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The influence of social media on adolescents seeking autism diagnoses
A 16-year-old female presents for a self-identified concern around the possibility that she is experiencing an autism spectrum disorder. She relays to the developmental pediatrician that she has been learning a lot about autism on TikTok and through other social media sites, and has become strongly convinced that she meets medical criteria for this disorder.
A careful developmental history via a detailed interview with the mother reveals normal acquisition of early developmental milestones in addition to long-standing well-modulated eye contact felt to be paired fluidly with directed affect and gestures. The teen is described as having been an engaging toddler and preschooler, without restricted interests or repetitive behaviors, and having had no major challenges in grade school with behaviors, friendships, or academics.
During the pandemic, however, the teen became quite isolated. She developed anxiety with depression, and then started having some new repetitive arm movements within the last 12-18 months. In clinic, the teen makes robustly effortful arm-waving movements, which are noted to wane when she becomes more animated and excited during conversation, and to increase when she is less distracted by conversation and more focused on the movements.
She directs affect nicely toward her mother, while avoiding looking in the direction of the examiner until later in the evaluation when she becomes more relaxed. Prosody of speech and intonation are typical, and she describes having a close group of friends with whom she spends quite a bit of time.
The Autism Diagnostic Observation Schedule (ADOS-2 module 3) is used to gather structured observations, and these social presses yield flowing social engagement with the examiner, good understanding of humor, and overall excellent verbal and nonverbal communication skills. The teen describes hypervigilance around the emotions of others, a natural ease in understanding the perspectives of others, and a quick ability to read the energy of a room. She does have some interest in some more obscure online game forums, but her friends do as well, and she otherwise does not have a history of intrusive fixations. A social history reveals past significant verbal abuse in the home by means of her father during her first 11 years of life, which is described as quite traumatic.
After careful and thoughtful consideration (recognizing the known statistics around girls assigned female at birth, as well as nonbinary individuals and minoritized groups being underdiagnosed with autism), the history and observations are not felt to be consistent with autism, but with anxiety within the context of a trauma and stressor-related disorder. Even when accounting for the possibility of “masking,” the teen still does not meet criteria for autism based on history and presentation. The habit movements are not typical of usual stereotypies or of tics (which tend to increase with excitement and tend to have a more effortless quality), and are felt to possibly be functional in origin. Upon gently sharing these conclusions with the teen, she bursts into tears, stating her friends may now accuse her of lying, as she has already been claiming to have autism online and in person at school.
Countering social media diagnoses
This type of scenario is becoming increasingly common, with teens turning online primarily to social media accounts to gain knowledge around various neurologic and mental health conditions. Greater normalization of neurodiversity and greater access to high-quality information about neurodevelopmental differences is certainly progress, though unfortunately some online depictions of these conditions are simply not accurate. Many adolescents are keenly searching for both their personal identity and also a community through which they might feel wholly accepted, after experiencing some level of isolation during the pandemic followed by increased social discomfort in attempting to reintegrate into school life and society. Connecting the teen with a good-fit therapist and working to replace excessive screen time with exercise, outdoor activities, and in-person engagement with friends and family are also crucial interventions, though they can be incredibly difficult for families to achieve given various patient-specific and societal barriers. The overlap in symptomatology among anxiety, attention-deficit/hyperactivity disorder, and autism spectrum disorders is expansive, making it understandable that young people might misjudge their personal experience of life for a neurodevelopmental disorder for which they do not truly meet criteria. Increasing access to therapists well versed in trauma-informed care is a frequently referenced need, highlighted in this case.
Another case
In contrast to the case scenario above is that of a 19-year-old female presenting for a formal autism evaluation at the urging of her father, who has had concerns around her severe “shyness” throughout her life. He is concerned that she was not able to obtain a high school diploma despite appearing to have adequate cognitive skills, is currently quite isolated, and does not appear equipped to hold a job at this time. He describes her as having been a very quiet and self-directed young child who greatly benefited from the communication and social scaffolding provided by her slightly older and neurotypical sister. She has generally not had true friends, though she had no behavioral or academic difficulties in school other than seeming aloof and unusually quiet. Atypical social approaches have become more apparent over time, as relationship navigation has become more complex with age. She is noted to have frequent stereotyped hand-to-face movements throughout the evaluation, as well as a flat affect and unusual voice quality. She speaks slowly and softly, and while she does make eye contact, it is less well modulated than would be expected. She is very focused on her cat and online interests during conversation, and tends to give stilted answers to open-ended questions. During the interview portion of the ADOS, she demonstrates little insight into friendships and reports feeling very content on her own, though is open to the idea of relationships in the future and would like to learn how to achieve connections with others. Her father reports she tends to be generally quite blunt and has difficulty understanding humor and others’ perspectives. An autism diagnosis is made with the recommendation of application to Developmental Disability Services, given impaired adaptive skills, as a means of utilizing community-based supports to facilitate eventually obtaining a high school equivalency credential, a job, healthier living habits, and comfortable social outlets.
