Preventing Fetal Alcohol Syndrome

When I was doing my pediatrics research in medical school at Meharry Medical College in 1969, I was struck by the finding that many poor African Americans were being diagnosed with mild mental retardation that was attributable to what some people in Nashville, Tenn., called "sociocultural mental retardation."

This disorder was purported to be caused by the reality that poor African American families did not have books in their homes. It also was of interest to me that the more severe forms of mental retardation such as phenylketonuria, Down syndrome, and so on, cut across all socioeconomic, racial, and cultural lines.

At the time, another commonly used label was "minimal brain dysfunction." This diagnosis captured speech and language disorders, attention-deficit/hyperactivity disorder (ADHD), and specific learning disorders.

I found this curious, but I never bought the theory that the absence of books in the home was the cause.

Ten years later, when I was working for the Chicago Board of Education, where I observed 274 Chicago public school children being referred for complete diagnoses, I again saw this phenomenon of mild mental retardation and minimal brain dysfunction, and wondered what could be the cause. Back then, I figured it was tied to the high rates of premature births in poor black communities, as I understood that premature infants were more likely to have intracranial bleeding – which might have caused mild cognitive impairments.

Fast-forward about 6 years. I was on a Texas Department of Corrections (DOC) accreditation visit for the National Commission on Correctional Health Care, when I learned that about 20% of its inmates have issues with mental retardation and, in fact, Texas’s DOC has special prisons just for that type of inmate. A large percentage of those inmates fit the demographic I had treated earlier. So, again, I was confronted with this problem of mental retardation in poor African American populations.

More recently, I did a Continuous Quality Improvement review of several school-based clinics in the Chicago public schools, and learned that children with various levels of mental retardation (mostly mild), speech and language, ADHD, and specific learning disorders are identified in the second grade.

From the time they are identified, these children are given individual therapy for behavioral problems. When the therapy fails, often when they are in sixth through eighth grades, they are unfortunately and frequently relabeled with conduct disorder and then shuttled to the Cook County Juvenile Detention Center. I have learned that two-thirds to three-quarters of the youth incarcerated by the county have these diagnoses.

Lastly, I recently have begun to see adult patients with mental illness in large numbers because the state of Illinois seems to be having difficulty paying its Human Services bills. Recently, I picked up 400 patients. Strikingly, slightly more than 10% of these patients have some form of mental retardation. But they are being folded into the general adult psychiatric population.

So again, this vexing question remains: What is causing the high rates of mental retardation among lower-income African Americans?

The answer came to me while conducting a psychiatric evaluation of a 19-year-old black male. This young man had been diagnosed as chronic undifferentiated schizophrenic; he was actually mildly mentally retarded and had a difficult time differentiating "hearing voices" from his conscience, and when he answered "yes" to the question of whether he heard voices, he was misdiagnosed. The patient had fetal alcohol syndrome (FAS) so severely that he still had the characteristic face of FAS.

I got further confirmation while at the Manitoba’s Mental Health Summit in Winnipeg, where I presented the keynote on "Prospects for the Prevention of Mental Illness: New Developments and New Challenges." While preparing for this presentation, I was struck with Canada’s epidemiology of the prevalence of FAS among its First Nations populations.

You may recall that starting in the 1870s, Canada had a policy of forcibly removing First Nations children from their families and placing them in residential schools (Child Youth Serv. Rev. 2011;33:187-94). In these schools, First Nations children were told that they should abandon their language, food, religion, and dress to be good Canadians.

The result? The First Nations culture that had protected both the children and adults was stripped, and their response to this cultural trauma was to drink (leading to the high rates of FAS and fetal alcohol spectrum disorder [FASD], suicides, violent acts, and generally self-destructive behaviors).

At any rate, it turns out that based on available Canadian data, youths with FASD are 19 times more likely to be incarcerated than are youths without FASD in a given year (Can. J. Pub. Health 2011;102:336-40).

Most African Americans are descendants of people who also were stripped of the cultural factors that protected them. Unfortunately, liquor stores are one of the mainstays within low-income black communities. I suspect that poor African American women either drink in their first month before they know they are pregnant and/or may be ignorant about the dangers of drinking while pregnant that they drink after they know. The impact of prenatal exposure to alcohol to the hippocampus of the developing fetus is devastating (Hippocampus 2000;10:94-110).

In order to change the trajectory of the lives of our poor patients – and address the Disproportionate Minority Contact mandate of the Juvenile Justice Delinquency Act – we’ve got to put a prevention system in place that, among other things, educates them about the dangers of maternal alcohol ingestion. Fetal alcohol syndrome is a problem that is 100% preventable.

Dr. Bell is president/chief executive officer of Community Mental Health Council Inc. in Chicago. He also serves as director of the Institute for Juvenile Research at the University of Illinois at Chicago, and is director of public and community psychiatry at the university.

