Aspergers is a high functioning form of autism. Four years ago, when my son was first diagnosed, the doctors said about one in 1000 children had at least one form of autism spectrum disorder. With recent reports of it affecting as many as one in 500 children, those reports are somewhat startling, especially with only one in four of those being female. It was not thought, at first, to be hereditary, although recent studies have shown this to be the case. But with the high rate in males versus females, researchers feel it might also be hormonal, making the search for a cause, even harder.
We felt something was wrong at the age of two when our son wasn't talking, but could understand what we wanted. He used to love to watch TV (and still does) and would almost go into a "zombie" state when the TV was on. We used to lay out about 50 black VCR tapes with no covers on the floor and ask him to pick out "Barney ABC" or "Elmo in Grouchland." He could pick out any one we asked him to, understanding what we said, but not being able to express himself. My son would throw terrible temper tantrums and had a hard time keeping focused when I would sit down with him and try to play children's games.
We took him to the pediatrician who told us to wait and see, due to the fact that children progress at different rates. When he wasn't speaking by age 3 and the doctor's couldn't help us find out what was wrong, I started looking into other avenues, such as the Web and books to help me "self-diagnose" the situation. I'll admit I was desperate, almost passionate, to find an answer.
I just knew that he was not progressing normally. That's when I talked to a friend, whose nephew had just been diagnosed with Aspergers. She said that they had only really diagnosed this form of autism in the past ten years and very little research had been done up to this point.
We found a specialist in Lincoln, Neb., and my son was diagnosed at age three. We were told we were lucky that he was diagnosed at such an early age to receive appropriate intervention services as early as possible.
I have to say that at first, we were more bewildered than shocked – not knowing what to do next. Because it was such a newly diagnosed disease, our options weren't really clear and it was still a wait-and-see approach as to how he would progress. Available educational services were also unclear due to his age and the newness of the disease.
At age four, he went from not speaking at all to speaking in full sentences and we noticed that he had quite a memory and vocabulary, using words like "delicious" and "phenomenal" in appropriate context. Memory has been enhanced for our son. He can watch a TV show or movie just once and be able to repeat several lines from the show.
We get into the car, and my son will ask me – almost instantly, "Are we there yet?" I say "No." About a minute later, he'll ask again, "Are we there yet?" Again, I say "No." About another minute later, he'll yell from the back seat, "ARE WE THERE YET?" We are re-enacting scenes from the movie "Shrek 2." This is a frequent occurrence and he thinks it's quite comical.
Social cues are difficult for him, as with many children with autism, and doctors say that he actually picks up social cues from TV shows. There are times when my son will be talking to me and will tell me that's not what I'm supposed to say. (I'm supposed to say what the person said on the show he had just watched.)
My son is now seven and his school has been absolutely wonderful. They have really gone above and beyond to integrate my son into the classroom and keep me posted on his progress. He is only removed if there is too much stimulation or if he needs extra help on a particular subject. He played in his first little league baseball game this summer and just started piano. My son is a terrific speller and can read at a level two grades higher than his own. He has trouble with concepts or unclear, non-factual subjects, but overall he's very bright.
The future is unclear for us. Because of Aspergers, my son is trusting – too trusting and, of course, we're afraid of someone taking advantage of him. He has problems expressing himself verbally and socially.
Our only hope is for his happiness. What we struggle with most is the question: Is our concept of happiness the same as his? While we as parents worry about the happiness of all our children, what will our son's future hold? Through research and early diagnosis, we can only hope that his future is as bright as he expects it to be. I hope, with the rise in awareness of this disease, that legislation can better figure out how to fund the research needed to help so many in need.