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Alcoholism
Missing the Boat on Diagnosis
Why can't we get it right? Misdiagnosis of children with FASDs
Posted January 20, 2015
About a year ago, I got an email from Dr. Sally Anderson at the National Institute on Alcohol Abuse and Alcoholism (NIAAA). Dr. Anderson, the executive secretary of the federal Interagency Coordinating Council on FASD (fetal alcohol spectrum disorders) had a simple question. It is well known that the seeming simplicity of Dr. Anderson’s questions often belies an underlying complexity, but her question boiled down to this: “Where are the children with FASD?”
Many researchers long have speculated that children affected by prenatal alcohol exposure for the most part go unrecognized, partly due to an unknown maternal history of alcohol use during pregnancy, a lack of consistent facial dysmorphology and growth impairment across all diagnoses within the fetal alcohol spectrum, and the high rate of co-occurring mental health disorders in this population. This has been borne out by our experience in our own clinic at the Children’s Research Triangle (CRT), where we have noted that large numbers of children with FASDs had been incorrectly diagnosed prior to referral to our center. So we put together a study to examine what diagnoses these children had been assigned before being seen by our team and what treatments had been prescribed. That study was published this month in Pediatrics, the research journal of the American Academy of Pediatrics. Let me provide some explanation and share some highlights of the study.
Our clinic at CRT in Chicago is a mental health center specializing in the assessment and treatment of high-risk populations of children and adolescents, especially those in the child welfare system. CRT is not an “FAS clinic;” there are no specific criteria for referral, and behavior problems are the most common reason children are sent to us. After a full evaluation by our multidisciplinary team, approximately 30 percent of the children evaluated each year receive a diagnosis within the fetal alcohol spectrum.
The purpose of the study was to compare the diagnoses and treatments the children had been given before being referred to our clinic with the diagnoses and treatment recommendations they received after being evaluated by our specialty team. We pulled a blind sample of 547 foster and adopted children 4 to 18 years of age who had been evaluated in our clinic. Alcohol-related diagnoses were based on a full pediatric, neurological, dysmorphology, and neuropsychology examination conducted by our clinical team and were assigned in compliance with the University of Washington’s 4-digit code system for diagnosis.
The average age of the children was 9.4 years, and 63.8 percent were male. Racial and ethnic distribution reflected the general distribution of children under supervision in Illinois’ child welfare system. By far, the most common reason for referral of the 547 children to the CRT clinic was “behavioral problems.” At referral, 51 children (9.3 percent) had a diagnosis related to the effects of prenatal alcohol exposure. The most common mental health diagnosis at the time of referral was attention deficit hyperactivity disorder (ADHD) in 26 percent of the children, followed by posttraumatic stress disorder (PTSD), conduct disorder, oppositional defiant disorder (ODD), and reactive attachment disorder (RAD. However, following a full evaluation, there was a significant shift in the rate of alcohol-related diagnoses and in the rate and type of mental health disorders documented among the 547 children. Of the 51 children who had been referred to our center with a diagnosis within the fetal alcohol spectrum, 20 (39 percent) had been misdiagnosed and did not actually meet criteria for any alcohol-related diagnosis. And, as opposed to only 51 of the children having been thought to have a diagnosis within FASDs at the time of referral, comprehensive evaluation showed that actually 156 children (28.5 percent) met criteria for a diagnosis within FASDs. In brief, 80.1 percent of children with FASDs had never been diagnosed.
There also was a significant increase in the number of mental health diagnoses for the 156 children with FASDs. After evaluation, 147 (94 percent) of the children with FASDs had a co-occurring mental health diagnosis, and 104 (67 percent) had two or more mental health diagnoses. Although it is feasible that mental health diagnoses can change over time, learning disorders, communication disorders, and intellectual disability, objective and permanent signs of significant neurocognitive damage, had not been recognized in a large majority of the children with these disabilities.
As would be expected, these high rates of misdiagnosis and missed diagnoses resulted in inappropriate treatment. Following the comprehensive evaluation, significantly fewer children required the developmental therapy, physical therapy, and speech/language therapy that they had been receiving through the schools and instead needed services, especially family therapy, sensory integration treatment, and psychotherapy, that they previously had not been receiving. In addition, a number of children with FASDs required medical interventions they had never previously received: 27 children (17.3 percent) required extensive dental work and 8 (5.1 percent) children needed an ophthalmology evaluation. Also, attachment therapy was recommended for 33 children (21.2 percent), and educational services were recommended for 109 (69.9 percent) of the children with FASDs.
Recommendations for medication therapy also changed from the time of referral to the time following diagnosis of FASDs. Although 19 of the children with FASDs had been prescribed stimulant or psychotropic medications, the medications were not needed in 17 of the children and were discontinued. These findings demonstrate, to no one’s surprise, that FASDs frequently go unrecognized and mistreated: 86.5 percent of children and adolescents with FASDs had never been previously diagnosed or had been misdiagnosed, and treatment, including medications, had been incorrectly prescribed.
The historically confusing language and diagnostic terminology applied to alcohol-affected children and the perceived stigma against addressing alcohol use by pregnant women most likely contributed to this phenomenon. But, a survey of American Academy of Pediatrics members indicated that only 50 percent of respondents felt prepared to make a diagnosis within the fetal alcohol spectrum. Further, children’s health providers do not routinely consider prenatal alcohol exposure in the differential diagnosis of behavioral and learning problems.
This is an important issue if we are going to provide adequate services for children affected by prenatal alcohol exposure. Most studies show that 40-75 percent of children with FASDs are diagnosed with ADHD. However, it is a different picture of attention deficits. In addition, studies have demonstrated a different response to medication for children with FASDs as compared to children who were not prenatally exposed to alcohol. Of special importance, significant numbers of the children who were getting therapies that can be acquired through school services, such as speech therapy, did not need these therapies but required more intense forms of mental health therapy addressing attachment difficulties, behavioral difficulties, and sensory processing deficits, as well as the need for the child and family to participate in some form of psychotherapy. In addition, the need for special education services in the school and dental care often had been overlooked for the children who ultimately were diagnosed with FASDs.
The full study can be found in the January 2015 issue of Pediatrics, along with references for all the studies that formed the basis of our thinking. Clearly, it is time to come together to address the problem of alcohol use in pregnancy and its impact on the child. The new DSM-5 criteria for a diagnosis of Neurodevelopmental Disorder with Prenatal Alcohol Exposure will help establish a foundation for future efforts to screen, diagnose, and treat children with FASDs. Pediatricians and other children’s health care providers, the schools, and children’s mental health providers have a responsibility for early recognition of the child or adolescent with FASDs, referral to a provider who can conduct a full evaluation, and participation in the development of a targeted treatment plan that incorporates mental health treatment, behavioral management strategies, and special education services. Biologic, foster, and adoptive parents must advocate for their children, ensuring access to the therapeutic and support services the children and the families need.
It is the proverbial village that must address the needs of children with FASDs.
