Matt Carey from the Left Brain Right Brain Blog has recently brought attention to the possibility of recovery in autism. His blog site may be accessed from my front page (corticalchauvinism.com) under blogs that I follow. I thought this would be a good opportunity to summarize some of the information I have in regards to a similar study sponsored by the NIMH.
In 2007 the NIMH initiated a study that attempted to collect a large amount of clinical and laboratory data from patients with “recovered” autism, that is, cases where patients apparently improved enough to have lost their original diagnosis. Although the federal government and a few acknowledged clinicians (e.g., Catherine Lord, Patricia Howlin) recognized that there could be good outcomes in autism the DSM5 reads that autism is most commonly a lifelong disorder. Questions therefore remain about what elements could have brought about these favorable outcomes and whether such patients could be considered true or complete recoveries.
The NIMH project, under the supervision of Susan Swedo, advertised for recruitment primarily though word of mouth in layman organizations in both the United States and Canada. Using this biased recruitment method 350 families answered the initial inquiry. After a long telephone interview and revision of records only 11 patients were recruited into the study. Lack of interest stemming from the families and stringent inclusionary/exclusionary criteria prevented participation in the majority of cases.
Inclusion within the study required fulfillment of DSM-IV criteria for autism, submission of wide-ranging materials/records, and multiple independent confirmation of diagnosis. Once in the study the patients underwent extensive cognitive, executive, language and social assessments.
Data for the eleven participants indicated that first concerns were raised at about 18 +- 7 months and an autism diagnosis at 36 +- 8 months. The most frequent early concerns related to social deficits (n=7), language delays (n=5), and repetitive behaviors (n=6). It is important to note that in these cases intervention started at 30 +- 10 months. Thus, parents although concerned, did not wait for a diagnosis to be established before initiating therapy. Furthermore this therapy was intensive entailing 26 +- 14 hours per week of behavioral intervention. In addition several of the patients were receiving special diets or dietary supplements. Only 4 had received psychiatric therapies (i.e., drugs).
Changes entailing recovery were observed early, usually by the end of their first year of school. On examination of the patients, that is after presumed recovery, 8 were non-spectrum and 3 were PDD-NOS. There were few autism symptoms on SRS and adaptive and social skills (by Vineland and SRS) were roughly within normal levels. During Psychiatric interview 5 of the patients suffered from anxiety and 1 had ADHD*. The average IQ for these patients was 111.
In summary a minority of autistic kids do improve and manifest recovery of symptoms. This particular cohort was characterized by markedly tenacious parents and high functioning autistic children. It should be stressed; however, that similar tenacity in other autistic individuals have not provided for regression of symptoms. Even after recovery parents had persistent concerns about social competence (e.g., is he really going to fit in college?). Anxiety was a common residual symptom; others included decreased eye contact, social awkwardness and strong interests. “Recovered” patients still had problems with language organization and poor executive functions (e.g., mental inflexibility). However, they were all empathetic and easily bonded with their examiners.
*The fact that only 1 out of 11 patients in the series had ADHD is surprising. Other reports on equally small series suggest that about one quarter or more of so-called recovered patients comply with a diagnosis of ADHD.