two-step process is called M-CHAT-R/F. At 18 months without the R/F, a positive M-CHAT-R only is associated with an autism diagnosis 27% of the time (PPV, 0.27); which is unacceptable for primary care use.

Unfortunately, the M-CHAT-R/F appears to be less accurate for 18-month-olds than 24-month-olds, in part because its yes/no response options are harder for a caregiver to answer, especially for behaviors just developing, or because of lack of experience with toddlers.

An alternative modification of the original CHAT called the Quantitative CHAT or Q-CHAT-10 has a range of response options for the caregiver; for example, always/usually/sometimes/rarely/never or many times a day/a few times a day/a few times a week/less than once a week/never. The authors of the Q-CHAT-10, however, recommend a summary pass/fail result for ease of use rather than using the range of response option values in the score. We recently published a study testing accuracy using add-up scoring that utilized the entire range of response option values, called Q-CHAT-10-O (O for ordinal), for children 16-20 months old as well as cartoon depictions of the behaviors. Our study also included diagnostic testing of screen-negative as well as screen-positive children to accurately calculate sensitivity and specificity for this method. In our study, Q-CHAT-10-O with a cutoff score greater than 11 showed higher sensitivity (0.63) than either M-CHAT-R/F (0.34) or Q-CHAT-10 (0.31) for this age range although the PPV (0.35) and negative predictive value (0.92) were comparable with M-CHAT R/F. Although Q-CHAT-10-O sensitivity (0.63) is less than M-CHAT-R (without follow-up; 0.73) and specificity (0.79) is less than the two-stage R/F procedure (0.90), on balance, it is more accurate and more practical for a primary care population. After 20 months of age, the M-CHAT-R/F has adequate accuracy to rescreen, if indicated, and for the subsequent 24 month screening. Language items are often of highest value in predicting outcomes in several tools including in the screen we are now validating for 18 month olds.

The Q-CHAT-10-O with ordinal scoring and pictures can also be recommended because it shows advantages over M-CHAT-R/F with half the number of items (10 vs. 20), no requirement for a follow-up interview, and improved sensitivity. Unlike M-CHAT-R, it also contributes to equity in screening because results did not differ depending on race or socioeconomic background.

Is there an even better way to detect autism in primary care? In 2022 an article was published regarding an exciting method of early autism detection called the Social Attention and Communication Surveillance–Revised (SACS-R), an eight-item observation checklist completed at public health nurse check-ups in Australia. The observers had 4 years of nursing degree education and a 3.5-hour training session.

The SACS-R and the preschool version (for older children) had significant associations with diagnostic testing at 12, 18, 24, and 42 months. The SACS-R had excellent PPV (82.6%), NPV (98.7%), and specificity (99.6%) and moderate sensitivity (61.5%) when used between 12 and 24 months of age. Pointing, eye contact, waving “bye, bye,” social communication by showing, and pretend play were the key indicators for observations at 18 months, with absence of three or more indicating risk for autism. Different key indicators were used at the other ages, reflecting the evolution of autism symptoms. This hybrid (observation and scoring) surveillance method by professionals shows hopeful data for the critical ability to identify children at risk for autism in primary care very early but requires more than parent report, that is, new levels of autism-specific clinician training and direct observations at multiple visits over time.

The takeaway is to remember that we should all watch closely for early signs of autism, informed by research on the key findings that a professional might observe, as well as by using the best screens available. We should remember that both false positives and false negatives are inherent in screening, especially at the youngest ages. We need to combine our concern with the parent’s concern as well as screen results and be sure to follow-up closely as symptoms can change in even a few months. Many factors may prevent a family from returning to see us or following our advice to go for testing or intervention, so tracking the child and their service use is an important part of the good care we strive to provide children with autism.

Other screening tools

You may have heard of other parent-report screens for autism. It is important to compare their accuracy specifically for 18-month-olds in a community setting.

