Friday, January 26, 2007


CLUB- 1) A group of people united by a common interest or goal. 2) An association to promote good fellowship or social intercourse.

The most quoted estimate of the incidence of autism spectrum disorders is 1 in 166.

My name is Joe. I live with my family in an inner ring suburb of a mid-sized Midwestern City in the U.S. I officially joined the "Families Directly Affected by Autism" club in October of 2004, when our son was diagnosed with PDD-NOS, a type of autism spectrum disorder (ASD). My wife Liz and I had actually joined it when our son was born in 2000, we just didn't realize it at the time.

Our son, who I'll refer to as "Buddy Boy" as that's what I often call him, exhibited many of the typical signs of autism as he grew. He didn't have any words at all at 24 months. Which isn't to say that he was unable to communicate. He "spoke" sentences with one syllable: Dih. "Dih dih dih dih dihdihdihdihdih". He repeated it as many times as necessary, raising and lowering the pitch, until he got his point across. He also spun a lot, flapped his hands, and played atypically with his toys (for example, taking things apart and building other things, which weren't necessarily recognizable as anything in particular, with the parts). He was also generally affectionate with us, and had an explosion of language from 28-36 months.

Buddy Boy received speech therapy and Occupational Therapy for what we were told was Sensory Integration Disorder. When his language took off I remember thinking "At least he doesn't have autism". I have felt somewhat guilty about thinking that ever since, as I have discovered that dealing with autism isn't the terrible burden I imagined it would be, and having autism definitely doesn't mean that one is destined to have an unfulfilled life.

Buddy Boy has a sister, Sweet Pea, who is 4 1/2 years old, and other than being a little hyper, is totally neurotypical.

I think the opening line of Dickens' "A Tale of Two Cities" best explains what it's like to raise a child with autism-"It was the best of times, it was the worst of times". Many people see some of the outward signs of autism-lack of or atypical verbal communication, screaming or tantrums with sensory overload, general lack of eye contact, etc.-and either pity you that your life must be miserable, or give you the evil eye like you're a terrible parent that can't discipline your child. They almost never see the connections that you do make with your child, enjoy some of the great (and funny) things they create, or appreciate that you have most of the "normal" joys and sorrows that come with parenting any child.

Although dealing with ignorant attitudes in public can be somewhat troubling, our greatest trials have come with dealing with the school system. Buddy Boy is very intelligent, and can go on for great lengths of time expounding on such things as volcanoes or what components make up a water treatment plant (when he drew a diagram of a plant and identified one layer in a sedimentary pool as alum I had to look it up to check it out-he was right). He also clears his throat and grunts a lot (an involuntary tic that has been described in school records as making "rude sounds"), also has ADHD (which makes him butt into conversations a lot and try to monopolize them), and tends to perseverate over, and fixate on, small details (for instance he'll decide that he needs to study dust mites, so he'll start collecting loads of dust and won't let us throw it away). He also can be somewhat confrontational (usually verbally, but at times physically) when he doesn't get his way. Some of Buddy Boy's teachers and school administrators have identified him as non-compliant, and have worked actively to get him thrown out of school, rather than actively working to keep him included.

Many of the blogs regarding raising kids on the autism spectrum are written by women. A few are written by men. Many of both are excellent, and I've followed many as they also walk this same path that we do. I've decided to add one more blog to the estimated 60 million other blogs out there. Even if no one else reads this, I know it will make me feel better to get some of my thoughts out there, and I think it's helpful to have another male perspective on the subject.

So pull up a seat and sit a while. I don't plan on publishing something daily. More like once or twice a week. I also haven't figured out how to do the RSS feed thing, or even how to attach pictures yet. Perhaps in time I'll have a snazzy look to the place. Until then, this is it. Like a good movie, the story will have to carry me. It certainly won't be my writing or presentation skills.

1 comment:

Mary said...

Welcome to the blogosphere, Club 166! It's good to have you here.