3/10/2011

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.



References
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

11 comments:

farmwifetwo said...

Recovery happens. I have one that will probably even lose the NLD label at his next psychometry testing in gr 8. Will he still have anxiety issues... probably. Will he still be rather litteral... probably. Will his social skills still need tweaking... probably. Will we stop teaching him simply b/c we no longer have a "label"... No. Will he need supports... NO. Therefore IMO, no label. I don't need supports but according to his last Dev Ped 5yrs ago his Mother probably has Asperger's... And???? I'm not disabled, I don't need supports and therefore I don't need a dx.

So, recovery/cure exists. As for the intensive behavioural therapy, my eldest never received any. My son received speech - school and private, OT, homeschooling, tutoring and strict behaviour expectations at home - no headbanging, no destruction.

That recovery is my end goal with both children... independance. Yes, I realize I probably will never get to full independance with the younger. BUT, I'm going to keep going, b/c my next goal is that he can function within society and take part in all things.... with a little help.

KWombles said...

Damn straight! It's why it surprises me when I see it argued that 1) it can't happen, or if it did it must not have been autism in the first place, and 2) that there are folks who would truly not intercede to help their children overcome their issues.

Bobby's autism impacted him very differently when he was 5 than it does today. The girls continue to make gains and make progress.

In the right settings, their social issues and communication issues aren't as severe or as apparent, as well.

Sigh.

Joeymom said...

As Mom-NOS might say, my kid is a hair dryer in a toaster world.

He may learn to make toast. But he will still be a hair dryer. You can't make a hair dryer into a toaster, or a toaster into a hair dryer. I can, however, teach my hair dryer to thrive in a toaster world, and make drying hair a good alternative for his well being and independence, instead of burying everybody in more toast.

When "recovery" is intended to mean "independence", well and good. Everyone has challenges, and we strive to help Joey meet his as much as we strive to help Andy, who is not autistic, meet challenges of his own. When "recovery" means "not autistic", I think there is a non sequitur there.

Cheryl D. said...

Great article! I read one of the studies that said that 10-20 percent of kids go off the spectrum through nothing but behavior therapy. We asked the psychologist that diagnosed my daughter about this when she reassessed my daughter a year after her initial diagnosis. She told me that the study I had read was nothing new. It's been long known that about that percentage does leave the spectrum--through behavior therapy. At the time, she thought my daughter was an excellent candidate due to the great gains she made during the first year. That was a year and a half ago, and I'm beginning to think that even if it does happen, my daughter will still have her quirks and challenges. However, she's developed empathy. She had great theory of mind. She's gotten to be pretty social and has a number of "normie" friends at school. Her progress has been amazing. No matter whether she ends up on the spectrum or off, I'm sure she'll be capable of going to college and having a terrific career. What more could any parent want?

Corabelle said...

recovery, cure, progress, all words, meaninless words. To who's standards are we using, when we use these words? Its fine to say that you love your children the way they are, but when a child grows up hearing, disability, damage,problem, recovery, cure,Its extreemly damaging to the child. Be honest with yourself, be honest with your children, and lets arge less about the terms and words, and work more together as people to help eachother and our children be the best we can be, whatever the difficulties.

Clay said...

I've fought my "demons", my flaws, and in many cases, came up with the upper hand. Against bullies, against being run off the job site for being different, against my own self-esteem that wouldn't allow me a nice life. With other combatants, such a having friends, a sex life, it seems we've called a truce, as I don't consider them worthy to fight for. I'm rowing my own canoe in calm waters, and enjoying the view. Que sera.

Life in the House That Asperger Built said...
This comment has been removed by the author.
KWombles said...

Thank you all for your comments. :-)

Secret Sunshine said...

Aw, I said something similar last month...

http://kaleidoscopezeal.blogspot.com/2011/02/semantics.html

I have 3 first cousins who also have children on the spectrum... one has Asperger's, one just started talking now that he's four, there is my son, who just started ABA therapy 6 months ago, right after being diagnosed at 18 months, and a 7 year old who has moved off the spectrum. He still has some very interesting traits related to ASD (he has the most constructive obsessions. I mean, he's great at school projects, and loves taking in factual and a lot of times statistical information). But there really isn't any impairment, at least no more than any average person may experience in one area or another. Sometimes people get upset that I would even say such a thing, but he's recovered. That doesn't mean I'm going to try to chelate the weird out of my own son or anything haha.

melbo said...

I think you're right that it is sometimes a matter of semantics. One person's idea of "recovered" is not another's.

I've had a few discussions with relatives about this concept as they've heard the recovery stories and seen my son's progress with their own eyes. They believe he is "recovering" but I tell them he is just learning to deal better with his challenges. I don't consider him recovered as he wasn't ill in the first place.

No insult to anyone else who feels their child has recovered but that is just the way I look at it.

Thanks for another great article.

Diane said...

I really like the way you've said this. All I want is for my child to be able to overcome the things that make it difficult for him to function, label or no label. If the label helps him to get the accomodations he needs or gives others a reason to work harder at being understanding, then it's serving a purpose. If he ever progresses to the point that the label no longer fits, it will still be a reminder of where we've been, and perhaps knowing that will be a source of hope for others who are on a similar journey.