Monday, February 1, 2010

Gravity Pulls You In




Last summer, my friends Kyra Anderson and Vicki Forman asked me to write a foreword for the anthology of autism stories they's been working on for the past few years. I'm proud to tell you that they completed the project, and the book goes on sale next week. You can order a copy here:

Order Gravity on Amazon



And now I'll share the foreword, to give you an idea what's coming in the book. I hope you enjoy it.


Have you ever wondered what it would be like to raise a kid with special needs? I have. You’d think I’d know, since I was a kid with special needs myself. I have Asperger’s syndrome, a form of autism. The autism spectrum encompasses a wide range of conditions from total disability to mild eccentricity. I’m fortunate to be at the less-impaired end of the spectrum.
The one thing all of us have in common is some degree of social impairment. We may also have speech, coordination, learning, and health issues. Most of the kids who populate Gravity Pulls You In have some kind of autism.

I recognize myself in many of their stories. They bumble and struggle and fail, and I remember experiencing those very same things long ago. Then I read of their triumphs, and I remember my own small victories. Exceptional clarity of memory is fairly common among people on the spectrum.

With all the names I was called growing up, it’s no surprise I saw myself as a misfit child. With that self image, I naturally thought anyone like me must be a misfit, too. However, I know different now. Today I realize that the autistic condition is really the human condition. Our hopes, dreams, and feelings are exactly the same as anyone else’s. We just don’t show our feelings in the conventional way, and we don’t respond to other people’s signals as expected.

Yet inside, we are all the same.

It’s very frustrating how much of the world is oblivious to that simple truth. In fact, my own distress over that bit of ignorance is one of the things that drives me to be a writer, speaker, and advocate today.

I thought I could contribute a story from the special needs child’s perspective, but as I read what others had written I saw my own experience was fundamentally different. I am indeed a person with Asperger’s, and I have been this way all my life, but there is a very important distinction. When I was a child, I didn’t know I was autistic, and neither did anyone else. I was a just a regular kid with a lot of problems and very few friends. I was also a kid who did strange things. And I was a kid who got into a lot of trouble.

You might also think I’d understand the special needs perspective because I raised a kid with special needs thirty-some years later. My son, who is now 19, also has Asperger’s. However, I didn’t know he was Aspergian until he was seventeen, and by then, the kid-raising was mostly done.

My special needs parent experience was limited to watching Cubby get tested, listening to inconclusive results, and arguing with an uncooperative school system. Eventually, I gave up. “He’s just not applying himself,” they said. That was the same line they fed me, thirty-some years earlier, and I gave up then too. At one level I knew they were wrong, but I did not know exactly how to counter them. Naively, I believed they had my son’s best interests at heart. I don’t know why I would have thought that, because I knew they were not on my side as a kid, but there you have it. Maybe it’s the eternal optimist in me. Anyway, I now know better. If I get a third chance, with an Aspergian grandson, I will not send him to that school system. I will make better choices.

Faced with failure and an endless hassle, I dropped out of high school, and so did Cubby. He’s in college now, but he’s had a harder time that he might have, had the school be a little smarter or a little more cooperative, or if I’d pushed them a lot harder. But it’s not my nature to whine about such things. Cubby is in school and working two jobs, and he’s making his way. That’s all any of us can hope for, short of rigging a lottery machine and getting away with it.

I guess my experiences show that it was possible to raise a special needs kid in ignorance in the sixties, and it’s still possible to do it today. But can parents do a better job with the benefit of additional knowledge? My sense is, they can. That’s why books like this exist. I wish I’d read some myself, long ago.

I also wish someone had told me about Asperger’s when I was a teenager. I knew I had problems, and in the absence of an explanation like autism, I assumed I was just defective. The corrosive aftereffects of that childhood assumption followed me right into middle age, when I finally received a proper diagnosis. Much suffering could have been avoided if I’d known at fifteen.

That’s one good side to early diagnosis. Another is the benefit of early intervention. Countless medical studies have shown that kids who receive early diagnosis followed by aggressive therapy do better than kids like me, who grew up in a free-range state.

So those are two great reasons to raise kids in a state of awareness and focus. Every parent in this book does that. If I could go back in time and raise myself again, or start over with my son, I’d do the same. What parent wouldn’t?

So what’s the downside? I can sum it up in two words: Reduced expectations. There is a real risk that a diagnosis will place limits on a kid’s development because people will forevermore say or thing, He has autism, so he can’t do that . . . When I grew up, no one had any knowledge of Asperger’s syndrome. That meant I was held to the same standards as every other child on the street. I had to learn to get along, attend classes, and get passing grades just like everyone else. At least, that was the idea. I followed that path till tenth grade, and then I dropped out and went my own way.

