When my experience with autism began in 1964, with the sudden inclusion of an eight-year-old autistic stepson in my life, autism was barely acknowledged in professional (medical and psychiatric) circles. It hadn’t been defined, and no one had a clue about what to do about it. Autism and all it meant to the “patient,” caretakers, and members of the research and treatment communities were like that early computer and the people who used it. Treatment was awkward, rudimentary, simple. The seeds of greater things to come resided only as dreams in the hearts of caretakers and professionals.
There were no special education classes (in public or private schools), devoted to children with needs other than those with physical handicaps and some mental disabilities. Children with emotional problems (The most likely cause of autism, at that time, was believed to be life with a cold, punitive mother, hence the child’s withdrawal from society in every way.), those children had no place to go, except a very few private “schools” that were enormously expensive; even their personnel had no real idea about how to help the clients.
Teachers had virtually no education or training in how to help autistic children. A few professionals offered comments, but rarely advice, to parents about how to help their children. The few who did advise were pessimistic, with no concrete directions or suggestions. Some of those professionals merely said, “Put your child in an institution and forget about them.”
We had no tools at all. No workbooks, flash cards, storybooks written and published with members of the autistic community in mind. No Kindles, tablets, IPods, special computers to enable communication for those who can neither talk nor write. No special toys, stuffed animals, games. No paradigms for techniques or programs that worked for some autistic children (and not for others).
Even so, Andy and I are proof that success is possible. He is no longer autistic. He’s a sixty-three year old retiree from a full time job, who lives independently, drives his own car, and is a vital and contributing member of his community. Did I say he has an AA in Commercial Art? Did I say that recently he told me when he collects Social Security he will be able to send me money to augment my Social Security Benefit that is less than his state pension?
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For twelve years, I flew by the seat of my pants. Only rarely did I think concretely about what to do. When I did so, when I made a plan or started a practical method, I usually based it on what would work with me. My own history included sensations, behaviors, activities not unlike those experienced by autistic people. If nothing else, I had empathy, and I could apply practical techniques that had worked for me. Most of the way, however, I simply did what came naturally, what came next, without a thought for measureable efficacy or effect.
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I sent a sample from the first draft of our book to Temple Grandin, doyen of advocacy for autistic people like herself. She responded almost instantaneously. She said,
“This book is terrible!”
“Why?” I asked.
“You must tell people what worked. All this other stuff, about early history and schools and such, is garbage. Take it out. People want to know what worked.”
I’ve reorganized the book, and included sections about “What Worked” in most chapters. But I didn’t leave out the “garbage.” I didn’t leave it out because of what I confirmed for myself as I wrote those “What Worked” segments.
Yes, Holding Therapy works for some autistic people, some of the time, but not for all autistic people all the time. Behavior Modification is the same way. Colorful flash cards work, if and when they are carefully designed to meet the specific needs of the autistic person’s situation and abilities. Appropriately selected and used technical wonders are wonders for many autistic people.
The single most important thing I could say, in every one of those “What Worked” segments, is that autistic people are no different from everyone else. They respond best to a person who cares about them, who is interested in them and their idiosyncrasies, who listens (to silence, if need be), who waits (for something, anything, that indicates a problem and a solution). In great part, most caretakers and parents who have a positive impact on their autistic child apply years and tears of enormous effort to arrange best situations and solutions to meet needs. They do battle with teachers, therapists, doctors, psychiatrists and psychologists, whole school systems—all in efforts to win appropriate treatment, education, and training. They believe, believe in, and practice the adage, “If you can’t go over, if you can’t go under, go around.” Again and again, every difficult step of the way.
That’s what I did. That’s what I know.
I don’t know what will work for you and your child/client/student. I cannot, and will not, recommend a particular doctor, school, tutor, or therapist. I cannot say which method of treatment will work best for you and your child. I cannot tell you which “authority” or specialist you must do battle with, or what avenues to take in that battle. I haven’t a clue about today’s educational methods or materials, or techie tools, to best help your child.
I can say only you must not stop, you cannot afford to cease or take a vacation from the effort. It is important that you have a support system, people who listen to you when the dam is breaking and you’re sure you cannot stop the flood. People who offer suggestions, but are still there for you if you do not follow them. Professional people you trust.
All of this does not mean your child, like Andy, will get an AA degree, drive their own car, have a real job, or retire with full benefits at age sixty-one. Most won’t. It does mean that the more you are connected with and empathetic to your child, that person will come closer (than not) to being the most they can be.
And that’s enough.
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So, what I offer you is not directions or cures. I offer a shoulder to cry on, an ear to listen, feet that have walked the path, hands to applaud success, and a heart full of empathy.
I can let you know when our book is published, and where you can find it. At this point, we have a title we like, but almost always publishers have their own (marketing) ideas about titles, so I won’t reveal ours, now. I call it, The Andy Book.
And I just had a wonderful thought: If you have a story about What Worked, call or write to me and tell me about it. I’ll add a page to this website, for What Worked. I’m not the Autistic Society, with a regular newsletter and column for special results; this is simply another way for us all to help each other.
Speak to me!