Thursday, September 24, 2009

The Way Things Get Said

Autism Speaks has a new ad campaign out there. Its a video that starts as portraying autism as the Bogeyman, then tries to show families as the Anti-Bogeyman. What a great fundraising message: give us or money, or the kids get squished. Oh, and your marriage and finances, too.

I find that offensive.

I won't sit here and try to say raising an autistic child is all sunshine and roses. Nor is it cheap. Schools do not have the resources- or often the education and training- to provide appropriate supports and therapies for autistic kids. Autistic adults are even more on their own. BUt I have said it before, and I will say it again:

Joey isn't sick. This isn't about curing anything, because there is nothing to cure. Just like we put braces on crooked teeth, but we don't talk about the kid being sick. Or we have kids wear glasses to correct vision, but we don't consider that child sick.

Our culture is quick to medicalize everything. This is partly because of insurance. Medical insurance only wants to pay for things that can be put into terms of disease. Developmental differences are not diseases. That's why medical insurance doesn't want to pay for the therapies that help individuals who have them. They want the schools to pay for that, and they have a point. However, there is such a thing a preventive medicine. Getting my child to speak and move now is going to prevent a lot of health issues- very expensive ones- down the road. Just like straightening teeth or correcting vision.

Joey is who he is. He is not a changeling. No bogeyman swept into my house and stole him away. Joey was born autistic, which means his brain is developing differently than other people's brains. In Joey's case, this development has resulted in a disability. His ability to control his body (and even, we think, for his body to control itself) and communicate has been affected by this difference in brain structure and development, and so we need to give him skills that he needs to thrive in a society that is not designed to accommodate differences. Our society's world isn't made for near-sighted people. We give them glasses.

Joey would not be the wonderful, joyful, lovely human being he is if he was not autistic. He would be someone else. Perhaps that person would have also been wonderful, joyful, and lovely. I don't know. He's not that person. I have trouble wrapping my mind around the idea of Joey being someone he isn't. I have no idea why people even try. "If my kid didn't have autism, he would be this other person..." Huh? That is what Autism Speaks would have you believe, and think about, and give them money to get other people to think about. Try it for yourself. If you weren't you, who would you be? See what I mean?

There are many ways of saying the same thing. Autistic people need supports, need understanding, need community, just like everybody else. Why not focus on autistic people as people, as human beings, and appeal to humanity? Has our culture lost so much touch with the idea that we are all in this together?

Edit: What Susan said. That's what I mean.


Niksmom said...

You might be interested in watching this positive and powerful video from Rethinking about changing the conversation.

farmwifetwo said...

I can't imagine mine being different either.

But I do know that ASAN and the Hub's message of "just give them a little more support", "those autistic's with abusive behaviours should be ignored", "autistics that hack into the UN etc are not autistic", "autistics that kill are not autistics", "the only autistics that are true autistics are those that can manage in mainstream society"..


They claim to speak for autistics but they don't.

Sorry, autism sucks on a good day. Including today at an IEP meeting that I'd rather not attend. I can't go camping, I have to nag him to poop on the toilet and at nearly 8 still wipe his backside.

Doesn't mean we don't watch TV and snuggle, play ring around the rosie in the kitchen, and having fun.... but the reality is... It's ok at 8.... but he can't be developmentally 4 or 5 at 16 and manage in the real world.

Autism is degrading for those on the true "autistic" end of the spectrum. They get put into group homes, segregated classrooms and ignored. Not just by NT's but by ND's and ASAN and it's ilk.

"Just give them a little more support"... so, does that include during "intimate" relations in the bedroom?? Laughs... no... why... b/c according to ASAN they aren't autistic anyways!!!! They shouldn't be cured, they shouldn't get married, they shouldn't have a family, a lover, a best friend...

They should just sit over there in the corner and be ignored.

Is AS's video a little on the harsh side... Yes... but it's also very much on the true side... and it's that TRUTH that Adult autistics, the one's that have "real lives"... don't want out there.

Joeymom said...

Excuse me, but I am part of the Hub, and I have never said anything remotely like inappropriate behavior should be ignored. I have no idea where you are getting the rest of that list, I obviously don't read the blogs those are on.

The Hub, like many other communities, has a variety of voices. They give us something to think about, new ways of seeing issues and experiences. Yes, there are people in this world who embrace autism in a way that is different from my own attitude. I don't agree with everyone. That is part of being a educated human being.

The truth for us is that the AS video just made my life, and that of my son, a lot harder by portraying autism and autistic families in a way that was not constructive and positive, that did not emphasize the innate human-ness of my child (who will one day be a man). Instead, they chose to dehumanize him, and portray families as victims.

I am not a victim. Are you?

The reality is that I did just watch my son eat alone in a sea of people. He does need support, and to be taught to cope, self-regulate, and socialize. So... why not say that, instead of portraying my child as some kind of possessed changeling? He's got enough of that attitude to deal with already. When he asked a classmate "Why do you have a cast?" (probably for the umpteenth time), instead of answering him or even acknowledging him, she turned to her father and said semi-quietly "I don't get that kid. I don't understand him." Why not let people know its ok to say, "Joey, I told you already!"

Autism is not degrading. The way people treat autistic people is. Discrimination and dehumanization are degrading. Autism is just a word to describe how my son thinks and develops.

I must say that the implication that my child might not be "on the true 'autistic' end of the spectrum" is offensive. To discount the views of people who are autistic just because they are "not autistic enough" is the same as being "not disabled enough." Its insulting, degrading, and offensive. These people have the right to speak for themselves. My son has the right to speak for himself. I am working hard to help him and support him and get him the skills he needs to be able to do so. He's working even harder.

Please, once we get those skills in place, do not tell him to shut up.

Unknown said...

ignore farmwifetwo. She is going around to all the blogs and posting stupidity, ignorance and hate. Don't let her ruin your day. Thanks Nik's Mom! is my site and I am very proud of that video.

Ali said...

farmwifetwo posts the same screed everywhere that allows her to--please don't take her to heart. She does not seem to grasp the idea of a spectrum, or a non-medical view of autism. The idea that all of us on the spectrum, from the likes of me (going through being diagnosed at 24, quite mild) to Joey to the patient I am currently working with at my job (15 and nonverbal, with questionable ADL skills), need supports that speak to our idividual strengths and weaknesses is not a concept she seems to grasp. Joey is fabulous from the sound of things, and you are an incredible parent. I hope, if I end up with an autistic child I will be as good as you are.

Casdok said...

I was just about to have a rant at farmwifetwo but decided against it.
Good post.

Joanne said...

Oh, this is beautiful. Do you mind if I link it to my son's blog? I think we could all use this reminder of who we are, and who are children are.