The 1988 movie, The Rain Man, starred Dustin Hoffman as an autistic man and Tom Cruise as his frustrated brother. Both did a superb job of acting but Hoffman's portrayal as a savant was perfect. I watched it once and was impressed -- it's too painful to watch twice.
My experience with autism is, I think, unique and certainly not at all like the movie.
Our youngest son, Allen, born in 1965, was diagnosed as "severely retarded with autistic-like symptoms" when he was three. (It took me two years to find a doctor who would test him before he was six. But this was way before autism was well known). That evaluation was done by the University of Texas Medical Center in Galveston. We were told to put him in an institution and forget about him. That, of course, was unthinkable.
Through a friend we found a school for autistic children (the only one in the nation at the time, at least so we were told) 100 miles from where we lived. We enrolled him, found friends to see that his brothers and sister got breakfast and off to school in time and the kindergartener was picked up and taken to a friend's home and every day I drove Allen to "school" and back. They started out with simple behavior mod techniques : "Allen, look at me" and when he did, he got an M&M.
We moved to the Denver area by the time he was four and he was tested again by the Kennedy Center there. Same diagnosis, same prognosis, same recommendation. Instead of sending him away from home, we found a Title 6 program for children with autistic-like behaviors in the Denver school system. He went there for four years and finally they decided they couldn't do anything more for him so they recommended we put him in an institution in Denver.
So we moved to Maryland where we "mainstreamed" him. That was a total disaster, not only for him but for the other children in class with him. Suddenly, though, his next oldest brother was stricken with an aneursym in the brain. That necessitated immediate emergency surgery and, although surgery was successful, a very long recovery. His doctors at Johns Hopkins thought it best for everyone concerned that we put Allen in an institution. We resisted so they put him through all their tests and came out with the same result.
By this time the local school authorities were pressuring us to remove him and it was obvious even to me that we needed some help if his brother was to get well. After a long search we found an institution -- Elwyn Institute -- that seemed warm and caring and when Allen was nine, he went "away to school." I still cry when I think about it.
His brother, Ted, did recover almost completely over the next year, with just a little ataxia that was to remain for the rest of his life.
The situation in the high school in Maryland was dangerous and we decided that we preferred to move to a small town where children were not as violent as they were in Maryland, so my husband took a job with Phillips Petroleum Company and we moved to a small town in northeastern Oklahoma. We took Allen with us. That year was a nightmare and we finally decided that he was better off in, as Dr. Freeman at Johns Hopkins had said, "can be challenged to the most of his ability and still be in a safe environment where he'll develop to his fullest potential and be happy." Hissom Institute in Oklahoma turned out to be just that kind of place. His pediatrician, who had been trained at Johns Hopkins, was on the Governing Board and took a personal interest in helping us monitor his care. And we brought him home every other weekend. Things went very well for a year. Allen attended school, was in the Christmas play, and made slow progress in the areas of speech and cognitive development.
Then, suddenly, another aneurysm hit his brother. This time surgery wasn't as successful; when he woke, he was totally paralyzed except for his eyes. He could blink. Once for "yes," two for "no." In six weeks he was dead. During that six weeks I stayed by his side, day and night. My husband visited Allen a couple of times, so he knew we hadn't forgotten him. But on the day Teddy died, Allen suddenly blew up and threw a fit the likes of which was downright historic. (By this time he was 6' 7" tall, so he could -- and did -- cause considerable damage, both to himself and others.)
For the next ten years Allen was in Intensive Care at Hissom. He continued his education until state law stopped him when he was 21. We kept a close watch on his care and it was, in every way, superb.
Then came the ACLU and a lawsuit accusing Hissom of abuse and eventually closing down the institution for good. Those years are another long story. We were very much involved in trying to stop them.
In 1990, facing the inevitability of placing Allen in a group home in our community (with its limited resources but that's still another story), we had extensive medical, psychological and psychiatric examinations done on him. As a result of the medical exams, and MRI specifically, we learned that his temporal lobes simply had not formed. That, the neurologist said, explained everything. My husband made him repeat several times to me, "It's NOT your fault. It's not your fault." (I had read Bruno Bettleheim on autism and had suffered guilt for years, although I couldn't figure out what I had done to abuse him since I had loved him and treated him just like his two brothers and sister. And they were fine.)
They put Allen on heavy medication and sent him into the community to live. Placement in a group home was not possible for two reasons: none was available and his violent behaviors were not compatible with living with others. So we rented a house for him and hired a staff of five people to look after him 24/7.
Every year for ten years Allen had to move because the owner wanted to sell the house or neighbors compained because too many people came and went...or whatever.
Then President Bush came up with a program that allowed people with low incomes to have special financing to buy a home in the country, through the US Dept. of Agriculture. With that program we were able to buy a home for him. (You can see the story of that, with pictures of Allen and his staff) at http://www.angelfire.com/tn3/tiedemannvols/.
Although Allen is receiving the very best of care and seems quite happy with his life, if I could, I would lecture across this country in favor of keeping institutions open. It is totally selfish and wrong to assume that every disabled person should and can live in the community and I have eleven years of experiences to back up that assertion. If the State of Oklahoma had spent HALF the money in running Hissom that they spend on the lawsuit and now spend to keep people "mainstreamed," they would have been able to provide exactly the care that the more handicapped need as well as put those who can function in society into the communities.
So that's my soapbox. I think we have tried every possible program, medication, etc. possible. I even tried faith healing at one point. I quit reading books and torturing myself over it several years ago. Today we supervise his care very carefully and we are blessed with caretakers who love him and take great care of him but we are very aware that our situation is unusual. We're grateful for it!
Those are the high spots of our life with an autistic son. We've learned a lot and the most important thing we've learned is that parents of autistic children MUST be proactive. That activity must be not only educationally but politically as well. Every minute counts.
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Comments: 6
What amazing love, and courage, you have shown throughout all this! I have no personal experience in this area (and I thank God for that) but even a molecule of common sense should tell people that there will always be a need for institutions of the kind you describe. Not everyone is born perfect; for whatever reason, some have problems that make it impossible for them to live in society.
Your son is fortunate to have caring, articulate, and resourceful parents who have loved him and done the best that they could for him, all his life.
Allen has enriched our lives in so very many ways. We've learned all sorts of lessons we never would have learned any other way. We've experienced wonderful and horrible things and have learned from each and every one.
Blessings come in odd packages sometimes, I think.
I'm not referring to this article specifically, and only you and I will know what I am talking about.
But your story here, tells me you are a person to be admired, and held in high regard for your compassion and humanity.
I cannot imagine having to have endured the pain you've endured.
My pain is nothing compared to what my son lives with. It is he who has taught a loving family what courage is, how to be patient, persistent and (I suspect most important) how to love without being loved in return.