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Autism Recovery: Not a surprise in the Research World, but Another Divide in the Autism World

March 10, 2011

Is it merely a rumor? Is it a dirty secret only traded in backstreet biomedical support groups and web forums? Is autism recovery (bad terminology, by the way) a myth?

Of all the things in the autism world that surprises me, this idea is perhaps one of the most interesting to consider. You do see adults on the spectrum arguing they are fine as they are, whatever the level of impairment may be and they don’t need help. Okay. Your life, your right, your choice. If you’re fully functional, self-sustaining, and a happy camper, if your autism isn’t limiting your ability to function in the world in the way you’d like to, good for you. Then you’re not disabled, are you? 

I think there’s room to discuss language usage; I think there’s room to work towards the least stigmatizing language as possible, to work to promote the value of all people, regardless of functional levels. And I absolutely don’t think of my children as broken or needing fixed. They are, however, either disabled significantly like my son is or dealing with significant issues that do rise to the levels of impairments when  assistance is not rendered. They  need assistance and remediation to overcome or work around these issues, and I can only hope and work my ass off to help them to do so. 

So maybe recent discussions in the blogs on the directory reflect a semantics issue rather than a true divide, but maybe they do not.

Scientifically, though, is there any real debate about the ability of children to move off of the spectrum, to lose their diagnosis, to in effect recover from autism? No, I don’t think there is. In 2007, Kleinman et al. write that 19% of young children in their study moved off the spectrum over time. Later, in 2010, one of the et al.’s from the Kleinman study, Deborah Fein,  revealed that based on her research, she “believes that at least 10 percent, and possibly as many as 20 percent, of children who receive a diagnosis of autism or autism spectrum disorder can “recover” from it if they are provided the right kind of intensive behavioral therapy.” 

The whole goal of early childhood intervention is the assumption that the earlier one starts, the more progress the child will make, the more likely the child will be to “recover” from autism, or at least to mitigate the more disabling aspects.

Everything we do as parents to help our children overcome their issues, surmount the obstacles facing them, is done with at least an eye towards helping to leave the crippling aspects of autism behind them. Perhaps some parents work hard at the same time to look towards positives they believe their children’s unique brain wiring confers on them. I believe here we’re going to see the ideological divides in parents and individuals: those who ascribe gifts and benefits to the way autism has shaped their child or themselves, given them talents or unique insights, and those who see nothing in autism but the misery the child or person suffers.

In the end, it’s a semantic and ideological divide predicated on the perception of autism itself. I can’t fix that, render it moot.

I can say that if I can move my children towards being able to function capably in society in a way that their unique issues are not disabling, I don’t give a damn whether they have the label or not. I don’t think they need to be fixed because I don’t see them as broken. I see their issues as just that: issues that impair functioning, and I think that arming them with the tools to surmount those issues is my job as their mother. I do see them as complex individuals with a unique cluster of issues that can be or are disabling, and I would do anything within reason to help them overcome the disabling aspects, and I take hope in the realization that when scientific examination of the loss of the diagnostic label is addressed, anywhere from 1 in 10 to 1 in 20 sufficiently overcome their issues to lose a diagnostic label that in the medical world connotes disability.

Kleinman, J. M., Ventola, P. E., Pandey, J., Verbalis, A. D., Barton, M., Hodgson, S., & … Fein, D. (2008). Diagnostic stability in very young children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 38(4), 606-615. doi:10.1007/s10803-007-0427-8


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