Discussion
It is crucial for providers to be aware of nuanced presentations of autism spectrum disorders that may have been missed in early childhood when social demands are less complicated, particularly in persons identified as female at birth, nonbinary individuals, and those belonging to minority groups. It is also important to address the widely acknowledged trend of adolescents turning to social media influencers for information around neurodevelopmental conditions, at a time in their lives when social anxiety and self-awareness are generally heightened. For an adolescent, a young social media influencer may feel like a more salient and reliable source of information than an adult with various letters after their name. A respectful relationship between a teen and a thoughtful primary care provider can help gain trust to foster open conversations around their concerns, which can further help determine if a referral to a psychologist or developmental pediatrician for a formal autism assessment is truly warranted, highlighting the need for increased diagnostic capacity for such. While it is certainly important for providers to keep an open mind and to have continued awareness around the concept of late autism diagnoses, it is wise to also be aware of this recent trend among adolescents as providers seek to guide youth toward appropriate therapies and services.
Dr. Roth is a developmental and behavioral pediatrician in Eugene, Ore. She has no conflicts of interest.
A 16-year-old female presents for a self-identified concern around the possibility that she is experiencing an autism spectrum disorder. She relays to the developmental pediatrician that she has been learning a lot about autism on TikTok and through other social media sites, and has become strongly convinced that she meets medical criteria for this disorder.
A careful developmental history via a detailed interview with the mother reveals normal acquisition of early developmental milestones in addition to long-standing well-modulated eye contact felt to be paired fluidly with directed affect and gestures. The teen is described as having been an engaging toddler and preschooler, without restricted interests or repetitive behaviors, and having had no major challenges in grade school with behaviors, friendships, or academics.
During the pandemic, however, the teen became quite isolated. She developed anxiety with depression, and then started having some new repetitive arm movements within the last 12-18 months. In clinic, the teen makes robustly effortful arm-waving movements, which are noted to wane when she becomes more animated and excited during conversation, and to increase when she is less distracted by conversation and more focused on the movements.
She directs affect nicely toward her mother, while avoiding looking in the direction of the examiner until later in the evaluation when she becomes more relaxed. Prosody of speech and intonation are typical, and she describes having a close group of friends with whom she spends quite a bit of time.
The Autism Diagnostic Observation Schedule (ADOS-2 module 3) is used to gather structured observations, and these social presses yield flowing social engagement with the examiner, good understanding of humor, and overall excellent verbal and nonverbal communication skills. The teen describes hypervigilance around the emotions of others, a natural ease in understanding the perspectives of others, and a quick ability to read the energy of a room. She does have some interest in some more obscure online game forums, but her friends do as well, and she otherwise does not have a history of intrusive fixations. A social history reveals past significant verbal abuse in the home by means of her father during her first 11 years of life, which is described as quite traumatic.
After careful and thoughtful consideration (recognizing the known statistics around girls assigned female at birth, as well as nonbinary individuals and minoritized groups being underdiagnosed with autism), the history and observations are not felt to be consistent with autism, but with anxiety within the context of a trauma and stressor-related disorder. Even when accounting for the possibility of “masking,” the teen still does not meet criteria for autism based on history and presentation. The habit movements are not typical of usual stereotypies or of tics (which tend to increase with excitement and tend to have a more effortless quality), and are felt to possibly be functional in origin. Upon gently sharing these conclusions with the teen, she bursts into tears, stating her friends may now accuse her of lying, as she has already been claiming to have autism online and in person at school.
