Cure, Recovery, Prevention of Autism?

Subject: Cure, Recovery, Prevention of Autism?
Date: 06 Dec 1995 00:00:00 GMT
From: Phil Schwarz <pschwarz@IX.NETCOM.COM>
Newsgroups: bit.listserv.autism

I have not posted here in a long while, but I feel compelled to push other things aside and make the time to say something here.

I think that most people who seek a "cure" for their loved ones' autism do so with the best of intentions: they see their loved ones having difficulty or inability to function, and want to help them overcome those difficulties or inabilities.

However, the road to Hell is paved with the best of intentions.

They make the fundamental mistake of confusing autism itself -- which is a set of differences in the way the brain and mind are organized, expressed in different proportions and intensities in each autistic person -- with the impediments that arise secondarily to those differences, also in varying proportions and intensities. Saying "I want my child to learn how to learn", "I want my child to learn how to speak", "I want my child to be able to stop self-injurious behavior", "I want my child to be able to overcome the sensory distress he or she experiences", or "I want my child to be better able to interact with, and understand the behavior of, neurologically typical people" is very, very different than saying "I wish my child were not autistic".

The statement "I wish my child were not autistic" implies, at least to me as a parent, and also as an inhabitant of the borderlands of autism myself, that the parent making the statement seeks a change in the inner essence of who the child is: how he or she apprehends the world and organizes it and recreates it in his or her mind's eye, as we all do in our own way.

That is pretty fundamental stuff.

Would we feel as comfortable with the following statement, about equally fundamental stuff of which the self is made: "I wish my child were not female" ? Such sentiments are frowned upon in many cultures these days, and with good reason; sadly, they are still prevalent, harbored in secret where frowned upon, and expressed overtly where not.

What is really going on with that latter statement? Being female is not considered, at least in the cultures that frown upon that statement, a disability, overtly at least. (Although it could be argued in practical terms that it is a severe disadvantage, as long as one's earning power is 59 cents on the dollar because of it.)

So why would a parent harbor such a feeling, even covertly?

I think because they had, and still have, unmet expectations. Perhaps a boy would be easier to relate to, to bond with -- especially for a father. Perhaps the family has no boys. Perhaps the parents really really wanted a boy.

In any case, most of us parents eventually learn to lay such unmet expectations to rest, and love our children who arrived contrary to those expectations with all our hearts.

Perhaps some people wish they had a boy because a boy can be more successful in this society.

Most of us react to the unfortunate but stubbornly persistent fact that that is true, by helping our daughters succeed: giving them the moral support to enter heretofore-boys-only realms of endeavor like math or science or sports or upper management. We easily recognize, isolate, and work to mitigate the factors that pose impediments without confusing them with the aspects of being female that is the inner essence of who our daughters are as persons.

It's easy when the factors posing impediments are clearly wrongs in the society.

Now go back to the statement "I wish my child were not autistic". Here, there are attendant difficulties or inabilities in functioning. It is not so easy to conclude that the factors posing impediments are all clearly wrongs in the society. (Although, as an aside, far more should be: this society is far too intolerant of differences in social interaction, and far too unaccommodating of differences in sensory functioning.)

It is so easy to lump the difficulties and inabilities in functioning together with the inner gestalt, the way of being, and devalue the whole person as they are, difficulties and all, in the process.

There is an incredible amount of devaluation based on low societal expectations about what autistic people can accomplish. Autism itself is still considered shameful by far too many.

It is very much more difficult for most parents to lay to rest unmet expectations about neurologic typicality, and dreams based upon those expectations. Jim Sinclair's essay Don't Mourn For Us, which states the very real need to lay those expectations and dreams to rest in stark terms, evokes lots of hostile reaction.

Far too few have the clarity of vision to separate the disabilities that are secondary to autism in varying proportions and intensities, from the stuff about autism that is fundamental to who one is and how one apprehends the world.

Here, where clear vision about recognizing and isolating and mitigating the secondary disabilities is so critical, it is too easy to lump all of being autistic together, and consider not only the disabling factors, but the fundamental way of being, as "the enemy". Far too many of us do that.

Please, please try to make that distinction, and not lump it all together.

One of my friends from ANI (Autism Network International, a self-advocacy and social-networking organization of, for, and led by autistic people and their loved ones) said it best: Fight autistic disabilities, not autism.

