This is a piece I wrote at the request of a site (a very small funky site) about our experiences with our son's road to a diagnosis and the effects in our family. It was actually pretty cathartic for me to write it, just to finally get it all down on paper in one place.
Asperger’s Syndrome and Our Family
Andy was my third child, so I wasn’t without experience in the world of parenting. He was a fairly typical infant, except at times he seemed to cry more than I remembered my first two doing, and typically once he got going he was inconsolable until he worked himself into a tizzy and then fell asleep.
As he grew into toddler-hood, we hoped every day for the first words, to hear a “mama” or “dada”. He also seemed very easily amused by himself, to the point of almost being in his own world. My mother was concerned that he couldn’t hear, a point she made by banging pots right behind him while he was playing – he didn’t even shudder. Specialists and their tests all confirmed that he was a perfectly healthy little boy, who was maybe behind in his language. A speech teacher came to the home, and by his third birthday he was putting together 3 and 4 words.
About this time we moved across the country, and settled in to a new life. Andy seemed to handle it all in stride. He turned 4, and we bought him a two-wheeler, which he was riding without training wheels within 6 months.
Preschool was a nightmare, he hated going, and every day was a struggle. We learned that if he got his bath and got dressed the night before, he was a much nicer kid in the mornings. He still didn’t like preschool, but he fought us much less! To this day, he goes to bed dressed for the next day’s school.
By kindergarten, we had moved again, to a better town 2 hours south. The new school was wonderful, but Andy soon found himself in trouble. A lot. Everyone, from the principal, to the guidance counselor and classroom teachers all agreed it didn’t seem he was being bad on purpose, that he had no intent to break the rules, but that he couldn’t help it.
Most of his behaviors were non-aggressive – things like being too close to classmates in line, getting distressed when the day’s schedule was changed unexpectedly, and it didn’t help that he had no friends and was picked on mercilessly making the days hard for him - but he loved school and rarely missed a day. He learned to read right along with his peers, however his handwriting unfortunately appeared virtually unreadable – even sometimes to him!
As the years rolled by, the problems continued to mount. He always had an odd gait, that involved both the way he placed his feet down as well as the way he swung his arms, making me concerned that perhaps he had some kind of palsy, for which he saw a neurologist who declared him perfectly healthy and stated he would “outgrow” it.
By winter break of 4th grade, it was apparent that we had big issues. Huge meltdowns over seemingly minor issues, a 10 year old who acted 5 much of the time, misunderstandings in communication that seemed impossible considering his obvious intelligence. Sitting at my desk at lunch on January day in 2005, I started putting my son’s behaviors into a search engine, in pairs. No matter how I entered them, the only hits I got were for something called AS or HFA, neither of which had I ever heard of before. After a half hour I finally decided to read one of the articles on AS, to see what it was and if it could really have anything to do with our son’s issues.
Crying, I called my husband and told him I’d found our son. I never read anything that so clearly described exactly what I was seeing in my child then that article. All these seemingly unrelated issues were actually all under ONE syndrome! I was so relieved to finally be on the right path to helping our son.
It was another 4 months before we got an “official” diagnosis from a psychologist, who had no doubt in her mind our son has AS. She referred to him as a textbook case for a syndrome for which there is no such thing.
The school has been wonderful in providing any and all accommodations our son needs to access his education. They understand his behaviors and have gone the extra mile every time for him.
I’ve done a lot of research since that time, and learned a lot about AS and how our son thinks, and why he does some of the things he does. Because of this, I’ve been able to help him greatly lessen the number and severity of his meltdowns, we’ve learned so much about his sensory issues, and how the noise and light can bring on a total shutdown. This is what I think was happening when he was a baby, but we could never figure it out. He has his perseverations, and his stims, but by and large those are things he engages in at home, to relax.
In the beginning I would have said if there were a cure, send it my way now. However, as time has passed and I’ve learned more about my son, and developed a support group of people with AS, I’ve realized that what my son needs isn’t a cure, but just the help and support to be the best HIM he can be. He is smart, loving, funny, and is a good person. He can do great things in this world, if we just let him.
"shorter of breath, and one day closer to death" - Pink Floyd
“There is no such thing as 'on the way out' as long as you are still doing something interesting and good; you're in the business because you're breathing” Louis Armstrong