Countering social media diagnoses
This type of scenario is becoming increasingly common, with teens turning online primarily to social media accounts to gain knowledge around various neurologic and mental health conditions. Greater normalization of neurodiversity and greater access to high-quality information about neurodevelopmental differences is certainly progress, though unfortunately some online depictions of these conditions are simply not accurate. Many adolescents are keenly searching for both their personal identity and also a community through which they might feel wholly accepted, after experiencing some level of isolation during the pandemic followed by increased social discomfort in attempting to reintegrate into school life and society. Connecting the teen with a good-fit therapist and working to replace excessive screen time with exercise, outdoor activities, and in-person engagement with friends and family are also crucial interventions, though they can be incredibly difficult for families to achieve given various patient-specific and societal barriers. The overlap in symptomatology among anxiety, attention-deficit/hyperactivity disorder, and autism spectrum disorders is expansive, making it understandable that young people might misjudge their personal experience of life for a neurodevelopmental disorder for which they do not truly meet criteria. Increasing access to therapists well versed in trauma-informed care is a frequently referenced need, highlighted in this case.
Another case
In contrast to the case scenario above is that of a 19-year-old female presenting for a formal autism evaluation at the urging of her father, who has had concerns around her severe “shyness” throughout her life. He is concerned that she was not able to obtain a high school diploma despite appearing to have adequate cognitive skills, is currently quite isolated, and does not appear equipped to hold a job at this time. He describes her as having been a very quiet and self-directed young child who greatly benefited from the communication and social scaffolding provided by her slightly older and neurotypical sister. She has generally not had true friends, though she had no behavioral or academic difficulties in school other than seeming aloof and unusually quiet. Atypical social approaches have become more apparent over time, as relationship navigation has become more complex with age. She is noted to have frequent stereotyped hand-to-face movements throughout the evaluation, as well as a flat affect and unusual voice quality. She speaks slowly and softly, and while she does make eye contact, it is less well modulated than would be expected. She is very focused on her cat and online interests during conversation, and tends to give stilted answers to open-ended questions. During the interview portion of the ADOS, she demonstrates little insight into friendships and reports feeling very content on her own, though is open to the idea of relationships in the future and would like to learn how to achieve connections with others. Her father reports she tends to be generally quite blunt and has difficulty understanding humor and others’ perspectives. An autism diagnosis is made with the recommendation of application to Developmental Disability Services, given impaired adaptive skills, as a means of utilizing community-based supports to facilitate eventually obtaining a high school equivalency credential, a job, healthier living habits, and comfortable social outlets.
Discussion
It is crucial for providers to be aware of nuanced presentations of autism spectrum disorders that may have been missed in early childhood when social demands are less complicated, particularly in persons identified as female at birth, nonbinary individuals, and those belonging to minority groups. It is also important to address the widely acknowledged trend of adolescents turning to social media influencers for information around neurodevelopmental conditions, at a time in their lives when social anxiety and self-awareness are generally heightened. For an adolescent, a young social media influencer may feel like a more salient and reliable source of information than an adult with various letters after their name. A respectful relationship between a teen and a thoughtful primary care provider can help gain trust to foster open conversations around their concerns, which can further help determine if a referral to a psychologist or developmental pediatrician for a formal autism assessment is truly warranted, highlighting the need for increased diagnostic capacity for such. While it is certainly important for providers to keep an open mind and to have continued awareness around the concept of late autism diagnoses, it is wise to also be aware of this recent trend among adolescents as providers seek to guide youth toward appropriate therapies and services.
Dr. Roth is a developmental and behavioral pediatrician in Eugene, Ore. She has no conflicts of interest.
A 16-year-old female presents for a self-identified concern around the possibility that she is experiencing an autism spectrum disorder. She relays to the developmental pediatrician that she has been learning a lot about autism on TikTok and through other social media sites, and has become strongly convinced that she meets medical criteria for this disorder.
A careful developmental history via a detailed interview with the mother reveals normal acquisition of early developmental milestones in addition to long-standing well-modulated eye contact felt to be paired fluidly with directed affect and gestures. The teen is described as having been an engaging toddler and preschooler, without restricted interests or repetitive behaviors, and having had no major challenges in grade school with behaviors, friendships, or academics.
During the pandemic, however, the teen became quite isolated. She developed anxiety with depression, and then started having some new repetitive arm movements within the last 12-18 months. In clinic, the teen makes robustly effortful arm-waving movements, which are noted to wane when she becomes more animated and excited during conversation, and to increase when she is less distracted by conversation and more focused on the movements.
She directs affect nicely toward her mother, while avoiding looking in the direction of the examiner until later in the evaluation when she becomes more relaxed. Prosody of speech and intonation are typical, and she describes having a close group of friends with whom she spends quite a bit of time.
