comment on: “Recovery” from the diagnosis of autism – and then?

1 May

Before commenting on the paper, there are a few general comments on the idea of recovery that need to be addressed. The fact that some people are diagnosed as autistic and later are found not to be autistic is not a new idea. Here’s a study from 1975 where 75% (of an admittedly very specialized) subgroup were diagnosed as autistic and later found to have “…social responses appropriate to their level of function; those who did not generally were over 3 years of age at the time of their first examination or had initial DQs of 35 or less”. I.e. they were no longer considered autistic. The idea that losing a diagnosis would be labelled “recovery” does seem to be a new idea. “Recovery” implies that one was originally not autistic, became autistic and was later “recovered” to the original state. Whatever one’s stance on whether that accurately describes autistic regression, it doesn’t describe at least most of autism.

Given this, I find the use of the term “recovery” by academics to be problematic at best. My personal feeling is that the authors of the study below shouldn’t have used the term. But it’s worth noting that this, like many topics in autism, is a minefield (no safe place to stand). When a team discussed kids as having an “optimal outcome” from autism, they too came under a great deal of criticism.

All this said, a new study came out discussing kids who were diagnosed as autistic (age 4 or younger) and two years later did not meet the criteria for a diagnosis. This group was followed up later (about age 10) and were found to have significant challenges. In fact, some had declined in Vineland test scores.

And, a “substantial minority” were once again autistic, according to the parents.

So, “recovery” may not be all that it’s cracked up to be. But is there more valuable lessons that we can learn from this? Well the researchers point out that these kids would have and still could benefit from significant support. Clearly, an autism diagnosis is the be-all and end-all of what should determine a child or adult’s need for support.

Here is the abstract:

Background: The aim of this study was to follow up the 17 children, from a total group of 208 children with autism spectrum disorder (ASD), who “recovered from autism”. They had been clinically diagnosed with ASD at or under the age of 4 years. For 2 years thereafter they received intervention based on applied behavior analysis. These 17 children were all of average or borderline intellectual functioning. On the 2-year follow-up assessment, they no longer met criteria for ASD.
Methods: At about 10 years of age they were targeted for a new follow-up. Parents were given a semistructured interview regarding the child’s daily functioning, school situation, and need of support, and were interviewed using the Vineland Adaptive Behavior Scales (VABS) and the Autism – Tics, Attention-deficit/hyperactivity disorder (AD/HD), and other Comorbidities (A-TAC) telephone interview.

Results: The vast majority of the children had moderate-to-severe problems with attention/activity regulation, speech and language, behavior, and/or social interaction. A majority of the children had declined in their VABS scores. Most of the 14 children whose parents were A-TAC-interviewed had problems within many behavioral A-TAC domains, and four (29%) had symptom levels corresponding to a clinical diagnosis of ASD, AD/HD, or both. Another seven children (50%) had pronounced subthreshold indicators of ASD, AD/HD, or both.

Conclusion: Children diagnosed at 2–4 years of age as suffering from ASD and who, after appropriate intervention for 2 years, no longer met diagnostic criteria for the disorder, clearly needed to be followed up longer. About 3–4 years later, they still had major problems diagnosable under the umbrella term of ESSENCE (Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations). They continued to be in need of support, educationally, from a neurodevelopmental and a medical point of view. According to parent interview data, a substantial minority of these children again met diagnostic criteria for ASD.

Keywords: autism spectrum disorder, autistic traits, AD/HD, A-TAC, Vineland, cure

Here is a video presentation that was published along with the paper

By Matt Carey


One Response to “comment on: “Recovery” from the diagnosis of autism – and then?”


  1. comment on: When an Early Diagnosis of Autism Spectrum Disorder Resolves, What Remains? | Left Brain Right Brain - May 1, 2015

    […] Having just discussed a study on what happens after autism “recovery” it may be worth taking a look at another study that just came out this week. This study isn’t yet published but was presented at a conference: […]

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