A Future Spins From an Uncertain Past

    In a Different Key: The Story of Autism (John Donvan and Caren Zucker)

different-key-shadow-3d1(http://inadifferentkey.com/)

What IS autism anyway???

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It never once occurred to me that Jim’s autism might have been caused by a vaccine.

He was a healthy, smiling, beautiful baby. His differences were noticeable as he grew into toddlerhood and beyond. He had all-consuming interests that did not include socializing with his peers. He slept poorly. He had digestion issues. He was extremely particular about his food. He wanted to watch the same videos over and over and over again. He read early, and then he wanted to read the same book ALL the time.

Jim wasn’t diagnosed with Asperger’s (which, failing as a diagnosis, then became PDD-NOS) until he was 16, but in the years leading up to that he struggled with school and with routine and with obsessive behaviors. The diagnosis was in many ways a relief; it gave his struggles a name and a rationale. It gave him–and us– a way forward, through working with some very good docs and counselors, through reading as much as we could find on the subject, through learning to reach out.

And through a great deal of trial and error.

In all that reading, of course I read about the vaccine theory. I could see both its logical and its rational appeal.  The happy smiling baby grew into a distressed uncommunicative child. The change and the shot were pretty closely timed.

We’re parents; we’re protectors. We look around and we want to know why. We want to know who’s responsible–what dragon did this to my child? Then we want to gather up our swords and shields and go out and slay that damned dragon.

But the vaccine wasn’t our dragon, clearly, because I looked around my family and saw glimmers and echoes of autism. Oh, maybe not full-blown, but that peculiar ability to concentrate on one thing for unending periods of time, to the exclusion of everything else–that was all over the place.

And I was always fascinated by other kids’ mothers, who went out to lunch, got their hair done regularly, or enjoyed shopping with “the girls.” My mother seemed to have little need for friends. She stayed home with her books. She plunged into interests—upholstery, cake decorating, knitting—passionately. After a while, one interest would run its course. There would be a lull, and then a new passion would come along to fill its place.

But she was happy, for the most part; my parents were devoted to each other, and one’s gifts augmented the other’s needs. So my mom was quirky and prickly and different. So what?

The same food sensitivities and sleep issues and brilliance that couldn’t translate into academic success twined through the lives of many of my kin. In Jim, these issues and challenges seem to settle and entrench. Where there were fragments and hints in others, Jim’s characteristics were loud and present and often interfered with his ability to cope.

So, even when he was young and undiagnosed and struggling, I knew where his challenges ‘came from.’ When he got older, and his differences acquired a name, we began the slow and sometimes frustrating challenge of helping him cope with those differences, with that diagnosis, in a world that didn’t often make sense to him.

We had a name for the condition; we had professionals who could offer help. We had services. Jim qualified for help through the local mental health agencies; autism IS in the DSM. But he also qualified for some services through the local development disabilities board. Autism falls under that classification, too.

I realized, really, how little I knew about autism, beyond the impact it has on Jim’s life. I decided it was time to start reading. I read a lot of memoir and biography–Tim Page and John Elder Robison and Born on a Blue Day. I read Oliver Sacks and Temple Grandin and thought what it would be like to feel like an alien in your birthplace. The theme, if there was a theme, in these books was, “Find your niche.” And Jim, with his passion for movies and his affinity for computers and video games and his love of words and bewilderment about numbers, tried hard to do just that; these successful folks with the same sort of mindset were beacons for him and for us.

But we still had questions about the nature of the beast.  And then two fat books appeared on shelves in the last year: Neurotribes by Steve Silberman and In a Different Key by John Donvan and Caren Zucker. I read Neurotribes last spring, and then, on a rainy day at Barnes and Noble,  I found the other book.

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I just finished In a Different Key, which starts and ends with Donald Triplett. In the first chapter, the authors call him “Autism’s first child.” Donald was an odd little boy who defined the people he knew in terms of colors. He was born in 1933 in Forest, Mississippi, and he was one of the first United States children to be diagnosed, by Dr. Leo Kanner, with autism.

A Different Key uses Donald Triplett’s birth as a leaping off point for a thorough and readable and fast-paced exploration of autism. It starts with a scientific community waking to the phenomenon; it travels through a time, when parents, especially mothers, were blamed for inflicting the condition on their children. Donvan and Zucker expose poseurs and greedy practitioners and cruelty and competitiveness. They document the drive and love of families determined to find answers and make a difference. They take us through the furor caused by the vaccine theory–a theory many smart and savvy people adhere to today.

We meet the people who brought autism to public awareness. we meet people who used the diagnosis as a springboard for their own agenda’s launch.