The Autism Diagnostic Observation Schedule (ADOS-2 module 3) is used to gather structured observations, and these social presses yield flowing social engagement with the examiner, good understanding of humor, and overall excellent verbal and nonverbal communication skills. The teen describes hypervigilance around the emotions of others, a natural ease in understanding the perspectives of others, and a quick ability to read the energy of a room. She does have some interest in some more obscure online game forums, but her friends do as well, and she otherwise does not have a history of intrusive fixations. A social history reveals past significant verbal abuse in the home by means of her father during her first 11 years of life, which is described as quite traumatic.
After careful and thoughtful consideration (recognizing the known statistics around girls assigned female at birth, as well as nonbinary individuals and minoritized groups being underdiagnosed with autism), the history and observations are not felt to be consistent with autism, but with anxiety within the context of a trauma and stressor-related disorder. Even when accounting for the possibility of “masking,” the teen still does not meet criteria for autism based on history and presentation. The habit movements are not typical of usual stereotypies or of tics (which tend to increase with excitement and tend to have a more effortless quality), and are felt to possibly be functional in origin. Upon gently sharing these conclusions with the teen, she bursts into tears, stating her friends may now accuse her of lying, as she has already been claiming to have autism online and in person at school.
Countering social media diagnoses
This type of scenario is becoming increasingly common, with teens turning online primarily to social media accounts to gain knowledge around various neurologic and mental health conditions. Greater normalization of neurodiversity and greater access to high-quality information about neurodevelopmental differences is certainly progress, though unfortunately some online depictions of these conditions are simply not accurate. Many adolescents are keenly searching for both their personal identity and also a community through which they might feel wholly accepted, after experiencing some level of isolation during the pandemic followed by increased social discomfort in attempting to reintegrate into school life and society. Connecting the teen with a good-fit therapist and working to replace excessive screen time with exercise, outdoor activities, and in-person engagement with friends and family are also crucial interventions, though they can be incredibly difficult for families to achieve given various patient-specific and societal barriers. The overlap in symptomatology among anxiety, attention-deficit/hyperactivity disorder, and autism spectrum disorders is expansive, making it understandable that young people might misjudge their personal experience of life for a neurodevelopmental disorder for which they do not truly meet criteria. Increasing access to therapists well versed in trauma-informed care is a frequently referenced need, highlighted in this case.
Another case
In contrast to the case scenario above is that of a 19-year-old female presenting for a formal autism evaluation at the urging of her father, who has had concerns around her severe “shyness” throughout her life. He is concerned that she was not able to obtain a high school diploma despite appearing to have adequate cognitive skills, is currently quite isolated, and does not appear equipped to hold a job at this time. He describes her as having been a very quiet and self-directed young child who greatly benefited from the communication and social scaffolding provided by her slightly older and neurotypical sister. She has generally not had true friends, though she had no behavioral or academic difficulties in school other than seeming aloof and unusually quiet. Atypical social approaches have become more apparent over time, as relationship navigation has become more complex with age. She is noted to have frequent stereotyped hand-to-face movements throughout the evaluation, as well as a flat affect and unusual voice quality. She speaks slowly and softly, and while she does make eye contact, it is less well modulated than would be expected. She is very focused on her cat and online interests during conversation, and tends to give stilted answers to open-ended questions. During the interview portion of the ADOS, she demonstrates little insight into friendships and reports feeling very content on her own, though is open to the idea of relationships in the future and would like to learn how to achieve connections with others. Her father reports she tends to be generally quite blunt and has difficulty understanding humor and others’ perspectives. An autism diagnosis is made with the recommendation of application to Developmental Disability Services, given impaired adaptive skills, as a means of utilizing community-based supports to facilitate eventually obtaining a high school equivalency credential, a job, healthier living habits, and comfortable social outlets.
Discussion
It is crucial for providers to be aware of nuanced presentations of autism spectrum disorders that may have been missed in early childhood when social demands are less complicated, particularly in persons identified as female at birth, nonbinary individuals, and those belonging to minority groups. It is also important to address the widely acknowledged trend of adolescents turning to social media influencers for information around neurodevelopmental conditions, at a time in their lives when social anxiety and self-awareness are generally heightened. For an adolescent, a young social media influencer may feel like a more salient and reliable source of information than an adult with various letters after their name. A respectful relationship between a teen and a thoughtful primary care provider can help gain trust to foster open conversations around their concerns, which can further help determine if a referral to a psychologist or developmental pediatrician for a formal autism assessment is truly warranted, highlighting the need for increased diagnostic capacity for such. While it is certainly important for providers to keep an open mind and to have continued awareness around the concept of late autism diagnoses, it is wise to also be aware of this recent trend among adolescents as providers seek to guide youth toward appropriate therapies and services.