I understood this to be what Temple Grandin meant when she told Oliver Sacks that if she could snap her fingers and cease to be autistic, she would choose not to do so, because she would no longer be herself anymore.

Yet she clearly recognizes, isolates, and works to mitigate the difficulties she encounters, putting her sharp engineering horse-sense to work to solve sensory problems and to engineer conscious, cognitive workarounds for areas of understanding of neurologically typical social interaction in which she lacks neurologically typical intuition.

My dreams for my son Jeremy, who is 4 1/2 and has a diagnosis of PDD, are that he may grow up to be as in tune with his life, his work, and his very being, as Temple is with hers. And that is my wish for my daughter Rachel, who is 6 1/2 and has no such autism-spectrum diagnosis, as well.

Having said that, I come to the path we have chosen with respect to intervention for Jeremy that seems to alienate the zealots on both sides of the cure/recovery/prevention debate from me.

Jeremy is in programs that use discrete-trial teaching methodology. We view discrete-trial teaching as a means for him to bootstrap the learning process. He has made remarkable progress in learning how to learn. The incremental cognitive steps and abundance of concrete instances with which to populate conceptual sets are exactly what his kind of mind can leverage best. He also loves the benign ego-trip of boisterous recognition that he's accomplished something when he gets stuff right :-) .

His kind of mind and his kind of ego and his kind of boisterous enthusiasm are exquisitely, fundamentally human -- as much so as other kinds of mind and ego and affect.

I have no intention to allow anyone to attempt to change those things about him. I do want him to learn how to understand and interact with and work together with other kinds of mind, other kinds of ego, other kinds of affect, and to do so while holding high the value of his own kinds, however small a minority they may be in. There is a vast difference.

The result is that he will probably never be "indistinguishable from his peers", or whatever it is that the folks who buy the whole nine yards of the Lovaas bandwagon set as the criterion for "recovery".

Does that mean he will not have succeeded to the best of his abilities?

Hardly.

I think he will be far better off than a kid who has the goal of indistinguishability from his peers set before him. He will not be afraid to be different, when his gut and his mind make him so; yet he will learn how to recognize what those differences are, I hope, and be equipped to make conscious choices about which of those differences he wants to construct cognitive workarounds for.

I get shit (sorry, but I need to use the technical term in the interests of precision :-) ) from the anti-Lovaas people because Jeremy is doing discrete-trial programs, and they cannot see that it is possible to leverage such programs where and when they truly help, truly serve as tools for navigation, without buying the whole nine yards of the cure/recovery mentality that is epidemic in the Lovaas community.

And I get shit from the pro-Lovaas people precisely because I do not buy the whole nine yards. I don't believe in cure; I don't believe in recovery; (can some of you hear John Lennon singing "I don't believe in Beatles" here? :-) ); I only believe in Jeremy, and us, his family and his teachers, and in what he can do to make sense of the world and a path for himself in it.

And as for prevention: I believe autism is such a subtle mix of neurological atypicalities, that truly preventing it at a genetic level would prevent not only the mix of disabilities that can arise from it, but also genius, humor, talent, and valuable different ways of thinking and feeling and making art and science that can also arise from those same neurological atypicalities.

Most of the autistic people I know are among the most intrinsically human of people I know. The species would be far, far poorer without people like them.

Let's do the genetic, neurobiological, neurochemical, and neurophysiological research into the etiology of autism in order to engineer new ways to mitigate the sensory difficulties, and understand and leverage the atypical cognitive and affective and learning styles, but let's not mess with the gene pool by using genetic markers to avoid having babies or to abort pregnancies.

(Let's do the research into non-idiopathic causes of disabling autistic symptomatology, so that they can be avoided; but that is an entirely different question.)

So I am for maximizing developmental progress, but I think viewing it in terms of "recovery" does it a disservice; and I am for mitigation of disability, but I think viewing it in terms of "cure" does it a disservice; and I am for research into etiology that is applied towards maximized developmental progress and mitigation of disability, but I think viewing it in terms of "prevention" does it a disservice.

And I truly do not understand why more people are not capable of laying down their ideological battle-axes and joining me in the middle ground.

My $.02, apparently in 1928 dollars, judging from the length. Sorry about that.

Phil Schwarz
pschwarz@ix.netcom.com

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