I think the answer to that question has changed over time. I have a great Uncle that although he was never diagnosed we wonder if he fit the criteria for autism, but Uncle Sissy lived during an era when there was no autism diagnosis, at least it was a rare diagnosis. Uncle Sissy, according to what my relatives tells me, was doing just fine when he fell off that bed at 18 months old then he quit talking. They called him Uncle Sissy because he allowed the girls to paint his fingernails. I don't remember his real name. From what I understand he enjoyed having his fingernails painted. At some point, in his life he was placed in a nursing home where he lived the rest of his life. I wish I knew more to tell you about him, but that's about it. I do find it interesting that he lost speech about 18 months old then later he enjoyed things other males would have found socially inappropriate. Did he have autism? Well, we'll never know, but I do find it a little more than coincidental. So I guess for his generation autism might mean living out your life in a facility of some kind. Three generations later when boys were born I was told the diagnosis meant they would never have girl friends, never live independently, never have good relationships, but the thing that stuck in my mind was they said my oldest would never hold a pencil much less write or draw. The immediate impact on our lives was not something that was even addressed when they were diagnosed. There seemed to be a long list of things that educational professionals told us later, if you don't do
As they went through school their diagnosis meant if they were going to be allowed to participate in extracurricular activities we, their parents, needed to participate with them. Of course, this is probably the one thing about their autism we enjoyed most. We loved being involved with our boys and probably would have been involved in everything they were part of even without the diagnosis, but now it was a necessity. It became necessary or at least desirable for me to educate myself about every little aspect of how to teach children then in order to get those techniches implemented it became necessary for me to be educated to be an advocate, which I did not only for my boys but for other children at other school districts.
At some point, we decided that it was more time effective and less stressful to educate the boys at home. All that parent training that was meant to teach me how to better assist the teachers teach my children was very useful in homeschooling. You see, since there was only two children at their school who had autism there wasn't an autism expert at the school, so I went to the same trainings the teacher attended only the teachers changed every year or two. At least when I was teaching them they had a teacher that had been taught something about autism.
It was suggested the oldest be tested for allergies since he had the worst allergic shiners (dark circles under his eyes) you ever saw. As it turns out he tested allergic to life. Most all the environmental allergies and many of the food allergies had a reaction. Through removing and reintroducing we decided that the only food allergy that seemed to affect him was corn, but corn seemed to be in everything. It also seemed to be extremely hard for others to understand. We eventually tried to simplify things and just encouraged everyone to read the labels and look for corn syrup since this seemed to be the biggest offender. Whenver he was fed anything with corn he seemed to have more asthma and his behavior was nothing short of wild at times. If nothing else he seemed to retreat farther and farther into the world of dinosaurs.
So in the short term autism as a diagnosis meant we had to become experts on subjects we never anticipated neeeded to know about then try some techniques that seemed really bizarre. The thing that surprised me the most was that the educational "experts" would encourage us to try things that our pediatricians seemed to think was absolutely ludicrous. I couldn't understand how I was supposed to handle this. What was I supposed to do when the professionals seemed to think the other professionals were crazy!
In the longer term, we haven't done too bad. Remember how the oldest was never going to hold a pencil, well, how did that same young man end up studying animation at the Art Institute? Hmmmm.... It seems nobody has a crystal ball. The boys have far exceeded expectations of most everyone. So as far as how the autism diagnosis affects a family, well, there are some things that are consistent from family to family but for the most part I feel the overall affect is as individual as the family. And the adventure continues.....
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