Dr. Roth is a developmental and behavioral pediatrician in Eugene, Ore. She has no conflicts of interest.
Tourette syndrome: Diagnosis is key for best care
Tourette syndrome, attention-deficit/hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD), and autism spectrum disorder (ASD) share significant overlap in symptomatology, and it can be challenging at times to distinguish between these conditions. Being able to do so, however, can help guide more targeted interventions and accommodations to optimize a patient’s level of functioning.
Case example
A healthy, bright 6-year-old boy is referred by his family doctor to an academic medical center for a full team evaluation because of suspicion of ASD, after having already been diagnosed with ADHD at the age of 5. His difficulties with inattention, impulsivity, and hyperactivity, as well as his behavioral rigidities and sensory avoidant and sensory seeking behaviors have caused functional impairments for him in his kindergarten classroom. He has been penalized with removal of recess on more than one occasion. A low dose of a stimulant had been tried but resulted in a perceived increase in disruptive behaviors.
The boy, while hyperkinetic and often paying poor attention, is quite capable of high-quality and well-modulated eye contact paired with typical social referencing and reciprocity when actively engaging with the examiner and his parents. He does have a reported history of serial fixated interests and some repetitive behaviors but is also noted to be flexible in his interpersonal style, maintains other varied and typical interests, easily directs affect, utilizes a wide array of fluid gestures paired naturally with verbal communication, and shares enjoyment with smoothly coordinated gaze. He has mild articulation errors but uses pronouns appropriately and has no scripted speech or echolalia, though does engage in some whispered palilalia intermittently.
He is generally quite cooperative and redirectable when focused and has a completely normal physical and neurologic examination. During the visit, the doctor notices the boy making an intermittent honking sound, which parents report as an attention-seeking strategy during times of stress. Further physician-guided information gathering around other repetitive noises and movements elicits a history of engagement in repetitive hand-to-groin movements, some exaggerated blinking, and a number of other waxing and waning subtle motor and phonic tics with onset in preschool. These noises and movements have generally been identified as “fidgeting” and “misbehaving” by well-meaning caregivers in the home and school environments.
Both Tourette syndrome and ASD are more common in males, with stereotyped patterns of movements and behaviors; anxious, obsessive, and compulsive behaviors resulting in behavioral rigidities; sensory sensitivities; and increased rates of hyperkinesis with decreased impulse control which result in increased sensory-seeking behaviors. Diagnostic criteria for Tourette syndrome are met when a child has had multiple motor tics and at least one phonic tic present for at least 1 year, with tic-free intervals lasting no longer than 3 months, and with onset before the age of 18. Typically, tics emerge in late preschool and early grade school, and some children even develop repetitive movements as early as toddlerhood. Tics tend to worsen around the peripubertal era, then often generally improve in the teen years. Tic types, frequency, and severity general fluctuate over time.
Forty percent of children with Tourette syndrome also meet criteria for OCD, with many more having OCD traits, and about 65% of children with Tourette syndrome also meet criteria for ADHD, with many more having ADHD traits. OCD can lead to more rigid and directive social interactions in children as well as obsessive interests, just as ADHD can lead to less socially attuned and less cooperative behaviors, even in children who do not meet criteria for ASD.
For example, a child with OCD in the absence of ASD may still “police” other kids in class and be overly focused on the rules of a game, which may become a social liability. Likewise, a child with ADHD in the absence of ASD may be so distractible that focusing on what other kids are saying and their paired facial expressions is compromised, leading to poor-quality social reciprocity during interactions with peers. Given the remarkable overlap in shared symptoms, it is essential for pediatric providers to consider Tourette syndrome in the differential for any child with repetitive movements and behaviors in addition to ASD and a wide array of other neurodevelopment differences, including global developmental delays and intellectual disabilities. This is of particular importance as the diagnosis of Tourette syndrome can be used to gain access to developmental disability services if the condition has resulted in true adaptive impairments.