• The Infant Toddler Checklist (https://psychology-tools.com/test/infant-toddler-checklist) has moderate overall psychometrics with sensitivity ranging from 0.55 to 0.77; specificity from 0.42 to 0.85; PPV from 0.20 to 0.55; and NPV from 0.83 to 0.94. However, the data were based on a sample including both community-dwelling toddlers and those with a family history of autism.
• The Brief Infant-Toddler Social and Emotional Assessment (https://eprovide.mapi-trust.org/instruments/brief-infant-toddler-social-emotional-assessment/) – the screen’s four autism-specific scales had high specificity (84%-90%) but low sensitivity (40%-52%).
• Canvas Dx (https://canvasdx.com/) from the Cognoa company is not a parent-report measure but rather a three-part evaluation including an app-based parent questionnaire, parent uploads of home videos analyzed by a specialist, and a 13- to 15-item primary care physician observational checklist. There were 56 diagnosed of the 426 children in the 18- to 24-month-old range from a sample of children presenting with parent or clinician concerns rather than from a community sample.

Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS (www.CHADIS.com). She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. Email her at pdnews@mdedge.com.

References

Sturner R et al. Autism screening at 18 months of age: A comparison of the Q-CHAT-10 and M-CHAT screeners. Molecular Autism. Jan 3;13(1):2.

Barbaro J et al. Diagnostic accuracy of the Social Attention and Communication Surveillance–Revised with preschool tool for early autism detection in very young children. JAMA Netw Open. 2022;5(3):e2146415.

We are all seeing more children on the autism spectrum than we ever expected. With a Centers for Disease Control–estimated prevalence of 1 in 44, the average pediatrician will be caring for 45 children with autism. It may feel like even more as parents bring in their children with related concerns or fears. Early entry into services has been shown to improve functioning, making early identification important. However, screening at the youngest ages has important limitations.

Sharing a concern about possible autism with parents is a painful aspect of primary care practice. We want to get it right, not frighten parents unnecessarily, nor miss children and delay intervention.

Howard_Barbara_J_BALT_2022_web.jpg

Autism screening is recommended by the American Academy of Pediatrics at 18- and 24-month pediatric well-child visits. There are several reasons for screening repeatedly: Autism symptoms emerge gradually in the toddler period; about 32% of children later found to have autism were developing in a typical pattern and appeared normal at 18 months only to regress by age 24 months; children may miss the 18 month screen; and all screens have false negatives as well as false positives. But even screening at these two ages is not enough.

One criticism of current screening tests pointed out by the U.S. Preventive Services Task Force has been a problem with the sample used to develop or validate the tool. Many test development studies included only children at risk by being in early intervention, siblings of children with diagnosed autism, or children only failing the screening tests rather than a community sample that the screen in actually used for.

Another obstacle to prediction of autism diagnoses made years later is that some children may not have had any clinical manifestations at the younger age even as judged by the best gold standard testing and, thus, negative screens were ambiguous. Additionally, data from prospective studies of high-risk infant siblings reveal that only 18% of children diagnosed with autism at 36 months were given that diagnosis at 18 months of age despite use of comprehensive diagnostic assessments.

Prevalence is also reported as 30% higher at age 8-12 years as at 3-7 years on gold-standard tests. Children identified later with autism tend to have milder symptoms and higher cognitive functioning. Therefore, we need some humility in thinking we can identify children as early as 18 months; rather, we need to use the best available methods at all ages and remain vigilant to symptoms as they evolve as well as to new screening and testing measures.

The most commonly used parent report screen is the 20-item Modified Checklist for Autism in Toddlers–Revised (M-CHAT-R), a modification of the original CHAT screen. To have reasonable positive predictive value, the M-CHAT-R authors recommend a clinician or trained staff member conduct a structured follow-up interview with the parent when the M-CHAT-R has a score of 3-7. Scores of 8 or more reflect enough symptoms to more strongly predict an autism diagnosis and thus the interview may be skipped in those cases. The recommended two-step process is called M-CHAT-R/F. At 18 months without the R/F, a positive M-CHAT-R only is associated with an autism diagnosis 27% of the time (PPV, 0.27); which is unacceptable for primary care use.

Unfortunately, the M-CHAT-R/F appears to be less accurate for 18-month-olds than 24-month-olds, in part because its yes/no response options are harder for a caregiver to answer, especially for behaviors just developing, or because of lack of experience with toddlers.

