I just read a fascinating editorial in the Journal of Child Psychology and Psychiatry (64:5 (2023), pp. 711–714), titled Is Autism Overdiagnosed? This is a very controversial question. When I was growing up, Autism was not as “popular” as it is today. There were definitely people with it, both diagnosed and undiagnosed, but it wasn’t something people actively sought a diagnosis for, whether for themselves or their child. These days, it seems like almost every other child or adult claims to have Autism.
Don’t get me wrong—it’s great that society has become more accepting of people with disabilities. However, I don’t see anyone with clogged ears rushing to a doctor to find out if they have a hearing impairment. So, why this fascination with being diagnosed as Autistic?
Whenever a friend or coworker asked this question in conversation, I always had the same theory. Policies have been put in place that allow children with Autism access to special services and more intensive instruction. That’s enticing for some parents. But then a friend would ask, How do they get that diagnosis? Are all parents bribing psychologists and psychiatrists? That’s one question I couldn’t answer—until I read this editorial.
This editorial explains why and how Autism is being overdiagnosed. It begins by discussing instruments (a combination of observations, interviews, interactions, and assessments) developed in the 1960s to help Autism experts diagnose children.
“First, diagnostic instruments were developed to standardize the way symptoms are elicited, evaluated, and scored. These diagnostic interviews were either highly structured for use in large-scale studies (e.g., the Diagnostic Interview Schedule (DIS)), by lay interviewers without a clinical background, and with a style of questioning that emphasized adherence to the exact wording of probes, reliance on closed questions with simple response formats (Yes/No), and recording verbatim respondents’ answers without interviewer’s judgment contribution. By contrast, semi-structured interviews (e.g., the SADS) were designed to be used by clinically trained interviewers and adopted a more flexible, conversational style, using open-ended questions, utilizing all behavioral descriptions generated in the interview, and developing scoring conventions that called upon the clinical judgment of the interviewer” (Fombonne, 2023, p. 1).
In short, some tests were created to standardize every step and word, enabling even someone without a background in Autism to diagnose a child.
In the 1980s, nosographies were introduced for the DSM (Diagnostic and Statistical Manual of Mental Disorders) and ICD (International Classification of Diseases). A nosography is a written classification and description of diseases, designed to apply a diagnostic label to a situation. As you can imagine, these assessments were updated and new ones were created over the years.
In the late 1980s, the Autism Diagnostic Interview-Revised (ADI-R) and the Autism Diagnostic Observation Schedule (ADOS) were developed. Both tools were designed to help expert clinicians in their evaluations. Unfortunately, these instruments were “extended to large numbers of community providers who may not have prior experience in Autism and its diagnosis” (Fombonne, 2023, p. 1). This allowed providers to issue certified and reliable diagnoses to children “following two days of training seminars” (Fombonne, 2023, p. 1).
This means clinicians without expertise in diagnosing Autism could attend a two-day seminar on the ADOS and then diagnose children. Fombonne explains that far more expertise is needed, and this is just the beginning of the flawed diagnostic process contributing to the overdiagnosis of Autism Spectrum Disorder in children.
Another issue arises: what about research studies? If diagnoses are handed out by unqualified providers, are the results of studies on Autism also flawed because some participants might not actually have Autism?
A study by Dr. Susanne Duvall, Neuropsychologist and Associate Professor at Oregon Health & Science University, found that “of 232 school-age children and adolescents with a pre-existing community diagnosis of ASD referred to our academic center for a neuroimaging study [and] only 47% met research criteria for ASD after an extensive diagnostic re-evaluation process” (Duvall et al., 2022). Shockingly, all 232 of these false-positive diagnoses met DSM criteria (Fombonne, 2023, p. 2).
This suggests not only that the instruments used to diagnose Autism are flawed, but also that research studies based on these diagnoses may be unreliable.
Fombonne further discusses how providers often overgeneralize interactions and behaviors, skewing results. He provides an example:
“Children may talk repetitively about dinosaurs they saw during a recent museum visit, which may be age-appropriate in young children; however, for this intense interest to be considered as excessive or ‘circumscribed,’ other features must be demonstrated (odd quality, interference with demands, etc. . .). Likewise, abnormal eye gaze is not specific to ASD and is observed across a number of other clinical conditions. To count toward an ASD diagnosis, eye contact does not simply need to be absent or decreased, but evidence of poor modulation in the dynamic context of a social interaction must be brought” (Fombonne, 2023, p. 2).
Some “community providers” are attributing atypical behaviors to Autism symptoms, leading to a significant increase in diagnoses. While some see this as progress in disability diagnostic science, it’s actually overdiagnosing.
Let’s play devil’s advocate: Who cares? Why does it matter if children are diagnosed with a disability they don’t have?
The problem is that there aren’t enough Special Education teachers and staff to provide intensive instruction to all the children being diagnosed with Autism. I work in special education, and it’s disheartening to think that students falsely diagnosed might take spots away from students who truly need services.
Don’t get me wrong—helping all children is important. But I specialize in assisting students with mental, emotional, intellectual, cognitive, and/or physical disabilities. Most of my services are provided one-on-one, and I would rather help a student who truly needs it than one falsely diagnosed. Students without disabilities have access to other teachers and staff to meet their needs.
The editorial also addresses Autism checklists, noting how people today are diagnosing themselves or their children based on broad characterizations. Parents and providers often check off atypical behaviors to encourage self-diagnosis.
I highly recommend reading the editorial. It’s crucial not to overgeneralize Autistic behaviors. The flaws in Autism diagnoses began in the 1960s and have expanded exponentially. Today, every introverted or extroverted tendency risks being categorized as Autism Spectrum Disorder. More research is needed to refine how we identify psychopathological disorders.
Thank you for reading.
God bless you all!
References
Duvall, S., Greene, R., Phelps, R., Markwardt, S., Rutter, T.,Grieser Painter, J., . . . & Fair, D. (2022). Factors associatedwith unconfirmed/inaccurate community-based ASD diag-nosis in a research referred sample. In International Societyfor Autism Research Annual Meeting. Austin, TX, USA.
Fombonne, E. (2023), Editorial: Is autism overdiagnosed?. J Child Psychol Psychiatr, 64: 711-714. https://doi.org/10.1111/jcpp.13806