When I was doing my pediatrics research in medical school at Meharry Medical College in 1969, I was struck by the finding that many poor African Americans were being diagnosed with mild mental retardation that was attributable to what some people in Nashville, Tenn., called "sociocultural mental retardation."

This disorder was purported to be caused by the reality that poor African American families did not have books in their homes. It also was of interest to me that the more severe forms of mental retardation such as phenylketonuria, Down syndrome, and so on, cut across all socioeconomic, racial, and cultural lines.

At the time, another commonly used label was "minimal brain dysfunction." This diagnosis captured speech and language disorders, attention-deficit/hyperactivity disorder (ADHD), and specific learning disorders.

I found this curious, but I never bought the theory that the absence of books in the home was the cause.

Ten years later, when I was working for the Chicago Board of Education, where I observed 274 Chicago public school children being referred for complete diagnoses, I again saw this phenomenon of mild mental retardation and minimal brain dysfunction, and wondered what could be the cause. Back then, I figured it was tied to the high rates of premature births in poor black communities, as I understood that premature infants were more likely to have intracranial bleeding – which might have caused mild cognitive impairments.

Fast-forward about 6 years. I was on a Texas Department of Corrections (DOC) accreditation visit for the National Commission on Correctional Health Care, when I learned that about 20% of its inmates have issues with mental retardation and, in fact, Texas’s DOC has special prisons just for that type of inmate. A large percentage of those inmates fit the demographic I had treated earlier. So, again, I was confronted with this problem of mental retardation in poor African American populations.

More recently, I did a Continuous Quality Improvement review of several school-based clinics in the Chicago public schools, and learned that children with various levels of mental retardation (mostly mild), speech and language, ADHD, and specific learning disorders are identified in the second grade.

From the time they are identified, these children are given individual therapy for behavioral problems. When the therapy fails, often when they are in sixth through eighth grades, they are unfortunately and frequently relabeled with conduct disorder and then shuttled to the Cook County Juvenile Detention Center. I have learned that two-thirds to three-quarters of the youth incarcerated by the county have these diagnoses.

Lastly, I recently have begun to see adult patients with mental illness in large numbers because the state of Illinois seems to be having difficulty paying its Human Services bills. Recently, I picked up 400 patients. Strikingly, slightly more than 10% of these patients have some form of mental retardation. But they are being folded into the general adult psychiatric population.

So again, this vexing question remains: What is causing the high rates of mental retardation among lower-income African Americans?

The answer came to me while conducting a psychiatric evaluation of a 19-year-old black male. This young man had been diagnosed as chronic undifferentiated schizophrenic; he was actually mildly mentally retarded and had a difficult time differentiating "hearing voices" from his conscience, and when he answered "yes" to the question of whether he heard voices, he was misdiagnosed. The patient had fetal alcohol syndrome (FAS) so severely that he still had the characteristic face of FAS.

I got further confirmation while at the Manitoba’s Mental Health Summit in Winnipeg, where I presented the keynote on "Prospects for the Prevention of Mental Illness: New Developments and New Challenges." While preparing for this presentation, I was struck with Canada’s epidemiology of the prevalence of FAS among its First Nations populations.

You may recall that starting in the 1870s, Canada had a policy of forcibly removing First Nations children from their families and placing them in residential schools (Child Youth Serv. Rev. 2011;33:187-94). In these schools, First Nations children were told that they should abandon their language, food, religion, and dress to be good Canadians.

The result? The First Nations culture that had protected both the children and adults was stripped, and their response to this cultural trauma was to drink (leading to the high rates of FAS and fetal alcohol spectrum disorder [FASD], suicides, violent acts, and generally self-destructive behaviors).

At any rate, it turns out that based on available Canadian data, youths with FASD are 19 times more likely to be incarcerated than are youths without FASD in a given year (Can. J. Pub. Health 2011;102:336-40).

Most African Americans are descendants of people who also were stripped of the cultural factors that protected them. Unfortunately, liquor stores are one of the mainstays within low-income black communities. I suspect that poor African American women either drink in their first month before they know they are pregnant and/or may be ignorant about the dangers of drinking while pregnant that they drink after they know. The impact of prenatal exposure to alcohol to the hippocampus of the developing fetus is devastating (Hippocampus 2000;10:94-110).

In order to change the trajectory of the lives of our poor patients – and address the Disproportionate Minority Contact mandate of the Juvenile Justice Delinquency Act – we’ve got to put a prevention system in place that, among other things, educates them about the dangers of maternal alcohol ingestion. Fetal alcohol syndrome is a problem that is 100% preventable.

Dr. Bell is president/chief executive officer of Community Mental Health Council Inc. in Chicago. He also serves as director of the Institute for Juvenile Research at the University of Illinois at Chicago, and is director of public and community psychiatry at the university.