An alternative modification of the original CHAT called the Quantitative CHAT or Q-CHAT-10 has a range of response options for the caregiver; for example, always/usually/sometimes/rarely/never or many times a day/a few times a day/a few times a week/less than once a week/never. The authors of the Q-CHAT-10, however, recommend a summary pass/fail result for ease of use rather than using the range of response option values in the score. We recently published a study testing accuracy using add-up scoring that utilized the entire range of response option values, called Q-CHAT-10-O (O for ordinal), for children 16-20 months old as well as cartoon depictions of the behaviors. Our study also included diagnostic testing of screen-negative as well as screen-positive children to accurately calculate sensitivity and specificity for this method. In our study, Q-CHAT-10-O with a cutoff score greater than 11 showed higher sensitivity (0.63) than either M-CHAT-R/F (0.34) or Q-CHAT-10 (0.31) for this age range although the PPV (0.35) and negative predictive value (0.92) were comparable with M-CHAT R/F. Although Q-CHAT-10-O sensitivity (0.63) is less than M-CHAT-R (without follow-up; 0.73) and specificity (0.79) is less than the two-stage R/F procedure (0.90), on balance, it is more accurate and more practical for a primary care population. After 20 months of age, the M-CHAT-R/F has adequate accuracy to rescreen, if indicated, and for the subsequent 24 month screening. Language items are often of highest value in predicting outcomes in several tools including in the screen we are now validating for 18 month olds.

The Q-CHAT-10-O with ordinal scoring and pictures can also be recommended because it shows advantages over M-CHAT-R/F with half the number of items (10 vs. 20), no requirement for a follow-up interview, and improved sensitivity. Unlike M-CHAT-R, it also contributes to equity in screening because results did not differ depending on race or socioeconomic background.

Is there an even better way to detect autism in primary care? In 2022 an article was published regarding an exciting method of early autism detection called the Social Attention and Communication Surveillance–Revised (SACS-R), an eight-item observation checklist completed at public health nurse check-ups in Australia. The observers had 4 years of nursing degree education and a 3.5-hour training session.

The SACS-R and the preschool version (for older children) had significant associations with diagnostic testing at 12, 18, 24, and 42 months. The SACS-R had excellent PPV (82.6%), NPV (98.7%), and specificity (99.6%) and moderate sensitivity (61.5%) when used between 12 and 24 months of age. Pointing, eye contact, waving “bye, bye,” social communication by showing, and pretend play were the key indicators for observations at 18 months, with absence of three or more indicating risk for autism. Different key indicators were used at the other ages, reflecting the evolution of autism symptoms. This hybrid (observation and scoring) surveillance method by professionals shows hopeful data for the critical ability to identify children at risk for autism in primary care very early but requires more than parent report, that is, new levels of autism-specific clinician training and direct observations at multiple visits over time.

The takeaway is to remember that we should all watch closely for early signs of autism, informed by research on the key findings that a professional might observe, as well as by using the best screens available. We should remember that both false positives and false negatives are inherent in screening, especially at the youngest ages. We need to combine our concern with the parent’s concern as well as screen results and be sure to follow-up closely as symptoms can change in even a few months. Many factors may prevent a family from returning to see us or following our advice to go for testing or intervention, so tracking the child and their service use is an important part of the good care we strive to provide children with autism.

Other screening tools

You may have heard of other parent-report screens for autism. It is important to compare their accuracy specifically for 18-month-olds in a community setting.

• The Infant Toddler Checklist (https://psychology-tools.com/test/infant-toddler-checklist) has moderate overall psychometrics with sensitivity ranging from 0.55 to 0.77; specificity from 0.42 to 0.85; PPV from 0.20 to 0.55; and NPV from 0.83 to 0.94. However, the data were based on a sample including both community-dwelling toddlers and those with a family history of autism.
• The Brief Infant-Toddler Social and Emotional Assessment (https://eprovide.mapi-trust.org/instruments/brief-infant-toddler-social-emotional-assessment/) – the screen’s four autism-specific scales had high specificity (84%-90%) but low sensitivity (40%-52%).
• Canvas Dx (https://canvasdx.com/) from the Cognoa company is not a parent-report measure but rather a three-part evaluation including an app-based parent questionnaire, parent uploads of home videos analyzed by a specialist, and a 13- to 15-item primary care physician observational checklist. There were 56 diagnosed of the 426 children in the 18- to 24-month-old range from a sample of children presenting with parent or clinician concerns rather than from a community sample.

Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS (www.CHADIS.com). She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. Email her at pdnews@mdedge.com.

References

Sturner R et al. Autism screening at 18 months of age: A comparison of the Q-CHAT-10 and M-CHAT screeners. Molecular Autism. Jan 3;13(1):2.

Barbaro J et al. Diagnostic accuracy of the Social Attention and Communication Surveillance–Revised with preschool tool for early autism detection in very young children. JAMA Netw Open. 2022;5(3):e2146415.

We are all seeing more children on the autism spectrum than we ever expected. With a Centers for Disease Control–estimated prevalence of 1 in 44, the average pediatrician will be caring for 45 children with autism. It may feel like even more as parents bring in their children with related concerns or fears. Early entry into services has been shown to improve functioning, making early identification important. However, screening at the youngest ages has important limitations.

Sharing a concern about possible autism with parents is a painful aspect of primary care practice. We want to get it right, not frighten parents unnecessarily, nor miss children and delay intervention.

Autism screening is recommended by the American Academy of Pediatrics at 18- and 24-month pediatric well-child visits. There are several reasons for screening repeatedly: Autism symptoms emerge gradually in the toddler period; about 32% of children later found to have autism were developing in a typical pattern and appeared normal at 18 months only to regress by age 24 months; children may miss the 18 month screen; and all screens have false negatives as well as false positives. But even screening at these two ages is not enough.

One criticism of current screening tests pointed out by the U.S. Preventive Services Task Force has been a problem with the sample used to develop or validate the tool. Many test development studies included only children at risk by being in early intervention, siblings of children with diagnosed autism, or children only failing the screening tests rather than a community sample that the screen in actually used for.

Another obstacle to prediction of autism diagnoses made years later is that some children may not have had any clinical manifestations at the younger age even as judged by the best gold standard testing and, thus, negative screens were ambiguous. Additionally, data from prospective studies of high-risk infant siblings reveal that only 18% of children diagnosed with autism at 36 months were given that diagnosis at 18 months of age despite use of comprehensive diagnostic assessments.

Prevalence is also reported as 30% higher at age 8-12 years as at 3-7 years on gold-standard tests. Children identified later with autism tend to have milder symptoms and higher cognitive functioning. Therefore, we need some humility in thinking we can identify children as early as 18 months; rather, we need to use the best available methods at all ages and remain vigilant to symptoms as they evolve as well as to new screening and testing measures.

The most commonly used parent report screen is the 20-item Modified Checklist for Autism in Toddlers–Revised (M-CHAT-R), a modification of the original CHAT screen. To have reasonable positive predictive value, the M-CHAT-R authors recommend a clinician or trained staff member conduct a structured follow-up interview with the parent when the M-CHAT-R has a score of 3-7. Scores of 8 or more reflect enough symptoms to more strongly predict an autism diagnosis and thus the interview may be skipped in those cases. The recommended two-step process is called M-CHAT-R/F. At 18 months without the R/F, a positive M-CHAT-R only is associated with an autism diagnosis 27% of the time (PPV, 0.27); which is unacceptable for primary care use.

Unfortunately, the M-CHAT-R/F appears to be less accurate for 18-month-olds than 24-month-olds, in part because its yes/no response options are harder for a caregiver to answer, especially for behaviors just developing, or because of lack of experience with toddlers.

An alternative modification of the original CHAT called the Quantitative CHAT or Q-CHAT-10 has a range of response options for the caregiver; for example, always/usually/sometimes/rarely/never or many times a day/a few times a day/a few times a week/less than once a week/never. The authors of the Q-CHAT-10, however, recommend a summary pass/fail result for ease of use rather than using the range of response option values in the score. We recently published a study testing accuracy using add-up scoring that utilized the entire range of response option values, called Q-CHAT-10-O (O for ordinal), for children 16-20 months old as well as cartoon depictions of the behaviors. Our study also included diagnostic testing of screen-negative as well as screen-positive children to accurately calculate sensitivity and specificity for this method. In our study, Q-CHAT-10-O with a cutoff score greater than 11 showed higher sensitivity (0.63) than either M-CHAT-R/F (0.34) or Q-CHAT-10 (0.31) for this age range although the PPV (0.35) and negative predictive value (0.92) were comparable with M-CHAT R/F. Although Q-CHAT-10-O sensitivity (0.63) is less than M-CHAT-R (without follow-up; 0.73) and specificity (0.79) is less than the two-stage R/F procedure (0.90), on balance, it is more accurate and more practical for a primary care population. After 20 months of age, the M-CHAT-R/F has adequate accuracy to rescreen, if indicated, and for the subsequent 24 month screening. Language items are often of highest value in predicting outcomes in several tools including in the screen we are now validating for 18 month olds.