The authors bring us to today, when neurodiversity is a new movement, when high-functioning and gifted people with autism diagnoses are demanding recognition. These folks see autism as difference, not defect. They are offended by those who continue to insist that it’s caused by a vaccine, a fever, or a chemical. They don’t want a ‘cure.’ They want acceptance of people whose brains just work differently than the majority’s.

So what IS autism? Is it an illness? It certainly seems to drag mental illness along with it. Many, if not most, people with autism battle major depressive order. Many are obsessive compulsive.

I wonder, though, if those ancillary illnesses are biological or environmental– if they’re not the result of individuals living in societies that seem strange and incomprehensible. If I had to live that way, I’d probably be depressed, too, and I’d probably rely on repeated routines to cope.

And certainly, many people with autism also struggle with developmental issues. Those that are mute clearly need to learn ways of communication. Some concepts seem particularly tough to grasp; the abstract quality of numbers is an insurmountable wall for Jim, whose vast vocabulary surely exceeds my own.

There’s a huge part of me that just wants someone–some expert–to tell me just exactly what it is we’re dealing with here. Give it to me straight, the good and the bad, and don’t make us reinvent the wheel at every stage of my son’s challenging, interesting life.

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Jim is 26 now. He finished high school on schedule, with no learning accommodations, but in a welcoming atmosphere where he could eat his lunch in a quiet room and leave the choir concert when he was overcome by panic. And then he struggled, through courses at two community colleges and job placements and career coaches and government agencies that didn’t quite have the right answers. There is not a clear road map, once high school is done, for autistic adults.

So many are struggling at home, unemployed, with few friends or connections, playing video games, surfing the Net. Some are depressed and lonely.

But there are flares of hope, too–programs like Bittersweet Farms in Ohio that provide day services, employment, and housing for the autistic adults they serve. Colleges begin to offer programs specific to the diagnosis. A day will come when autism isn’t lumped with developmental delays (unless appropriate) or with recovery services (unless appropriate.) Perhaps the gift of being here, now, is that we–adult people with autism, and those that love and care for them–can have a real hand in shaping a future that contains dignity, meaning, and hope.

Jim has recently launched a small business. He calls it ‘Transcribing History.’ He couldn’t find a job that allowed him to use his excellent verbal and computer skills, so he created one. He takes the recipes that people have accumulated in shoe boxes and folders, things ripped out of magazines or written in a great aunt’s shivery hand, and he scans them into his computer. Then he types them up. He organizes them and puts them on a flash drive. He creates cookbooks with tables of contents and categorized indexes. His work is organized, precise, and complete.

Jim’s quest to develop this enterprise has led him to supportive job coaches through the local DD board and this county’s Small Business and Development Bureau. He’s clarified his preferred communication style (email), and he is learning the ins and outs of customer service. His days have a purpose and a routine.  It was a long time coming, but his path, though pitted, has always been forward.

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And it is good to know how we got to where we are today. If you are on the spectrum, or if you love and care for someone who is, In a Different Key is a compelling book that you might want to read. It gave me background; it deepened my incomplete understanding.

It didn’t necessarily, however, provide a path for the future, but we–this generation of autistic adults and the people who love them–are, maybe, challenged to begin to do that for the next. We have the frightening freedom to create possibilities. We’ll probably try things that don’t work. We’ll probably struggle and sometimes fail. But I believe there’s hope and growth and new understanding brewing. I believe that people like Jim will pave some walkways that others, in years to come, may turn into bustling roads.

It’s an uncertain time for adults with high-functioning autism,  uncertain, uncharted, and a little bit scary. But it’s exciting, too, to think that they are limited only by their own creativity and vast, deep skills, and the intensity of help they get from their supporters. That’s a heady, portentous brew.

Donald Triplett, by the way, grew into a very successful adulthood, although not one that a neurotypical person might have chosen. He went to college and he came home to a job in the family bank, where he, in an endearing, quirky way, often referred to his customers by their account numbers instead of their names. He developed a passion for golf, which he played in an odd way and with a unique form. He played, always, by himself.

He lived by himself, too, after his parents’ deaths, lived in the old family home. Neighbors and coworkers took him in hand. They made sure he had new clothes when the clothes he wore grew old and ratty. They checked on him and made sure he was all right. The bank manager told his staff that Donald, even after he retired, was always welcome to come and perch.

When Donald turned 80, the entire town turned out for his celebration. The first kid with autism had developed a strange and unique life, one in which he was true to his own passions and ways of being. But it was quite, definitely, a way of life that worked.
With no real history or information about his condition, Don and his family had found their way, creating a future for their quirky but lovable boy.

Creating the future. And we, because of people like the Tripletts and books like Donvan and Zucker’s, have the chance to be informed by the past. Reading In a Different Key is a very worthwhile part of the process.

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