This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.

And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!

Tuesday, November 25, 2014

NIMH Study Validates the Possibility of Recovery From Autism

In February of 2013 the National Institute of Mental Health published a study entitled "Optimal outcome in individuals with a history of autism" that found that recovery from autism does occur. The study was designed to find out whether reports of recovery were due in fact to misdiagnoses, and at what level these individuals were functioning after the loss of the diagnosis:

"Although autism spectrum disorders (ASDs) are generally considered lifelong disabilities, literature suggests that a minority of individuals with an ASD will lose the diagnosis. However, the existence of this phenomenon, as well as its frequency and interpretation, is still controversial: were they misdiagnosed initially, is this a rare event, did they lose the full diagnosis, but still suffer significant social and communication impairments or did they lose all symptoms of ASD and function socially within the normal range?"

The study found that "Optimal outcome and TD (typically developing) groups' mean scores did not differ on socialization, communication, face recognition, or most language subscales, although three OO individuals showed below-average scores on face recognition. Early in their development, the OO group displayed milder symptoms than the HFA group in the social domain, but had equally severe difficulties with communication and repetitive behaviors."

And reached the conclusion that "Although possible deficits in more subtle aspects of social interaction or cognition are not ruled out, the results substantiate the possibility of OO from autism spectrum disorders and demonstrate an overall level of functioning within normal limits for this group."

It cannot be understated how important this level of recognition for the reality of recovery from autism is. I know some of the families who participated in the study, and can say that they were impressed at the level of detail and the open-mindedness of the researchers. This gives me a lot of hope. I just wish that the word would spread faster, as many if not most people still do not believe that recovery is real.

This article from Science Daily provides more information about the study and how it was conducted. This study is the first in a series, apparently:

"This study cannot provide information on what percentage of children diagnosed with ASD might eventually lose the symptoms. Study investigators have collected a variety of information on the children, including structural and functional brain imaging data, psychiatric outcomes, and information on the therapies that the children received. Analysis of those data, which will be reported in subsequent papers, may shed light on questions such as whether the changes in diagnosis resulted from a normalizing of brain function, or if these children's brains were able to compensate for autism-related difficulties. The verbal IQs of the optimal outcome children were slightly higher than those with high functioning autism. Additional study may reveal whether IQ may have been a factor in the transition they made."

"All children with ASD are capable of making progress with intensive therapy, but with our current state of knowledge most do not achieve the kind of optimal outcome that we are studying," said Dr. Fein. "Our hope is that further research will help us better understand the mechanisms of change so that each child can have the best possible life."

Scientific American also ran an article about this study entitled "Is It Possible to Recover From Autism?" that gives more insight and mentions another, similar study that is being done to explore autism recovery. From this article:

"This finding is not the first to suggest that some young adults with autism lose their symptoms. A 2008 literature review reported that 3 to 25 percent of affected people eventually recover. But the recent study was especially rigorous."
More about the study design "An expert diagnostician thoroughly reviewed the early records of all recovered participants to confirm that they truly had autism when they were younger, and she correctly rejected 24 reports from kids with nonautism diagnoses (such as language disorders) that had been slipped in as foils, verifying that her diagnostic technique was sound. These measures made researchers confident that the now typically functioning children had not initially been misdiagnosed. The team also set a relatively high bar for recovery: participants not only had to be free of autism symptoms, as indicated by a battery of tests—they also had to have typically developing friends and be fully included in regular education classrooms."

And, about the other study that will son be published "Catherine Lord, director of the Center for Autism and the Developing Brain at Weill Cornell Medical College, has been following a group of about 100 people with autism from the time they were diagnosed at age two through their early 20s. Study participants completed a large battery of tests every few years as children and again at age 18, and parents have been filling out questionnaires every year."

"Like Kelley and her colleagues, Lord has found that a handful of participants lose their autism symptoms. Moreover, she says, “their eye contact, gestures, the way they hold their body, the way they talk about their friends”—behaviors that have long been thought to be difficult to improve on—are indistinguishable from those of typically developing adults. They are also functioning well in daily life, holding down part-time jobs while attending college. The researchers fittingly refer to this group as having a “very positive outcome.” A more sizable group is considered “more able” than the remaining adults in the sample—they have no cognitive impairment and are generally doing well academically, although they still have clear autism symptoms. A paper presenting these results is currently under consideration at a peer-reviewed journal."

There has been another study published in 2014 that had similar findings to the NIMH study called

Characteristics of Children Who Lost the Diagnosis of Autism: A Sample from Istanbul, Turkey
 This study found that "It could be concluded that a group of children with an autism diagnosis could lose the diagnosis of autism upon early intervention. High IQ and the development of communicative and language skills at an early age could be the most powerful factors contributing to an optimal outcome."