There was absolutely nothing to hold me back except myself. In fact, I often had more incentive to make my own way because I was always on the edge of starvation and ruin. In my early adult years I lived as an outlaw, working with traveling music groups, riding with bikers, and even living in the woods. I did those things because I failed in my efforts to follow the conventional path. I dropped out of school because I could not learn in the manner the teachers taught. I could not attend college because I lacked a high school diploma. And I couldn’t get a good job because I wasn’t a college graduate.

But I didn’t let that stop me. I made my own path and found some measure of success. However, the fact that I was an outlaw and an outsider always weighed heavily on me. I was always gazing in the windows of legitimate life, wondering what it might be like inside. As successful as I became, that remained the hard truth.

That’s where things stood when I finally got The Diagnosis.

By time Asperger’s officially entered my life, I was forty years old. I had married and fathered a child. I had designed video games at Milton Bradley, directed research at Simplex, and then left the corporate life to found J E Robison Service Co, a specialty automobile business. Chicopee Savings Bank had named me to their board, and I was involved in my community. By most standards, I had a full life. If you asked me who I was, I’d have defined myself by those achievements.

If you asked for more, I might have fallen back on the basics. I was a white male, six foot three, two hundred twenty five pounds. Born in Athens, Georgia. If you pressed me some more, I’d volunteer that I was middle class, and generally conservative. That was how I’d describe myself.

Suddenly, with the receipt of The Diagnosis, none of that mattered. The whole concept of “people like me,” took on a whole new meaning. All those former adjectives were out the window; rendered meaningless. From D-Day forward, I was a guy with Asperger’s. Everything else was rendered secondary to that new facet of me.

The doctors are quick to tell you autism isn’t lethal. Yet it’s still one of the big scary words in medicine, like AIDS or cancer or Alzheimer’s. As such, it’s no surprise it came to dominate my thinking. I thought of what I’d previously known – or thought I’d known about autism. I thought of Tommy, the kid on the St. Elsewhere television show. I thought of Rain Man. I thought of all the silent lost people on the grounds of the Belchertown State School. Were they autistic, too?

Alzheimer’s doesn’t kill you, but it gradually takes away your mind. Would autism do that to me? Luckily, my reading abilities were still good. Nothing had started failing. Yet. I set out to learn as much as I could, while I could still read and speak.

I was in a state of extreme anxiety at first. My new diagnosis left me feeling as if I had just caught a new and deadly disease. I soon learned that wasn’t the case. My midlife diagnosis was attributable to new medical knowledge, not my own deterioration. I was relieved to learn that I am actually getting slowly and steadily “better” through a lifelong process of learned adaptation and acquired wisdom.

So many things suddenly made sense. For the first time, I understood how I could be smart and yet get straight Fs in school. I saw how Asperger’s had made school hard for me, and I’d done some pretty unusual stuff after dropping out. New insight brought those memories into focus, and I saw how the differences in my brain had shaped the course of my life in countless subtle ways. Yet I also realized the success I enjoyed as an adult was real, and it wasn’t going away. In fact, as I moved forward with new knowledge and confidence, I saw my life was getting better every day.

Asperger’s is not a disease. It’s a way of being that comes from non-standard wiring in the brain. The latest science suggests we’re born different, or else we become Aspergian early in infancy. That means Aspergian life is the only life we’ve ever known; we don’t get sick and get Asperger’s as teenagers. We will always be aliens when we gaze at people who don’t have Asperger’s, and they will always struggle to understand our thinking.

How does that affect the parents? I never really considered that question until quite recently. This book contains many stories that describe the joy, pain, confusion, frustration, and triumph of raising a kid like me. I had no idea. It also contains stories of resolve and determination that surprise even me. Some of these people are what you might call High Performance Parents.

One thing strikes me in almost every story. Autism has taken over the lives of these people, perhaps to a greater degree than it took over my own life. I talk about life as an autistic outsider, gazing in at the world of normal people. Autism has made these parents outsiders, gazing into the unreadable minds of their own children. What a strange reversal.

When you’re a kid on the spectrum, autism is all you know; all you ever knew. There’s frustration at things we can’t do, and even rage. But there’s no sense of loss, because we never possessed what autism is said to have “taken away” from us. We start with a certain set of abilities, and we build on them. Sure, we may have less ability in some areas than other kids, and it can hurt to realize that, but we make the most of what we have. What else can we do?

The situation for aware parents is very different. They see and imagine all manner of things their disabled kids (us) are lacking, and they suffer terribly for us. At least, that’s the impression I get from talking to parents today. Was my own mother that way? I really don’t know. Oblivion to others is, after all, an Asperger trait. I know I wasn’t that way raising Cubby. In that sense, ignorance is indeed bliss.