It is determined that the boy does in fact meet criteria for ADHD, but also for OCD and Tourette syndrome. Both his Autism Diagnostic Observation Schedule and DSM-5–influenced autism interview are found to be in the nonclinical ranges, given his quality of communication, social engagement, imaginative play, and varied interests. A diagnosis of ASD is not felt to be an appropriate conceptualization of his neurodevelopmental differences. He is started on a low dose of guanfacine, which induces a decline in tics, impulsivity, and hyperkinesis. He is given a 504 plan in school that includes scheduled “tic breaks,” sensory fidgets for use in the classroom, extra movement opportunities as needed, and utilization of a gentle cueing system between him and his teacher for low-key redirection of disruptive behaviors. He is no longer penalized for inattention or tics, and his 504 plan protects him from the use of recess removal as a behavioral modification strategy.
His parents enroll him in the community swim program for extra exercise, focus on decreasing screen time, and give him an earlier bedtime to help decrease his tics and rigidities, while improving his ability to self-regulate. Eventually, a low dose of a newer-generation stimulant is added to his guanfacine, with excellent results and only a mild increase in tolerable tics.
The child in the vignette did well with a 504 plan based on his medical diagnoses, though if related learning difficulties had persisted, eligibility under Other Health Impaired could be used to provide eligibility for an Individualized Education Plan. Alpha-agonists can be helpful for symptom control in those with Tourette syndrome by simultaneously treating tics, hyperkinesis, and impulsivity, while decreasing the risk of tic exacerbation with use of stimulants. Overall, understanding the neurodiversity related to Tourette syndrome can help providers advocate for home and community-based supports to optimize general functioning and quality of life.
Dr. Roth is a developmental and behavioral pediatrician in Eugene, Ore. She has no conflicts of interest.
References
Darrow S et al. J Am Acad Child Adolescent Psych. 2017;56(7):610-7.
AAP Section on Developmental and Behavioral Pediatrics. Developmental and Behavioral Pediatrics. Voigt RG et al, eds. 2018: American Academy of Pediatrics.
Tourette syndrome, attention-deficit/hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD), and autism spectrum disorder (ASD) share significant overlap in symptomatology, and it can be challenging at times to distinguish between these conditions. Being able to do so, however, can help guide more targeted interventions and accommodations to optimize a patient’s level of functioning.
Case example
A healthy, bright 6-year-old boy is referred by his family doctor to an academic medical center for a full team evaluation because of suspicion of ASD, after having already been diagnosed with ADHD at the age of 5. His difficulties with inattention, impulsivity, and hyperactivity, as well as his behavioral rigidities and sensory avoidant and sensory seeking behaviors have caused functional impairments for him in his kindergarten classroom. He has been penalized with removal of recess on more than one occasion. A low dose of a stimulant had been tried but resulted in a perceived increase in disruptive behaviors.
The boy, while hyperkinetic and often paying poor attention, is quite capable of high-quality and well-modulated eye contact paired with typical social referencing and reciprocity when actively engaging with the examiner and his parents. He does have a reported history of serial fixated interests and some repetitive behaviors but is also noted to be flexible in his interpersonal style, maintains other varied and typical interests, easily directs affect, utilizes a wide array of fluid gestures paired naturally with verbal communication, and shares enjoyment with smoothly coordinated gaze. He has mild articulation errors but uses pronouns appropriately and has no scripted speech or echolalia, though does engage in some whispered palilalia intermittently.
He is generally quite cooperative and redirectable when focused and has a completely normal physical and neurologic examination. During the visit, the doctor notices the boy making an intermittent honking sound, which parents report as an attention-seeking strategy during times of stress. Further physician-guided information gathering around other repetitive noises and movements elicits a history of engagement in repetitive hand-to-groin movements, some exaggerated blinking, and a number of other waxing and waning subtle motor and phonic tics with onset in preschool. These noises and movements have generally been identified as “fidgeting” and “misbehaving” by well-meaning caregivers in the home and school environments.
Both Tourette syndrome and ASD are more common in males, with stereotyped patterns of movements and behaviors; anxious, obsessive, and compulsive behaviors resulting in behavioral rigidities; sensory sensitivities; and increased rates of hyperkinesis with decreased impulse control which result in increased sensory-seeking behaviors. Diagnostic criteria for Tourette syndrome are met when a child has had multiple motor tics and at least one phonic tic present for at least 1 year, with tic-free intervals lasting no longer than 3 months, and with onset before the age of 18. Typically, tics emerge in late preschool and early grade school, and some children even develop repetitive movements as early as toddlerhood. Tics tend to worsen around the peripubertal era, then often generally improve in the teen years. Tic types, frequency, and severity general fluctuate over time.
