Monday, July 28, 2008

Talking About Joey

One thing that happens when I go out into the world is I end up talking a lot about Joey. I think it is partly because I have a fresh set of captive-audience ears at hand, but somehow autism and Joey fall into the conversation. Sometimes people ask. Sometimes it just seems to appear in the conversation, I suspect because my brain just leans that way.

Several of my New Jersey crowd have special needs kids at various levels. How they cope it something very interesting to me. Whether therapy is left off a an inconvenience, their kids are relabeled to fit them into certain classrooms or situations, or they are out there fighting and placing their kids in various activities and placements, they all have ideas of how to cope, how to help their kids cope, how to pay the bills and have a life. They are all apparently better at this last item than I am, because they're all published and working on projects and going on with their life plans.

OK, that go off track. Back to the point. I talk a lot about Joey. I talk to people in the park. I talk to my New Jersey crowd. I talk to folks in the train station. I talk to people in McDonald's. I talk with people in the grocery store. The questions folks ask, the observations they make, the advice they want to offer, it has its ups and downs, pros and cons.

It always amazes me how many people still think autism is caused by vaccines. This idea is so entrenched in the popular imagination that when you speak against the idea, people start to argue with you. People who have no clue what they are talking about, who ten minutes before when the conversation started didn't even know autistic people can speak, relate, and show emotion, are suddenly experts at vaccines and how they cause autism. Weird.

It always amazes me how many folks are surprised when I say Joey was autistic from birth. One person this weekend even replied with a shocked, "isn't that really rare?" Well, no. Most of the studies I have seen seem to indicated it is about half-and-half based on parent observation. I have seen numbers as wide as 80% congenital and 20% regressive, which would make "from birth" far more common than regressive autism.

It always amazes me how many folks say, "wow, he doesn't look autistic!" I refrain from asking what they expected an autistic person to look like. I think the fact that Joey is happy, healthy, and affectionate really takes people off-guard. The idea of an "invisible disability" is confusing to people. It is the same attitude as the people who give us dirty looks (and the occasional rude comment) when they see us using our disability hangtag. Joey doesn't look disabled, so why should we get to use the close-in parking spots? They don't see Joey trying to dart into the street or wandering around the car, and even if they did, would that pass their personal test for who deserves a handicap tag?

But what really amazes me ifs people ask questions, listen to answers, and then ask more questions. They want to know about Joey, they want to know about autism, or they are at least polite enough not to fall asleep. There is hope out there, ready for the asking.


Maddy said...

I'm amazed that you meet such nicer people that I do! What's your secret?

Did the women that you met in NJ have older children than ours?

Whenever I email you it always bounces.

Here endeth the grumbling of the day.

Casdok said...

I just love to talk about C when i get the chance! But it dosnt happen often that someone gets close enough to ask!

Carry on spreading the word!!

Niksmom said...

he bit that resonated the most today was how your peers are better organized, published, etc...i often feel the same way. like i am so overwhelemd sometimes that i cannot figure out how to keep moving through and expanding my (cap)abilities. very frustrating.

that said, i think we are closer to the norm than we realize!

bobbie said...

I'm so glad you talk freely with so many people about this. And I'm sure your blog is helping spread the word too. (It's a great blog, by the way.) It can be daunting when we talk to others and they end the conversation confirming that they haven't changed their minds one bit - but that doesn't always happen. More often they indicate that they now have something to think about. And sometimes you even see a real breakthrough! Keep on spreading the word!

mumkeepingsane said...

I talk about Patrick all the time too. We definately have trouble with the whole 'invisible disability' concept. Usually the second question I get is "well, he's obviously high functioning?" Not a question but an interesting statement. And on the whole the answer is "well, sometimes, I guess"

Oddly enough, maybe because I'm in Canada, nobody has ever mentioned vaccines to me.