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.
typo….there aren’t enough hours in the day to accommodate this intensity of therapy (5th paragraph, 5th sentence).Likely, this is meant to be per week:
“Furthermore this therapy was intensive entailing 26 +- 14 hours per day of behavioral intervention. “
Thanks. Correction made.
My daughter was diagnosed with PDD/NOS. She has what can only be called a spectacular outcome. Graduated Magna Cum Laude in Communication Arts and is currently engaged to a wonderful young man and works in finance. There was some questions about her diagnosis with her speech and language therapists thinking her diagnosis should have been SLI not the broad concept of ASD. Optimal outcomes are associated with a PDD/NOS diagnosis and speech before 36-48 months.
Happy about her outcome. You are a proud parent.
I’m an example of someone who partially recovered but not 100%, so I believe spontaneous recovery is possible. The only intervention I really had was psychoanalysis which is scoffed at nowadays. The brain continues to develop throughout adulthood and probably corrects itself in some way, though I don’t know enough about neuroscience to know why. Also, astrocytes provided repairation to damaged neurons to a certain extent, but that might be strokes rather than developmental lesions.
Thank you once again for another article on the far-ranging autism topics you cover.
One question for clarification- is the term “regressive autism” used to indicate both of these different conditions: autism symptoms that emerge after seemingly typical development AND the receding of autism symptoms/diagnosis later in life?
If so, how confusing!
Thank you for the comment. I know the terms are confusing. I only used the term “regressive” because it is used by the NIMH in their presentations as part of their summary on this particular project. I would have selected other terminology.
I think it all depends on what is the cause of the autism.Autism is merely a symptom presentation with many underlying causes.Cerebral Folate Deficiency,which I have,can show dramatic improvement,if not outright reversal,of autism,over time,as long as treatment is continued.This is perhaps the best example we have seen to date of autism as a treatable condition,like diabetes,epliepsy,etc.I have been treating my CFD daily since 2009.
Cerebral Folate Deficiency is now shown to exist with any number of conditions,autoimmune,chronic infection,metabolic,or single gene mutations.In my case,we know I have some sort of genetic metabolic disease,but we don’t know what it is.A $9000 Whole Exome Sequencing or signing up for the NIH Undiagnosed Diseases Program are my current options.
Most of the disorders CFD is found in have regression as a feature.Regression once or many times.CFD is being diagnosed more and more,in an ever increasing variety of conditions,with dramatic improvement or reversal of autism as a result from treatment as a common feature.This will have to be more widely accepted sooner or later,both by dctors and the public at large.
My own autism diagnosis was one of being verbal,but otherwise very low functioning.I had been rediagnosed as an adult,following yet another regression.My rediagnosis as an adult was similar to the one I had as a child.I had recurring regressions,starting as an infant,triggered by acute illness or infection.Both times,I was considered too low functioning to live on my own,and my mother was presented with papers to sign to put me in a residential treatment facility.
In a blatant violation of the HIPAA Act,the hospital where my mother died,found out about my autism diagnosis,and the severity of it,by looking into my medical records without my knowledge.They were going to have Adult Protective Services do a home invasion to take me away until my landlady stepped in.to stop them.Thanks to my being treated for CFD,I was able to demonstrate to APS I was able to live independently.
Incredible story Robert. The Whole Exome Sequencing was how we discovered my grandson’s condition. He was the first person described with a mutation in a particular gene.