Forty percent of children with Tourette syndrome also meet criteria for OCD, with many more having OCD traits, and about 65% of children with Tourette syndrome also meet criteria for ADHD, with many more having ADHD traits. OCD can lead to more rigid and directive social interactions in children as well as obsessive interests, just as ADHD can lead to less socially attuned and less cooperative behaviors, even in children who do not meet criteria for ASD.
For example, a child with OCD in the absence of ASD may still “police” other kids in class and be overly focused on the rules of a game, which may become a social liability. Likewise, a child with ADHD in the absence of ASD may be so distractible that focusing on what other kids are saying and their paired facial expressions is compromised, leading to poor-quality social reciprocity during interactions with peers. Given the remarkable overlap in shared symptoms, it is essential for pediatric providers to consider Tourette syndrome in the differential for any child with repetitive movements and behaviors in addition to ASD and a wide array of other neurodevelopment differences, including global developmental delays and intellectual disabilities. This is of particular importance as the diagnosis of Tourette syndrome can be used to gain access to developmental disability services if the condition has resulted in true adaptive impairments.
It is determined that the boy does in fact meet criteria for ADHD, but also for OCD and Tourette syndrome. Both his Autism Diagnostic Observation Schedule and DSM-5–influenced autism interview are found to be in the nonclinical ranges, given his quality of communication, social engagement, imaginative play, and varied interests. A diagnosis of ASD is not felt to be an appropriate conceptualization of his neurodevelopmental differences. He is started on a low dose of guanfacine, which induces a decline in tics, impulsivity, and hyperkinesis. He is given a 504 plan in school that includes scheduled “tic breaks,” sensory fidgets for use in the classroom, extra movement opportunities as needed, and utilization of a gentle cueing system between him and his teacher for low-key redirection of disruptive behaviors. He is no longer penalized for inattention or tics, and his 504 plan protects him from the use of recess removal as a behavioral modification strategy.
His parents enroll him in the community swim program for extra exercise, focus on decreasing screen time, and give him an earlier bedtime to help decrease his tics and rigidities, while improving his ability to self-regulate. Eventually, a low dose of a newer-generation stimulant is added to his guanfacine, with excellent results and only a mild increase in tolerable tics.
The child in the vignette did well with a 504 plan based on his medical diagnoses, though if related learning difficulties had persisted, eligibility under Other Health Impaired could be used to provide eligibility for an Individualized Education Plan. Alpha-agonists can be helpful for symptom control in those with Tourette syndrome by simultaneously treating tics, hyperkinesis, and impulsivity, while decreasing the risk of tic exacerbation with use of stimulants. Overall, understanding the neurodiversity related to Tourette syndrome can help providers advocate for home and community-based supports to optimize general functioning and quality of life.
Dr. Roth is a developmental and behavioral pediatrician in Eugene, Ore. She has no conflicts of interest.
References
Darrow S et al. J Am Acad Child Adolescent Psych. 2017;56(7):610-7.
AAP Section on Developmental and Behavioral Pediatrics. Developmental and Behavioral Pediatrics. Voigt RG et al, eds. 2018: American Academy of Pediatrics.
Tourette syndrome, attention-deficit/hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD), and autism spectrum disorder (ASD) share significant overlap in symptomatology, and it can be challenging at times to distinguish between these conditions. Being able to do so, however, can help guide more targeted interventions and accommodations to optimize a patient’s level of functioning.
Case example
A healthy, bright 6-year-old boy is referred by his family doctor to an academic medical center for a full team evaluation because of suspicion of ASD, after having already been diagnosed with ADHD at the age of 5. His difficulties with inattention, impulsivity, and hyperactivity, as well as his behavioral rigidities and sensory avoidant and sensory seeking behaviors have caused functional impairments for him in his kindergarten classroom. He has been penalized with removal of recess on more than one occasion. A low dose of a stimulant had been tried but resulted in a perceived increase in disruptive behaviors.
The boy, while hyperkinetic and often paying poor attention, is quite capable of high-quality and well-modulated eye contact paired with typical social referencing and reciprocity when actively engaging with the examiner and his parents. He does have a reported history of serial fixated interests and some repetitive behaviors but is also noted to be flexible in his interpersonal style, maintains other varied and typical interests, easily directs affect, utilizes a wide array of fluid gestures paired naturally with verbal communication, and shares enjoyment with smoothly coordinated gaze. He has mild articulation errors but uses pronouns appropriately and has no scripted speech or echolalia, though does engage in some whispered palilalia intermittently.
