Guest Post: Let's Leave Bill Gates Out of This

Today's guest post comes from a virtual real-life friend of mine (if that description makes any sense at all). Years ago, when Austen was being prodded and poked and tested due to a severe speech delay and I was in the throes of my deepest "he is NOT autistic!" denial, this wonderful woman gently told me that Austen sounded a lot like her son Jack. She said that she wasn't saying he was autistic, but if it did happen that he was one day diagnosed with autism, it would not be the terrible end of all things: he would still be the beautiful child I loved and not a bit about him would change with that label. And she was very right and set me off in just the right direction. But I really shouldn't write an introduction, since she did me the favor of writing her own...

(Note on comments: I'm a control freak and moderate my comments. I will be offline until the end of the week, so please do leave comments, but be aware that they probably won't post until Friday.)

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Image credit: Photo by mksegh on Flickr Licensed under Creative Commons

Hello MPJ blog readers. I am one of MPJ’s virtual friends. We have much in common – birthplace, university, sons with autism, being touched by addiction – but we have never met in person. I enjoy MPJ’s virtual company very much and follow her blog. In 2007, she inspired me to start blogging, but that was a very short-lived exercise.

I would love for people to get to know more about autism spectrum disorders and what it is like to live with and love someone on the spectrum.

I believe that greater awareness of and sensitivity to the challenges experienced by people born with an autism spectrum disorder will be of enormous benefit to them. ASD presents as a way of thinking, feeling, interacting with, and experiencing the world that is different from the norm. Folks on the spectrum are not likely to change, no matter how many times a day we tell them that they should stop doing x, y, or z, it really is weird. Nor should they be expected to, as I am coming to realize. Though it is probably not too much to ask those who have started puberty to please use deodorant, practice washing ALL the shampoo out of their hair, and apply zit cream each and every day. Really.

It can be difficult to get to know someone on the autism spectrum. In the case of my son Jack (his real name, because I can’t think of him as anyone other than Jack), he is not all that interested in having people know him. This might best be illustrated by a recent incident whereby some classmates stopped by the house after school to say, “hi” - and he threatened to call the police. Charming.

Here is something I wrote about Jack in the Fall of 2007. It was in response to my hearing – yet again – someone cheerfully inform me that “you know, they say that Bill Gates has Asperger’s.”

Thanks for that. Ahem.

“My son is a pioneer. One of the first in a wave of newly diagnosed high-functioning autism spectrum critters. Nobody knows what to do with him – including his parents. He would provide stiff competition in the Most Annoying 12 –Year Old Boy World Championship Finals. He would get a good run from his autistic friends, the Perseverator, the Echolalist, and The Boy Who Is Not Necessarily Finished Experiencing His Food Once It Enters His Mouth. But for the past six months my son has been training quite intensively. He is strict with his daily regimen of sticking his face into others’ and making loud groaning noises even when one is trying to converse with the nice car salesman, spitting on the floor, letting doors slam into people’s faces no matter how elderly or frail, interrupting conversations with howls or maniacal laughing, perseverating about hippopotami, rolling around on the floor in public places such as the lobby of the AMC movie theater, spilling, licking his shirt, chewing on his pen cap even though he’s been told 171 times in the last hour that he will pay for the replacement orthodonture with his own blood should another one of those metal things pop loose.

It is a generally accepted truth that a redeeming side effect of autism is those so affected also exhibit a special genius, the “savant” in idiot-savant. Hmm. The HFA, neuro-atypical boys that I know are no dopes and can get by with As and Bs in school. They have talents, for sure, as do the rest of us. However, they are not geniuses nor gifted in any way, except in being blood pressure de-stabilizingly annoying.

Do I need to qualify this by saying that I love this child deeply, passionately, painfully, with every frazzled nerve-ending and worried molecule and the whole of my sometimes broken heart? I hope not.”