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Published in Print: October 29, 2003, as The Autistic Kid Who Has Everything —And It's Still Not Enough

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The Autistic Kid Who Has Everything —And It's Still Not Enough

The education of autistic children is certainly a task worthy of Sisyphus.

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The education of autistic children is certainly a task worthy of Sisyphus.

My oldest child is one of "those" kids: a special-needs student, incredibly expensive to educate; so challenging that our school system sends him out of district to a private special education program. Oh, I know that means I've got it good. That doesn't mean I'm happy.

The education of autistic children is certainly a task worthy of Sisyphus: The more resources you put into educating the child, the more you see how far there is to go. And although parents feel compelled to push their children to their fullest potential, this is sometimes not possible, despite even the best- intentioned school system. I should know. I have been on both sides of the school system fence, as a parent and as a school board member. And I am still learning to cope with the frustration of the imperfect nature of education today and the autistic student.

At 3, my son had a diagnosis of autism before it was fashionable, before there were a dozen different ways of saying "autistic"; before autism grew to epidemic proportions. He arrived on the scene at a time when our school system—and most of the country's—were unprepared for educating children like him, yet required to do so under federal law. Fortunately, I live in a town that puts a high premium on education, and is not shy about funding it. My overall experience, when dealing with my child's academic programs, has been with compassionate, knowledgeable, and well-meaning educators.

Yet, in 11 years, my son has had six different school placements, seven if you count the two months he was sent home, without a program. Because of the changing nature of his needs and abilities, he has been bounced around as much as a military kid, without the benefit of understanding why. He has been part of inclusion experiments; oh how these inclusive public school classrooms tempted us with their exciting curricula, the promise of typical peer modeling, the superb regular education staff! But the inclusion programs we have known were, more often than not, thrown together at the last minute, dependent on aides with potentially little knowledge of autism, and were bound to fail. We've also tried other kinds of programs, the substantially separate classrooms within public schools, in an effort to hang on to some aspect of typical schooling. But there my son was integrated only marginally, leaving us to wonder what good it was doing him. And finally, we have had him bused to private programs designed solely for the autistic, with no hope of peer modeling. We change his programs because we often become deeply dissatisfied with them and feel he needs to have more, to be where he will finally be understood and will fulfill his potential.

But there has never been a program that is right for my child. I don't mean "right" in the way some people think, that the child earns only C's when he could be earning A's. No, I mean that certain programs he has been in have allowed him to escalate out of control to the point of hurting staff members and other children; or have allowed him to languish, unable to pull him out of his own world, so that he has lost perhaps years of potential progress. Consistency and a dependable structure to his days mean the difference between his being able to think, and screaming, pinching, and attacking people. This is a child who becomes angry when his bus driver pulls up with a different- colored van.

His volatility earned him the label of "dangerous," during the harrowing year when my son was expelled from his school and placed at home until a more suitable placement opened up. No one seemed to know how to help him, even in my highly esteemed town, and in educationally advanced Massachusetts. While trying my best to educate him myself those days, I often gnashed my teeth over how many children like him went through this because of the lack of good autism programs; how many other parents were as strung out as I was with having to be family, therapists, and school programs all in one.

There has never been a program that's right for my child.

Happily, in the last three years we have found our haven: a private school program he has not had to leave. There, he has experienced stability, and therefore also tremendous growth. His aggressive behavior has just about disappeared. He is reading only a few years from grade level, retaining some information, becoming adept at the use of computers, and is beginning to learn some prevocational skills. But something even more miraculous is his social development. This summer, we have gone together as a family to the movies twice without incident. His little cousin taught him how to use a skim board at the beach. He played a small part in his brother's home movie. And he had his bar mitzvah, in front of 60 people. At the age of almost 14, he has experienced no less than a social awakening. And I want to capitalize on it. But it's like being all dressed up with no place to go. He is, after all, developmentally delayed and very unpredictable. He plays like a 4-year-old, but with the strength and mood swings of a teenager.

Where can a person like this develop socially, other than with accepting family members? Do I try to bring him back to our school system, for inclusion in the—gasp—high school? Would our staff understand him and his complexities? Or should I merely try to supplement his current school day with extracurricular activities?

This, like everything else in autism parenting, is no easy task. If I take him to the organizations that "welcome people with disabilities," will they truly welcome him—even after he pinches someone? Will they require me to hire a one- to-one aide, on top of the cost of joining? Even the places that are intended specifically for special-needs people don't necessarily understand the thorny problems of autism. I have been called in to come get him from those programs more times than I care to count.

My special-needs community urges me to do something. I should get more social activities put into his educational plan. I should make the school do inclusion with the typical kids in that community. I should get my town to start up a program for him at our high school. No rest for the weary. Nor for my town. In the last decade, the increase in autistic students has caused the town to create many more programs so that the younger autistic children are no longer sent out of district as my son was. There are two special education task forces in my town, and I am a member of both of them. One of the biggest questions on everyone's mind is: What are we doing for the burgeoning population of autistic kids? Music to my ears. My town, like so many across the country, is now planning for this challenging group of kids. I understand firsthand what school districts spend to educate kids like mine, and the sweaty juggling of funds that goes on to make it all happen.

My son, already doomed to be fairly isolated because of his autism, is doubly doomed by a society that is unprepared for him.

And it's still not enough. For it's a little too late for kids like mine, who are simply not ready for prime time because they have never really been given a fair shot at it. They're too old, set in their ways, noncompliant. They're no longer cute, early-intervention types. They are a bit too challenging for typical public school classrooms or well-intentioned community groups. There is simply too little understanding of these children. And so, off they go to the expensive private schools, with $50,000 tuition plus transportation, because there is no other place for them—and then they may never fulfill anything near their potential or become socialized. My son, already doomed to be fairly isolated because of his autism, is doubly doomed by a society that is unprepared for him. The high-priced autistic kid who has everything—and it's still not enough.

What's a tired old mom to do? How I'd love to shrug and say, "Well, that's that, I guess." But it's my son's future at stake, and what he learns now could make all the difference between a full school experience and a paltry one. Even more important, what happens now will mean the difference between an independent life and a life spent in the care of others. If I push this school, as I pushed all the others, is it possible that they could figure out a way to tap in to his new social growth and bring him more into the world? If I tweak his educational plan just a little bit, stretch his teachers, without endangering his placement, will he finally get the school program he deserves? Am I up to the task? Are they?

I guess it's time to set up another IEP meeting with his school ...

Susan Senator is a freelance writer and a school board member in Brookline, Mass.

Vol. 23, Issue 9, Page 33

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