(This post and it’s counterpart “Autism in the Old Days: Diagnosis via St. Elsewhere” are written strictly as a remembrance and as a comparison about how times have changed and how much in the dark we were as parents back when DC was diagnosed. It is about all of the things we did not know and how differently things are handled today. But over and above all of that it is about the slow process to the realization of not necessarily having to follow every direction laid out in front of us, just because the presenters, be it doctors, teachers or therapists, are supposed to be the ones that knew better. Having to figure out for ourselves that the way things were presented and taught to our children and us, as parents, was not always the best way to go about things.)
Back in the “Olden Days” (when we were all walking uphill in the snow to AND from school) when DC was diagnosed (the early 90’s) there was no internet to speak of. There was little information about autism readily available to parents. Yes, there were a few books that I’m sure every parent owned, but really not much else. We had to depend on our doctors and the school system.
One of the first books that I read was a book called “Let me hear your voice”. I remember that even though it was a book about “One family’s ‘triumph’ over autism”, it did not offer a lot of hope. Their child was diagnosed early; at one year of age. They had the resources to provide in home intensive behavior training, something that I would never be able to do.
As I mentioned in my last “Autism in the Old Days” post, DC was not officially diagnosed until he was 5, not for lack of trying, so the other theory that was in wide circulation at the time was that before the age of 3, a child’s brain could be retrained. If you missed that window, it was too late. I missed that window, again not for lack of trying.
I remember when DC was about 6 or 7, I was going on vacation – the first in years. He was going to spend the week with his Dad. I was anxious enough about that – not that I did not trust his Dad, but because I had not been away from him for longer than one of his overnight visits to his Dad’s – ever. But I also remembered that book. I remembered how the author went away on a four-day business trip and her child did not know her when she came home. I had to be talked into going by many, many people and still I really did not want to. I went and of course he knew me when I got home and all of that worry was for nothing. But this is what happens when you have to depend on little bits of information and are pretty much on your own trying to figure things out.
Back in the “Olden Days” there was the Lovaas Method. Yes, I had that book as well. Now-a-Days it is known as ABA. Again, this behavior training had not made its way into the school system and, like in “Let me hear your voice”, most folks that used this method had the resources to do this at home, 40 hours per week. I was a little bit leery about the whole thing. I thought a lot of it was harsh and really just cherry-picked a few ideas here and there from the book. (This is in no way an opinion or a judgement about ABA. I know that it has evolved over the years and is probably nothing like the original offering). It was quite a few years after DC left early intervention that the school system trained staff and designated a classroom to ABA.
Back in the “Olden Days” there was no spectrum, that we knew about anyway. Autism was Tommy Westphall, Rain Man and Bernard Rimland and his son (Autism Research Institute) We knew about no one or nothing else. These, our only examples of Autism, also did not offer parents much hope.
In my quest for information I remember attending a few seminars early on. One in particular given by a woman who spent many years as a Special Education teacher. A woman who I had met in a sign language class, who worked with autistic children, recommended this particular seminar and attended as well. The seminar was supposed to be about the progress that was made by many of her students over the years. It certainly was not. I recall one man standing up and saying “You are not offering us very much hope here!” and she was not. It was all just gloom and doom, so much so that the woman who recommended it, apologized profusely to me afterwards.
That was the last seminar that I ever attended.
Now-a-days we are bombarded with “cures” and causes on a daily basis. Back then, if something hit the news, it was a big deal and please remember that we were programmed to believe that there was really no hope and that we were supposed to be looking for a cure.
In 1998 came the “Break through” in the treatment of Autism. One mother brought her son in for gastric/digestive testing. Secretin was administered as part of the test. Internet was now available but still not widely used as it is today. I don’t believe I even had email until 1998, never mind being able to figure out the rest of the internet.
“Media reports of an individual child’s dramatic improvement after a single dose of the hormone secretin administered during a gastrointestinal (GI) procedure (Beck and Beck 1998) appeared on television and the internet.”
They were touting a cure. I did not even hear about this until I began receiving phone calls from friends, family and almost complete strangers. I have to admit that although we were still being programmed that a cure was the only thing we should be looking for, I was a little bit afraid.
I do not believe I have ever said this to anyone other than Sandy, my boss at the time, who made the mistake of asking about it and then had to listen and watch me bawl my eyes out because I felt guilty that I was afraid of this. What if it was real? How could I not have him treated? What if after he was treated and “cured”, I no longer had the same child? I felt guilty and felt selfish for even thinking those thoughts.
That being said, and I do realize that I have said it to the point where I should just make it my blog header:
My feeling of never wanting to change him has not changed, but he is older now and I worry about the future every single day.
If I haven’t said it a hundred times, then let this be the hundredth; if I were to live forever, I would not change a thing about my son. He’s happy almost all of the time. He loves his life. He is in his own little happy world, but he won’t always be able to live in his own world, he will someday have to live in the real world. Then what?”
Even with all that DC has accomplished over the years, the bottom line is, he will never be able to live on his own without full support. He will never be able to take care of himself. He does not understand safety. He does not understand many many things. He has no siblings and will long out live all of us. He will at some point have to live in some sort of group home type environment with strangers and no one to look out for him. Dependent on strangers. At the mercy of strangers.
It was a confusing time for many of us. Now-a-Days, when something like that happens and we hardly blink an eye…
DC accomplished far more than I ever anticipated he would, despite the “no hope scenarios” we were offered way back then. Much of his accomplishments came when I got to the point when I stopped reading and listening to the way it is supposed to be done and did what I thought was best. We all hit that point eventually.
I had to learn on my own, to choose my battles and understand that he does not HAVE to learn to do everything that other children his age can do.
If he can not learn to ride a bike (and why the hell was that so important at one time?) then he can not learn to ride a bike. He has an adult trike and he is fine with that.
If he can not learn to tie his shoes, they sell Velcro now.
This is not to say I gave up trying to teach him things. It’s just that I let go of the things that are really not important. I let go of the mindset that he has to be like every one else a long time ago.
Because he doesn’t….
The therapies and theories written about in this post should in no way be considered as recommendations or as proven theories. Like today, new theories and treatments come along every day (we had much less of it due to the lack of internet) but this does not mean that any of them are tested of proven. This post is about DC and I and what was going on around us at the time regarding autism.
Next Installment: Autism in the Old Days: Spinning and Stimming
Love your conclusion “Because he doesn’t”, that statement alone bears the weight of everything you have communicated here.
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