He is generally quite cooperative and redirectable when focused and has a completely normal physical and neurologic examination. During the visit, the doctor notices the boy making an intermittent honking sound, which parents report as an attention-seeking strategy during times of stress. Further physician-guided information gathering around other repetitive noises and movements elicits a history of engagement in repetitive hand-to-groin movements, some exaggerated blinking, and a number of other waxing and waning subtle motor and phonic tics with onset in preschool. These noises and movements have generally been identified as “fidgeting” and “misbehaving” by well-meaning caregivers in the home and school environments.
Both Tourette syndrome and ASD are more common in males, with stereotyped patterns of movements and behaviors; anxious, obsessive, and compulsive behaviors resulting in behavioral rigidities; sensory sensitivities; and increased rates of hyperkinesis with decreased impulse control which result in increased sensory-seeking behaviors. Diagnostic criteria for Tourette syndrome are met when a child has had multiple motor tics and at least one phonic tic present for at least 1 year, with tic-free intervals lasting no longer than 3 months, and with onset before the age of 18. Typically, tics emerge in late preschool and early grade school, and some children even develop repetitive movements as early as toddlerhood. Tics tend to worsen around the peripubertal era, then often generally improve in the teen years. Tic types, frequency, and severity general fluctuate over time.
Forty percent of children with Tourette syndrome also meet criteria for OCD, with many more having OCD traits, and about 65% of children with Tourette syndrome also meet criteria for ADHD, with many more having ADHD traits. OCD can lead to more rigid and directive social interactions in children as well as obsessive interests, just as ADHD can lead to less socially attuned and less cooperative behaviors, even in children who do not meet criteria for ASD.
For example, a child with OCD in the absence of ASD may still “police” other kids in class and be overly focused on the rules of a game, which may become a social liability. Likewise, a child with ADHD in the absence of ASD may be so distractible that focusing on what other kids are saying and their paired facial expressions is compromised, leading to poor-quality social reciprocity during interactions with peers. Given the remarkable overlap in shared symptoms, it is essential for pediatric providers to consider Tourette syndrome in the differential for any child with repetitive movements and behaviors in addition to ASD and a wide array of other neurodevelopment differences, including global developmental delays and intellectual disabilities. This is of particular importance as the diagnosis of Tourette syndrome can be used to gain access to developmental disability services if the condition has resulted in true adaptive impairments.
It is determined that the boy does in fact meet criteria for ADHD, but also for OCD and Tourette syndrome. Both his Autism Diagnostic Observation Schedule and DSM-5–influenced autism interview are found to be in the nonclinical ranges, given his quality of communication, social engagement, imaginative play, and varied interests. A diagnosis of ASD is not felt to be an appropriate conceptualization of his neurodevelopmental differences. He is started on a low dose of guanfacine, which induces a decline in tics, impulsivity, and hyperkinesis. He is given a 504 plan in school that includes scheduled “tic breaks,” sensory fidgets for use in the classroom, extra movement opportunities as needed, and utilization of a gentle cueing system between him and his teacher for low-key redirection of disruptive behaviors. He is no longer penalized for inattention or tics, and his 504 plan protects him from the use of recess removal as a behavioral modification strategy.
His parents enroll him in the community swim program for extra exercise, focus on decreasing screen time, and give him an earlier bedtime to help decrease his tics and rigidities, while improving his ability to self-regulate. Eventually, a low dose of a newer-generation stimulant is added to his guanfacine, with excellent results and only a mild increase in tolerable tics.
The child in the vignette did well with a 504 plan based on his medical diagnoses, though if related learning difficulties had persisted, eligibility under Other Health Impaired could be used to provide eligibility for an Individualized Education Plan. Alpha-agonists can be helpful for symptom control in those with Tourette syndrome by simultaneously treating tics, hyperkinesis, and impulsivity, while decreasing the risk of tic exacerbation with use of stimulants. Overall, understanding the neurodiversity related to Tourette syndrome can help providers advocate for home and community-based supports to optimize general functioning and quality of life.
Dr. Roth is a developmental and behavioral pediatrician in Eugene, Ore. She has no conflicts of interest.
References
Darrow S et al. J Am Acad Child Adolescent Psych. 2017;56(7):610-7.
AAP Section on Developmental and Behavioral Pediatrics. Developmental and Behavioral Pediatrics. Voigt RG et al, eds. 2018: American Academy of Pediatrics.