Sunday, July 6, 2008

Autistic Children Grow Up

Harold Doherty has written recently about one of the irrepressible aspects of his autism reality—namely that autistic children grow up—and I would like to take a moment to wholly concur with that observation.

Autistic children do indeed grow up. In the case of my son, I find him fast approaching a milestone I can only describe as filling me with a type of very real fear. You see, he is nearly 48 inches tall now, and around these parts that means he can soon ride on the biggest rollercoasters—accompanied by an adult, I am sorry to say. Up to this point, I have managed to control this rollercoaster riding behavior through the use of many carefully arranged discrete trials, dutifully noting all the height restriction signs around the amusement park and accurately pointing out the clear difference between the top of Brian’s head and the bottom of the delimiting line. But that clear difference is not so clear anymore, and besides, my rapidly aging arm can only take so many more tugs upon its fast lengthening sleeve, so I am afraid I must face up to the obvious fact—that inevitable day is about to arrive. Then up up up we must ruthlessly go, and if I dare to look I know I will see Brian there on the seat beside me—hands clasped, rubbing and flapping, his laughs much like a kind of madness, the shrieks a little too loud, his giggles far too inappropriate (well, how can they be described as anything but inappropriate when I myself have a death grip on the restraining bar and mouth formed into the shape of a giant O?)—and then down down down, rushing, twisting and bashing about, the perfect metaphor for those chaotic experiences we as parents of autistic children know all too well. And then the briefest interlude near the very end, the tiniest respite before the terror-inducing words are spoken once more—“I want to go again.”

But perhaps Mr. Doherty would rather I wax more serious on his chosen topic, for indeed, as he has rightly noted, autistic children do grow up. So let me speak of another reality my son will soon be facing, that of entering school—entering school, that is, if my wife and I can ever come to a decision about where that experience should best be had. On the one hand, the possibilities seem far too numerous—public school, private school, home school, special needs, Montessori—but on the other hand the choices seem not nearly adequate enough, for what educational setting can possibly meet our son’s many divergent needs? What school system is going to remain flexible enough to accept him pacing the halls when the urge so urgently strikes, and also allow him to drill deeply into a set of encyclopedias when a particular topic has caught his fancy? And how to avoid the bullies? And how to encourage the making of friends? Heck, how to trick him into eating a cafeteria lunch, considering how stark his diet currently is? The challenges are certainly going to be many. The potential problems will undoubtedly be troubling. The world is a daunting place, my wife and I well know it, and launching our son onto life’s expansive path fills us both with a kind of awe and dread. But then we recall how our young traveler is of the category autistic—and thus how his potential is endlessly surprising and creative—and then we relax and smile just a little, for really, how can we ask for anything more?

But I suspect that vision will remain much too short-sighted for Mr. Doherty’s taste, who having perceived that autistic children grow up, has contemplated the consequences all the way to their very end—all the way to the doors of institutions. Well, why not? We too have institutions hereabouts, some of them particularly well suited for handling the troubles of a child such as my own. After all, what else can I be expected to do with a son endlessly obsessed with ceiling fans, a son constantly fussing about with knobs and buttons and switches? Unless experts recommend otherwise and insist he be committed to a more specialized place of residence—such as M.I.T.—then I will have to make the call to Purdue, I think, it is there I will have him placed. (My wife, however, focused on the issues of Brian’s perfect pitch and rhythmic singing, suggests the wards of Juilliard would make a better home.) It is possible I am being much too pessimistic, of course—perhaps Brian will surprise us all and defy our most carefully crafted expectations, striving first to do some simple, honest work and only later discovering his more expanded calling (such as Ms. Dawson and Ms. Harp seem to have so ably done). What fills me with the greatest emotion, however—and here I think Mr. Doherty could hasten to agree—is thinking about what might happen if I were not there to help Brian make the most difficult decisions. What would happen if, God forbid, both I and my wife were irretrievably gone? What if Brian were somehow forced to rely upon his own unique perspective—along with whatever meager tools his parents had managed to instill? What if he had to decide for himself what indelible marks to cast upon his world? What if he had to go forth as an individual? Have I fully considered those possibilities, have I contemplated the consequences all the way to their very end?

Yes, Mr. Doherty, autistic children grow up—what an inspiring thought that is! What incredible terror, awe and joy!


Autism Reality NB said...

Mr Griswold

I do not wish to deprive you of the hope that your child will grow up to become as capable as Ms Dawson who was not even diagnosed with a PDD until she was a gainfully employed adult. But many do not.

That is simply reality. None of the writings of Dawson, Gernsbacher, Baggs,Ne'eman, Chew or Sinclair can change that reality. None of their writings helped find autistic adult Keith Kennedy when he was lost in the woods of Wisconsin. None of their writings changed the reality of life for the autistic woman in Long Island who was unable to communicate that she was repeatedly assaulted by staff until the assaults were caught on video cameras.

I wrote of actual families I have worked with in our legal system who dealt with the realities of beloved autistic children who hurt them as they grew older, bigger, stronger.

I am sorry if you find such real information discomforting.

I wish you and your child well.

Kev said...

"None of their writings helped find autistic adult Keith Kennedy when he was lost in the woods of Wisconsin. None of their writings changed the reality of life for the autistic woman in Long Island who was unable to communicate that she was repeatedly assaulted by staff until the assaults were caught on video cameras."

And guess what Harold? Neither did yours.

However, what their writings will hopefully bring about is the chance to see that autistic people - whether they be Amanda Baggs, Keith Kennedy, my child or yours - deserve respect. There is no more information more real than that. No more reality more important to achieve than that.

We write of 'actual families' as well you know. It might be very, very difficult for you to process but your reality in New Brunswik is simply that - your reality.

Bad things happen to good people Harold. The way to change them happening is to make sure that it doesn't occur to people to perpetrate them in the first place. The way to do that is engender a sense of respect and equality.

jypsy said...

"None of their writings helped find autistic adult Keith Kennedy when he was lost in the woods of Wisconsin."

Theoretically..... had he been lost on PEI it may well have been the efforts, writing, speaking, fundraising & organizing of my (autistic) son and I that helped First Responders and Search & Rescue find him. Exactly 2 years ago right now Alex was running across Prince Edward Island in an effort to raise the money to train Maritime First Responders and others to do just that (and to avoid the situation in the first place).

Alex and I can't write like those named can but we can do what we can do and we have done and continue to.

Bev said...

Thank you for writing this, Alan. And I appreciate very much the comment from Kev, addressing something I've been thinking about for a long time. That is, why is Mr. Doherty's experience more "real" than the experiences of others? Why does he feel the need to insult those he sneeringly calls the neurodiverse or the (quotation marked) autistics? I would never insult his son. I sincerely hope that his son does not become a victim of institutionalization or other abuse. I fail to see how advocating for a more tolerant society, one that includes autistic voices, could be so offensive to anyone.

Alan Griswold said...

Thanks to Kev, jypsy and Bev for the support. It's nice to see names here of people whose work I've admired for quite some time.