The Q-CHAT-10-O with ordinal scoring and pictures can also be recommended because it shows advantages over M-CHAT-R/F with half the number of items (10 vs. 20), no requirement for a follow-up interview, and improved sensitivity. Unlike M-CHAT-R, it also contributes to equity in screening because results did not differ depending on race or socioeconomic background.

Is there an even better way to detect autism in primary care? In 2022 an article was published regarding an exciting method of early autism detection called the Social Attention and Communication Surveillance–Revised (SACS-R), an eight-item observation checklist completed at public health nurse check-ups in Australia. The observers had 4 years of nursing degree education and a 3.5-hour training session.

The SACS-R and the preschool version (for older children) had significant associations with diagnostic testing at 12, 18, 24, and 42 months. The SACS-R had excellent PPV (82.6%), NPV (98.7%), and specificity (99.6%) and moderate sensitivity (61.5%) when used between 12 and 24 months of age. Pointing, eye contact, waving “bye, bye,” social communication by showing, and pretend play were the key indicators for observations at 18 months, with absence of three or more indicating risk for autism. Different key indicators were used at the other ages, reflecting the evolution of autism symptoms. This hybrid (observation and scoring) surveillance method by professionals shows hopeful data for the critical ability to identify children at risk for autism in primary care very early but requires more than parent report, that is, new levels of autism-specific clinician training and direct observations at multiple visits over time.

The takeaway is to remember that we should all watch closely for early signs of autism, informed by research on the key findings that a professional might observe, as well as by using the best screens available. We should remember that both false positives and false negatives are inherent in screening, especially at the youngest ages. We need to combine our concern with the parent’s concern as well as screen results and be sure to follow-up closely as symptoms can change in even a few months. Many factors may prevent a family from returning to see us or following our advice to go for testing or intervention, so tracking the child and their service use is an important part of the good care we strive to provide children with autism.

Other screening tools

You may have heard of other parent-report screens for autism. It is important to compare their accuracy specifically for 18-month-olds in a community setting.

• The Infant Toddler Checklist (https://psychology-tools.com/test/infant-toddler-checklist) has moderate overall psychometrics with sensitivity ranging from 0.55 to 0.77; specificity from 0.42 to 0.85; PPV from 0.20 to 0.55; and NPV from 0.83 to 0.94. However, the data were based on a sample including both community-dwelling toddlers and those with a family history of autism.
• The Brief Infant-Toddler Social and Emotional Assessment (https://eprovide.mapi-trust.org/instruments/brief-infant-toddler-social-emotional-assessment/) – the screen’s four autism-specific scales had high specificity (84%-90%) but low sensitivity (40%-52%).
• Canvas Dx (https://canvasdx.com/) from the Cognoa company is not a parent-report measure but rather a three-part evaluation including an app-based parent questionnaire, parent uploads of home videos analyzed by a specialist, and a 13- to 15-item primary care physician observational checklist. There were 56 diagnosed of the 426 children in the 18- to 24-month-old range from a sample of children presenting with parent or clinician concerns rather than from a community sample.

Dr. Howard is assistant professor of pediatrics at Johns Hopkins University, Baltimore, and creator of CHADIS (www.CHADIS.com). She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to MDedge News. Email her at pdnews@mdedge.com.

References

Sturner R et al. Autism screening at 18 months of age: A comparison of the Q-CHAT-10 and M-CHAT screeners. Molecular Autism. Jan 3;13(1):2.

Barbaro J et al. Diagnostic accuracy of the Social Attention and Communication Surveillance–Revised with preschool tool for early autism detection in very young children. JAMA Netw Open. 2022;5(3):e2146415.