An Adult with Autism Makes a Case for Moderation in the Autism Wars

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Autism Blog

By Jo Rudy, About.com Guide to Autism

An Adult with Autism Makes a Case for Moderation in the Autism Wars

Saturday November 22, 2008

Rilea is an adult with autism. He recently posted an eloquent essay as a comment on an older blog post - and it seemed to me that his voice shouldn't be buried in the archives of the web. Mr. Rilea shares with me that he is a resident of Nevada, who graduated from the University of Nevada-Las Vegas in 2003 with a BA in History. To place this essay in context, my blog post was a reflection on the question of whether social acceptance should be the most important goal for a child with autism (or, really, for anyone).

Here's Rilea's response:

I am a 44 year-old high-functioning autistic man, who is, while having been diagnosed at age 11, relatively new to the on-line debate between the pro-cure and neuro-diversity factions.

From what I've seen thus far, I can understand, albeit from the kid's end, what my mother went through, and what the parents of autistics, Asperger's Syndrome, and others on the spectrum, just trying to GET anything in the way of services for their children, teen-agers, and yes, adult children.

My mother tried doing this in the Reno-Sparks Nevada area in the 1970's and '80's, and there was precious little to be found for me.

In comparison with what that situation was like then, at first glance, a vastly improved situation depending on which part of the US, or the planet, you're in.

Raising an autistic or other person on the spectrum is long, hard, exhausting and often frustrating work.

So's being an autistic person, or who has one of the cousin diagnoses.

Not for the same reasons, not at all.

But, it is frustrating, nonetheless.

Haven't yet plunged into the neuro-diversity movement's sites and literature yet, but have an acquaintance of mine who's the mother of an autistic son who is a believer in it.

From what little I've managed to absorb of the credo thus far, my take on it is this; it's not that autistic and other spectrum people should be simply left alone, because even the highest functioning of us is going to be in need at least some further education and guidance than most so-called neuro-typicals.

That would be foolish and cruel, especially in the cases of the lower-functioning autistics and others who need long-term, if not life-long, treatment and care.

At the same time, there also needs to be a greater understanding that those of us who are higher-functioning also need to be educated, mentored and trained to deal with being in the world, yet not of it.

That means guidance, yes, but it also means having the simple good manners and common decency to listen to us, instead of just talking at us.

To any human being, including disabled people of all conditions and degrees, whether verbal or non-verbal, talking with someone who is non-disabled, rather than being talked AT, is an important part of being treated with even a modicum of respect and good manners.

One of the reasons why some disabled activists, whether autistic or not, are so frustrated and angry, is because of the still, somewhat more subtle than in the past but still present, attitude of "Just do what Mommy-Daddy- Mr. or Ms. Nice Case Worker tells you to do, and keep your mouth shut."

It is the past use of disabled people, especially children, by groups like the MDA to raise money, by pulling the old show-biz, schmaltz-dreck( sentimental garbage, in Yiddish)tactic of "Look at the poor, poor, crippled kid!!! See how hard his life is!!! So, send us some money so we can cure him!!!", that is infuriating to me,and, from what little I've read and heard about fund-raising strategies and tactics by groups like Autism Speaks and Generation Rescue, some of that sort of nonsense still goes on.

Such strategies infantilise teen-agers and adults with these conditions, and no-one, no-one, with any amount of spirit in them can nor should stand for this long.

Add on to that the recent comments by Savage and Dennis Leary about people with autism and their families, and I think that one can see why some people in the neuro-diversity movement, as well as many parents, including those on the pro-cure side of the debate, are upset and angry, albeit for different reasons.

Any parent of a special needs child, teenager or adult who has ever had to deal with an arrogant, condescending professional, whether doctor, social worker, or any other sort, has been frustrated and infuriated by such cavalier treatment of themselves, their opinions and their children and their children's needs.

Quite understandably so, in my opinion.

But, the same kind of arrogance and disrespect sounds no better coming out of the mouth of a parent, than it does from a professional, whether doctor, social worker, or, in Messrs. Savage and Leary's cases, "professional liars" to use a small part of an old Elvis Costello lyric line.

Those of us on the spectrum, even if a cure or cures are ever found, need to be listened to, and understood, just as much as parents and siblings of those afflicted do.

It also needs to be understood that, while we are, like neuro-typicals or other disabled people, human beings, we are not entirely the same as you are, and, even with a cure or cures, will never see the world in the same way as others do.

One mayn't like it at all, but that fact remains.

Likewise, those in the neuro-diversity movement need to understand that neuro-typicals, like able-bodieds in general, don't see the world from the same reference points, either, and never will, especially if the various partisans in this debate keep trying to score points by rhetorically bashing each other's skulls in.

There must be mutual respect and understanding, but not necessarily agreement, between the various sides in this debate here, or nothing of any real benefit for those on the spectrum and their families will be done.

Until the precise causes of autism are found, and I have no scientific training, so please take this for what it's worth, any talk of a cure or cures for autism is mainly guesswork at best and quackery at worst.

In the meantime, the biggest pushes, as far as I am concerned, need to be in getting the best possible treatments and other services available to as many of those on the spectrum and their families as possible.

Until a cure or cures are found, there are a lot of people out there, Yours Truly included, who have these conditions,in varying degrees, and who have to live with them.

Arguing about causes of autism, and whether or not there is only one form of being human (What is this??? An episode of "Highlander", in which there can be "only one???"), as opposed to there possibly being others (We are all human, when it comes right down to it) only takes away time and energy from the tasks of getting the best possible treatments and other resources to those people on the spectrum and their families, and finding out the precise causes of autism, so there can be better, more effective treatments and cures available to future generations.

Those matter most; everything else is just so much philosophical debate and speculation, and doesn't, to use an old saying, feed the bulldog, much less get anything substantial done.

If I am not able to convince you, and the chances are that at least some of you reading this won't be, I would hope that what I've written here will be at least some food for thought, and, I hope, constructive action.

We can't do anything about these problems, if we are constantly at each other's throats, except to cause more bad feeling amongst ourselves and get nothing of any value done.

Point-scoring's for basketball and football, and doesn't work in real life. Thanks, !

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