Thursday, March 10, 2011

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

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


Happy Elf Mom (Christine) said...

I agree completely. Unfortunately, when I hear about autism recovery, I think of what you call "woo." The difference between no longer technically qualifying for a label and not doesn't mean the child didn't have autism or somehow got rid of it. And I suspect the children who are able to emerge through all this therapy without a diagnosis are the ones with plenty of money from Mom and/or people who were not severely affected in the first place. The rest of us will have to make do with zero or little therapy and, if the richer people aren't to be affected, less political clout later. Very discouraging I must say.

Floortime Lite Mama said...

I am completely with you
Coincidentally I was just listening to Deborah Fein's Podcast
I seriously dotn care about the language
or whether R is deemed ASD or not
I am all for him functioning well in society

Usethebrains Godgiveyou said...

Compared to where Ben was at age 3 and where he is now, he is recovered in my mind. Funny, the less I did, the more recovered he seemed. I wonder if he would have picked up language on his own if I hadn't presented it to him visually at age 4. I'll never know. I've always done the best I could, and so does he.

For the most part, I think I might like/love him more than if he hadn't been so unique! This is looking back, though, 'cause it was scary when he was little.

karensomethingorother said...

EXCELLENT post. Thanks so much for the food for thought.

sharon Morris said...

I am in complete agreement with this post. And really like the comments above.
r.b, I particularly like your comment about liking/loving him more than if your son had not been so unique. I feel the same way.

Kim Wombles said...

Thank you all for your comments. :-)

Anonymous said...

While there are obviously difficulties to autism in general and my son's autism in particular, I think that autism has also given him great strengths which I'm only at the tip of the iceberg of discovering. His memory is amazing, his ability to retain information. This is something we're only just discovering as he was non-verbal until relatively recently, but the amount of things he can recite now with only a few exposures is really amazing to me. I also agree with the above comments that his quirks and uniqueness have probably made me love him so much more. He's a real treasure, as I'm sure most (if not all) of these kids are.

A Ventography! said...

Well put. I agree with you completely... I have never cared about what label was given to my daughter. I just wanted her to reach her full potential, be able to function if/when I am no longer here, and be happy and healthy. She was so physically ill for so long and as I improved her health, her symptoms of autism got so much better. Great post.



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