Friday, July 06, 2012

What Autism Looks Like

When Joey was smaller, I made videos of him, trying to fight against an idea about autism that was driving us crazy. It was remarkably common for people to ask us if we were sure Joey is autistic, since he doesn't "look" autistic. The whole spectrum idea was difficult for people to grasp. That Joey needed support, even though he was "high functioning", was an idea even people in school system were having trouble grasping. This was coupled with the idea that having a child with autism, that being a person with autism, was somehow a tragic disaster, period. Joey is not a tragic disaster. He is a beautiful, wonderful, remarkable person. Autism and all.

You can view some of those videos at the bottom of this blog page.

It is becoming increasingly difficult to get a solid portrait of Joey into a 5-minute video, to capture even a glimpse of him with a single theme. As he grows and his world and personality become, like a growing snowflake, more beautiful and more complex, it becomes more difficult to really give a good idea of who he is. The true talent of a real portraitist is capturing that little glimpse in a single piece.

It is almost more difficult because I increasingly understand that the roller-coaster of his mood and expression is so much part of who he is. This is a difficult thing to understand and to communicate without it sounding or looking like something completely different, and something people judge harshly in our society. To capture the anxiety, and communicate how that molds who he is, who we are, and yet make it clear that we are not going to let him drown in it, that's hard. It's trying to explain to someone you can accept your child as autistic and still get him speech therapy and OT, when they see acceptance and intervention as diametrically opposed; its something that some people just don't get. I don't want to expose Joey to that kind of hard judgement any more than needful. Yet to leave this part of him out seems to make things far more Pollyanna-ish and rose-colored, and leads to other misunderstanding.

I wanted people to understand how unique everyone is, including my Joey. I wanted people to understand that he is who he is. And he is autistic, And he is unique. I wanted to get the message out there somewhere, that Joey is wonderful and joyful and fabulous and unique and... autistic. That what autistic is for us. This is, for us, what autism looks like.

It is definitely not an insult. 50Cent can kiss my cow.


Tammy said...

It's not a matter of not accepting your child. It's that you want to give your child help in being the best he can be. My son has speech and OT therapy. I love him, and accept him, for who he is. I just would like to help him be able to do more than he is able to do.

Joeymom said...

It always baffles me when people don't understand that.

......I'm Anonymous said...

Check back in 20 years. Then I'll be interested in what you "feel".

Joeymom said...

I don't understand your comment, "I'm Anonymous." Please clarify so I can get back to you in 20 years. Heck, I've already been in this game for 10, so I can tell you it will be here in the blink of an eye.