Saturday, February 20, 2010

Henri: King of the Mountain

Just a (over life-size) pic of Henri. He gave me a little scare by not moving all night, since about midday yesterday. But when I came down from work for lunch, I found him playing King of the Mountain with Fish.

Yay, Henri! Way to stay alive!

Friday, February 19, 2010

Small Differences Visible

We are standing in line at the grocery store. The little family in front of us is a mom, a dad, a girl about Andy's age, maybe between my two. She stands, perfectly silent, between mom and dad, her hands neatly folded in front of her, looking over the groceries her parents are buying. Her head moves to follow the exchanges between her parents and the cashier. She smiles at a joke. She beams knowing something is being bought for her. She looks happy at a compliment from the cashier.

I have one swinging from the bars that mark the line as handicapped-accessible and divide it from the next register. The other is yelling at me to look at a variety of items at the far end of the line. I prompt them to stay close to me. They are now playing some game in the aisle, one that involves "skating" and racing. I prompt them to return to me. Joey is making a very loud sound, a musical intonation from his new Buzz Lightyear game. Andy is squealing that Joey is hurting his ears.

The mom and dad glance back at us. The eyes of the girl follow their faces. They are giving me The Look. I am busy hugging Andy. I see no real reason to do anything about Joey singing, except to remind him to do it in an inside voice, and then to clarify that an "inside voice" is quieter. He reduces the volume, but picks up the quantity. Andy starts asking for things, and getting upset when I tell him he can't have a balloon, a candy bar, a soda, a toy. He never is allowed these things in the check-out line, but he has the tenacity of a 5-year-old in the throes of marketing genius.

No, the check-out isn't going particularly slowly in front of me, thanks. This is the speed this is all happening- a few minutes, long enough to check less than 20 items through, pay for those items, a couple extra pleasantries with the cashier, and the family is gone.

I'm not that worried about what the parents think of my children. I'm a little worried about what they just taught their daughter about them.

Monday, February 15, 2010

Asperger's Autism

Dear Aspies Who Don't Want To Be Called Autistic:

Come meet my son. He's in the top math and reading groups, too. His main difference from you? You can use language better. We know a lot os Aspies who cannot function as well in the classroom as my son, despite their language-use strengths. Your strengths and weaknesses may be different, but that doesn't make you better than him, or him better than you. Hence "different."

Yes, Asperger's Syndrome looks different than PDD-NOS, or "classic" autism, or even Rhett's (which I understand they are going to remove altogether). But the DSM is about biology, not identity. Not everyone displays all manifestations of any condition, and grouping those who display certain sets is a way to help them understand what they might need; but that doesn't- and shouldn't- change the diagnosis if the underlying biology remains the same. Kind of like everyone is human, no matter their need for suntan lotion.

In our little enclave, we have a number of kids with varying kind of autism. Am I entirely convinced there is one sole cause? No, but whatever the trigger or cause, the results are similar: the brain is "wired" differently from the majority of the population, and the results are a different experience of the world, a different way of handling and understanding experience, and a difference in the way the body and brain handles messages (both coming and going). What specifics result in one child being able to talk, and another not? And do those specifics mean that one child should have a completely different diagnosis from another? How is my child similar to, and different from, a child who has difficulty walking as well as talking? A child who is having a harder time acquiring skills? A child with more severe internal issues as well as external issues? Is it a matter of degree?

I am always fascinated by the idea of Asperger's Syndrome being understood as "Autism Lite." There is an assumption that all Asperger's kids are "high functioning", but I am having trouble understanding what people mean- because the apparent meaning that speech is a skill that trumps all others just doesn't make sense. The child down the street speaks better than Joey, but has a lot more anxiety and sensory issues. I will never forget the older child that came to OT after Joey a year or so ago, who could speak beautifully and always had. However, he insisted on playing with my hair (as in, he just walked over one day and started playing, no preamble), refused to sit in a chair, and spoke beautifully and perfectly, as long as you were talking about space*. As long as you couched everything in terms of planets, spaceships, lasers, and Star Wars, all was good. And when he got particularly anxious, everyone around him weren't people- they were planets. I thought it kind of fun being a planet, but didn't go over so well with his teachers and classmates, and it often got in the way of participating in activities or lessons.

Does this child's perfect grammar and solid diction trump the fact that he could only speak on one subject? Does that make him "higher" functioning than Joey? Is Joey "higher" functioning than this child, since Joey can follow lessons and participate in a regular classroom? Hmmm. Again, we find ourselves mired in semantics. What is "high" functioning? Are all aspies automatically and by definition "high" functioning? And if is the answer is yes, does that make them different at a biological level from someone like Joey, or are we grouping people together by similar symptoms of the same condition, like separating humans by race (or even ethnicity)? Should we quibble about who is more disabled than whom?

Personally, I think there is nothing wrong with celebrating ethnicity, even race, as long as we all agree we are all human. These identities are not about being better than others, it is about being different and diverse. Being different makes the world fun and gives us plenty to share and think about, gives us different perspectives to consider. No difference is "better" or "higher", they are just different.

*I'm actually changing the specific topic, because the topic he liked was so specific and particular, it might be a privacy issue.