Saturday, January 19, 2013

Recovery After a Diagnosis of Autism?


I think it depends on how you define recovery. What is interesting is that the research cited in this article found that those in the "recovered" group had better social and communication skills than a group of people with a diagnosis of Asperger's. 

By definition, people with Asperger's have difficulties with social skills.

The lack of deficits in social skills by those in the "recovered" group is rather interesting and provocative.

Here is the article and some relevant excerpts:

Some With Autism Diagnosis Can Overcome Symptoms, Study Finds by Benedict Carey Jan 16, 2013 http://www.nytimes.com/2013/01/17/health/some-with-autism-diagnosis-can-recover-study-finds.html?nl=todaysheadlines&emc=edit_th_20130117&_r=0

[Excerpted] “This is the first solid science to address this question of possible recovery, and I think it has big implications,” said Sally Ozonoff of the MIND Institute at the University of California, Davis, who was not involved in the research. “I know many of us as would rather have had our tooth pulled than use the word ‘recover,’ it was so unscientific. Now we can use it, though I think we need to stress that it’s rare.” 

...In the study, a team led by Deborah Fein of the University of Connecticut at Storrs recruited 34 people who had been diagnosed before the age of 5 and no longer had any symptoms. They ranged in age from 8 to 21 years old and early in their development were in the higher-than-average range of the autism spectrum. The team conducted extensive testing of its own, including interviews with parents in some cases, to gauge current social and communication skills....

On measures of social and communication skills, the recovered group scored significantly better than 44 peers who had a diagnosis of high-functioning autism or Asperger’s syndrome....

Majia here: Its important to emphasize that Dr Fred Volkmar noted that "recovered" children can go on to have difficulties with stress and depression later in life, which implies that these former "autistic" children retain a sense of difference that may impact their lives.

My oldest son in many ways illustrates "recovery." At age 2 he was not talking and was banging his head into walls. At age 16 he is an honors student in math and science, student athlete, and an active member in clubs at his high school. He certainly meets nearly all criteria for successfully overcoming the communication and sensory filtering deficits that so hampered his development when very young.

However, he still finds interpersonal relationships challenging. 

I've encountered many young people in the university who also struggle interpersonally despite their quick intellects.

People who struggle interpersonally with social relations do face increased risks for anxiety and depression and sometimes their social limitations impact their career development.

I don't know if the study counted as "normal" people with subtle difficulties socially. The description of the study excerpted above suggests that the recovered group had normal social skills. 

However, years of therapy aimed at improving communication skills may have the effect of masking interpersonal awkwardness.

The question is does interpersonal skills training change the sense of being different that people on the autism spectrum often experience? 

Does the recovered group feel "different"? Or, is the experience of standing apart, which is so frequently described as a core autistic feature, still present? This sense of being different can be a strength because it allows perspective, but it can also produce a sense of dislocation and existential anxiety.

The study looked at behaviors rather than the experience of consciousness so this answer remains undisclosed.

I personally believe it is an important one because the experience of standing apart can have negative implications for one's socialization in private and public life.

Its important to reiterate and emphasize that each child has the potential to develop in healthy and happy ways based on positive and supportive experiences. 

Children with a diagnosis of autism need extra supports and their parents do also given the challenges of raising kids with special needs. For some kids, these extra supports may "normalize" their differences, allowing them to blend in with the herd. Blending may make life easier. 

But the mystery of why "normalization" techniques work in some instances and not in others may never be fully explicated. Instead of trying to identify which kids will normalize, I wish that we could attempt to optimize the educational, nutritional, and socio-emotional well being of all children, while providing greater supports for families struggling to enable their kids because of a wide range of difficulties including not just disability, but poverty as well. And let us never give up on a person based on whether they become "normal" or not. 

(These comments in no way reflect a criticism of the study but my personal thoughts on the policy implications)

Let us include in our society all people as full persons deserving of love and support no matter their differences and let us not count as failures those who fail to "normalize."

My book on autism:
 

 

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