Is It Really Autism? The Misdirection of Misdiagnosis

This psychologist doesn’t give Joey tests. Rather, she sits down on the floor with him and attempts to engage him in play that will create a sense of connection. By the end of the session, Joey is displaying small “islets of normalcy.” The psychologist says that while Joey does have a developmental delay, she is not seeing clear signs of true autism. She does the detective work of examining Joey’s medical records and finds that he suffered chronic ear infections as a toddler. Understanding these infections as the cause of Joey’s social communication delay, the psychologist guides the parents toward a play-based model of treatment for Joey, and recommends that he attend a typical kindergarten.

Research for this article led me to consult Dr. Shoshana Levin Fox, child psychologist, play therapist, autism specialist, and the author of the enlightening and accessible book An Autism Casebook for Parents and Practitioners: The Child Behind the Symptoms, which is based on her work of 25 years at the renowned Feuerstein Institute in Jerusalem, working alongside the brilliant and innovative late psychologist Professor Reuven Feuerstein.

I asked her about the alarmingly high number of “Joeys” I was encountering in my research. (Much like diagnoses of ADHD, autism diagnoses are growing exponentially over the years.)

“So many children with all types of social and communication problems are being misdiagnosed with the autism spectrum diagnosis (ASD) and are being ill-served by the conventional ‘orthodox’ methods of assessment which focus on listing symptoms. A focus on symptoms risks overlooking both the child’s strengths and the underlying causes of a developmental problem. Many of the children I saw who had been assessed using symptom-focused means were not autistic at all. Most had developmental problems, but they had ended up in the ‘autism basket.’”

Levin Fox believes that this is happening in large part, though not solely, because the official autism criteria have changed from psychiatrist Leo Kanner’s very tight description eighty years ago to an expandable range of spectrum symptoms, creating a lack of clinical clarity and specificity. Kanner’s focused definition has been lost, even discredited in the field, and replaced with the concept of autistic spectrum, which she considers far too elastic.

“As a psychologist, I want the words I use to clarify, to shed light, and not confound or confuse developmental problems. If there’s an underlying developmental problem, I want to know what it is, and I want to troubleshoot. There is a difference between a child who is genuinely autistic and one whose symptoms are ‘autistiform’ [autistic-like]. And if a child is genuinely autistic, I want to know that; but that doesn’t mean that is the end of hope for the child. There is so much that can be done even when the diagnosis is correct.

“There are no more unique children anymore, there are no children with idiosyncrasies… they’re all just ‘spectrum.’ And once they’ve been labeled ASD, everyone working in a conventional way tends to explain everything challenged or unique about the child in terms of ‘spectrum.’ They look for reasons to justify the diagnosis instead of looking for the child’s strengths, which Feuerstein emphasized, calling them ‘islets of normalcy.’

“Many people assume that autism is genetic, that children are ‘born like that.’ Here again, at the Institute we were very unorthodox. I sat across from too many parents who were weeping their hearts out, ‘I remember my baby when he was one and a half. He was so warm, alert, and playful; he had precocious speech. Then something happened. I feel like I lost my child.’ This child wasn’t born that way. And even if he had been, at the Institute we aimed to create for every child what Feuerstein called a ‘profile of modifiability.’”

I asked Levin Fox what the implications of an autism misdiagnosis might be.

“Often children’s strengths are undervalued or ignored, the very strengths that can help a child overcome difficulties. On the other hand, underlying difficulties are often overlooked or not addressed as they should be, with practitioners assuming that all has been clarified by the spectrum diagnosis. There is also the emotional impact on parents whose child has received an autism diagnosis. Parental responses may range from upset to depressed to devastated to grieving. Developmental time is then lost. The child needs the most a parent can give, and the parent is understandably going through enormous stress.

“Another problem is that the expectations of parents, teachers and therapists tend to be lowered for the diagnosed child. Then, particularly in clinics where there is a focus on symptoms rather than on the potential of the child, educational placement and treatment recommendations are made according to what may well be a falsely positive diagnosis.”

In answer to my question about what kinds of developmental problems she had observed that had been misdiagnosed as autism, Levin Fox cited most commonly emotional difficulties, hearing impairments, typical children who just needed a little more time, or physiological complications, such as genetic syndromes or oral dyspraxia (difficulty moving speech-producing muscles). “Many of these problems are correctable. Yet even with the knowledge of underlying symptom roots, the system is reluctant to let go of the autism diagnosis.”

Still, as a writer, I like to have names for things. I asked Levin Fox if it isn’t better to have a clear name for what is wrong. Her response: “Not every child has a label.”

Which led, of course, to my question, if one can’t really rely on the accuracy of an ASD diagnosis, what can a parent do?