When I was doing my pediatrics research in medical school at Meharry Medical College in 1969, I was struck by the finding that many poor African Americans were being diagnosed with mild mental retardation that was attributable to what some people in Nashville, Tenn., called "sociocultural mental retardation."

This disorder was purported to be caused by the reality that poor African American families did not have books in their homes. It also was of interest to me that the more severe forms of mental retardation such as phenylketonuria, Down syndrome, and so on, cut across all socioeconomic, racial, and cultural lines.

At the time, another commonly used label was "minimal brain dysfunction." This diagnosis captured speech and language disorders, attention-deficit/hyperactivity disorder (ADHD), and specific learning disorders.

I found this curious, but I never bought the theory that the absence of books in the home was the cause.

Ten years later, when I was working for the Chicago Board of Education, where I observed 274 Chicago public school children being referred for complete diagnoses, I again saw this phenomenon of mild mental retardation and minimal brain dysfunction, and wondered what could be the cause. Back then, I figured it was tied to the high rates of premature births in poor black communities, as I understood that premature infants were more likely to have intracranial bleeding – which might have caused mild cognitive impairments.

Fast-forward about 6 years. I was on a Texas Department of Corrections (DOC) accreditation visit for the National Commission on Correctional Health Care, when I learned that about 20% of its inmates have issues with mental retardation and, in fact, Texas’s DOC has special prisons just for that type of inmate. A large percentage of those inmates fit the demographic I had treated earlier. So, again, I was confronted with this problem of mental retardation in poor African American populations.

More recently, I did a Continuous Quality Improvement review of several school-based clinics in the Chicago public schools, and learned that children with various levels of mental retardation (mostly mild), speech and language, ADHD, and specific learning disorders are identified in the second grade.

From the time they are identified, these children are given individual therapy for behavioral problems. When the therapy fails, often when they are in sixth through eighth grades, they are unfortunately and frequently relabeled with conduct disorder and then shuttled to the Cook County Juvenile Detention Center. I have learned that two-thirds to three-quarters of the youth incarcerated by the county have these diagnoses.

Lastly, I recently have begun to see adult patients with mental illness in large numbers because the state of Illinois seems to be having difficulty paying its Human Services bills. Recently, I picked up 400 patients. Strikingly, slightly more than 10% of these patients have some form of mental retardation. But they are being folded into the general adult psychiatric population.

So again, this vexing question remains: What is causing the high rates of mental retardation among lower-income African Americans?

The answer came to me while conducting a psychiatric evaluation of a 19-year-old black male. This young man had been diagnosed as chronic undifferentiated schizophrenic; he was actually mildly mentally retarded and had a difficult time differentiating "hearing voices" from his conscience, and when he answered "yes" to the question of whether he heard voices, he was misdiagnosed. The patient had fetal alcohol syndrome (FAS) so severely that he still had the characteristic face of FAS.

I got further confirmation while at the Manitoba’s Mental Health Summit in Winnipeg, where I presented the keynote on "Prospects for the Prevention of Mental Illness: New Developments and New Challenges." While preparing for this presentation, I was struck with Canada’s epidemiology of the prevalence of FAS among its First Nations populations.

You may recall that starting in the 1870s, Canada had a policy of forcibly removing First Nations children from their families and placing them in residential schools (Child Youth Serv. Rev. 2011;33:187-94). In these schools, First Nations children were told that they should abandon their language, food, religion, and dress to be good Canadians.

The result? The First Nations culture that had protected both the children and adults was stripped, and their response to this cultural trauma was to drink (leading to the high rates of FAS and fetal alcohol spectrum disorder [FASD], suicides, violent acts, and generally self-destructive behaviors).

At any rate, it turns out that based on available Canadian data, youths with FASD are 19 times more likely to be incarcerated than are youths without FASD in a given year (Can. J. Pub. Health 2011;102:336-40).

Most African Americans are descendants of people who also were stripped of the cultural factors that protected them. Unfortunately, liquor stores are one of the mainstays within low-income black communities. I suspect that poor African American women either drink in their first month before they know they are pregnant and/or may be ignorant about the dangers of drinking while pregnant that they drink after they know. The impact of prenatal exposure to alcohol to the hippocampus of the developing fetus is devastating (Hippocampus 2000;10:94-110).

In order to change the trajectory of the lives of our poor patients – and address the Disproportionate Minority Contact mandate of the Juvenile Justice Delinquency Act – we’ve got to put a prevention system in place that, among other things, educates them about the dangers of maternal alcohol ingestion. Fetal alcohol syndrome is a problem that is 100% preventable.

Dr. Bell is president/chief executive officer of Community Mental Health Council Inc. in Chicago. He also serves as director of the Institute for Juvenile Research at the University of Illinois at Chicago, and is director of public and community psychiatry at the university.