But does this awareness, focus, and worry produce a better kid? Or does it just produce a more stressed parent? I really don’t know. That is one of the great mysteries of kid-raising. Any of us – if aware – would do all the things parents in this book do. And the evidence in favor of early and aggressive intervention is strong. But it’s a hard road, not matter how you do it.

You can find Kyra online at www.thismom.com Vicki is at http://www.vickiforman.com/

14 comments:

kyra said...

well, look at you!!! thank you !!! you're amazing, my friend!!!

this week is lunch week for sure. i'm off to nyc today and then tomorrow is fluffy's 9th birthday (!!!) so what about thursday? hmm??

Laura DeAngelo said...

Wow, is all I can say. What an amazing piece of writing, John. You have put to paper my own thoughts and perspectives on parenting children with autism in a way that is much more eloquent than I could ever have done. I am so looking forward to reading the book! Congratulations Kyra and Amy!

Sardine Mama said...

While I know it isn't for everyone, homeschooling our 12-year-old son has worked very well for us. He has a lot of friends (almost all of them have issues they're dealing with...OCD, Aspergers, Tourette's, etc) and he met all of them through homeschooling. He's been supported his entire life, and until recently, had never been made fun of. And his reation to the cruelty when it finally came? It was just, "Wow. Those girls are mean." And that was it. It wasn't internalized at all - he hasn't had a lifetime of teasing seep into his own self-appraisal. He's got a lot of self-confidence and that's going to carry him a very long way. We also haven't had to "work" with the school system. We haven't had to plead with anybody to understand him - or make classroom adjustments for him. Last year he competed on an Odyssey of the Mind team and they won the highest honor for creativity - after competing against public school kids. Creativity! For my Asperger's kid! So his only experience with "school" is that he competed well in a competition against school kids. He's going at his own pace in every subject....looking forward to being a biologist someday (he likes to classify things). I can see that things would be very different for him if we were battling the schools all these years instead of nurturing our son in a supportive social atmosphere. Thanks for everything you do - we are huge fans!

Susan P said...

My daughter could be called a High Performance parent. Her blog about raising my grandson, who has autism, brings me laughter and tears. Her grandmother hopes to see her writings in a book some day. Thank you for sharing.
http://mamabegood.blogspot.com/

Rach said...

Thank you, John. My son is amazing and complex. His psychologist believes he has Asperger's. His pediatrician does not. There's hope in both beliefs. Your book is truly amazing, and gave me such hope for my son's future.

jess wilson said...

mine's already ordered and i'm breathlessly awaiting it's arrival! thanks for the sneak peek at the fabulous foreword!!

Carol Anderson said...

Thank you for helping me to "see" and try to understand my 2 autistic (1 high-functioning, 1 Aspergian) children better. This new book is on my list to get. I have sailed thru your book (Look me in the Eye) which I feel is a great tool for school teachers to use to help them understand how an autistic child "is" in their classroom. I refer to it when working on my Masters in Special Education which should be complete in a year & believe that your book should be required reading for all teachers either before licensing or as a continuing education credit. Keep on informing us "regular" people so we can be better teachers, parents, etc. to all people with disabilities.

Leightongirl said...

Thank you, John, for being so kind and supportive and writing such a tremendous introduction.

Jennie said...

What a wonderful post and I can't wait to read the book. My son is only 2 1/2, but was diagnosed with autism this year. We are thankful for all that we can do to help him (ABA, etc.) but what I most want as a parent is to help bring out the best in him and let his full potential shine.

Elizabeth Channel said...

My, my. My son just got his diagnosis--this time not a possible diagnosis or a hint of this or a brush of that as we have had in the past--but a definitive diagnosis of Aspergers. So naturally I am reading voraciously and I find your perspective.

Keep writing, and thank you.

Tim Hardy said...

John, thank you for giving a voice to Aspergers and Autism that is rational. It has changed my life and I really look forward to getting this one. Anyone know if there will be an audiobook?

John Elder Robison said...

Tim, I don't know of any audio book plans but you might ask Kyra or Vicki

Justthisguy said...

As the Scots say, "Dinna fash y'self"

I mean, you're the guy who gave us Exploding Rocket Guitars!

If I were King, that alone would get you about 12 years' sentence worth of free pardon for any non-violent crime, and even some slightly violent ones.

Glynnis said...

Coming from a different perspective, my husband was diagnosed with AS about a year and a half ago at age 23. I always recognized that there was something unique about him and when we found out, it was quite enlightening.

He had a difficult childhood and felt that Look Me In the Eye had captured the essence of the trials that he endured growing up. The phrase he heard often was "How can you be so smart and so stupid all at once?".

I think that if his parents had known when he was younger, much heartache could have been avoided. Still, all the experiences he's had has made him the amazing man he is today, and I wouldn't have it any other way.

We are working to smooth out some of the aberrations that AS can create, but since diagnosis, he has gained quite a bit of ground. Forecast: Sunny.