April 7, 2014

Autism; Or, Emerging From The Dumpster

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What is the issue?

He is standing in the dumpster again for the third of fourth time since we started working together. When he starts to climb out I counterbalance it, so he can emerge safely. Judging by the occasional skinned knee and nose, he does this when I’m not around too. After he climbs out he says he’s not sure if he threw out whatever he’s looking for. In reality, I’m not sure he remembers what it was that he was searching for.

“Okay, let’s go wash our hands, Brian” I say, trying not to think about what his parents would have to say if they knew about this.

I am paid to help clients like Brian become as independent as possible. Generally I work on socialization, but occasionally I work as a job coach as well. Through this work, I have become acquainted with how little support the autistic receive in this country. It is a growing problem no one seems to know about, let alone acknowledge. In 2001, the National Institute of Health’s budget allocation for autism was less than that for sleep research, and totaled only 6.6% of what was allocated to study aging. That $169 million outlay pales in comparison to the estimated $137 billion autism costs society each year.

After returning from the dumpster, we wash our hands, and then sit down to watch a movie. During the movie he’ll ask me things: “Should I repeat that?”, “Should I make fun of Asian people?”, “Should I rob a bank?” Often he can’t finish the questions before getting lost in hysterical laughter. I change my responses to keep him on his toes, but I still haven’t come up with an appropriate answer to my personal favorite: “Should I tell everyone I’m in a relationship with Regis Philbin?”

Advocates, the healthcare industry, and the government have done a very poor job of putting a face on a disability that affects more than 1% of the population. That’s why it is so important to me to individuate Brian, to present to you a single, complex, real case in contrast to the hegemonic vagueness associated with autism in our culture. I want to show you who he is, so that you can understand how deserving those with autism are of our love, of our support, and most importantly of our attention. Because when Brian didn’t feel like showering after coming out of the dumpster, I got to wondering how he could feel so comfortable in a pile of garbage, and I thought involuntarily “maybe it’s because he’s been put there his whole life.”

That thought was unfair, of course. He hasn’t been put there so much as left there – a victim of societal neglect rather than willful abuse. There is not enough governmental support, not enough research funding, and not enough compassion for these individuals. I am proud to be part of a movement advocating for greater freedom and respect for the autistic. The fight is not an easy one. In fact, our cultural discrimination against the developmentally disabled is legally sanctioned. The U.S. Department of Labor allows for workshops that employ the developmentally disabled below the minimum wage. In some very limited cases, this might be beneficial. But in 2001, more than a quarter of the people employed in these shops earned less than $1 an hour. This is in spite of the fact that every single person I have worked with is fully capable of adding at least minimum wage value to a firm especially since agencies can provide job coaches for them.

The underemployment of the developmentally disabled is a particularly dire problem in a country that seems hell-bent on cutting the social safety net. In fact, the hardest part about working with the autistic is thinking about their futures. Brian, who lives on his own, is given 30 dollars a month in food stamps, which is most likely going to be reduced after the latest round of budget cuts. So I work and I think: When his parents are gone, how is he going to eat on a dollar a day? The truth is, I have worked one-on-one or in small groups with a few dozen individuals, and there is not a single one whose future I don’t worry about.

I’m not going to say there won’t be points when an autistic employee will require more instruction than a non-autistic employee; but isn’t it the job of civilized societies to take care of the most vulnerable members of the group? And anyhow, I have seen them succeed in roles that people assume they can’t fill. I have witnessed their success stories and I know that the extra effort is worth it.

There are too many loving and capable individuals on the spectrum to continue ignoring their needs and their possible contributions. There’s too much to be gained socially, civically, and economically to refuse to bring the issue into the open. We need to do better across the board. We need more research to find the causes and to find the best treatments. We need more direct support staff to help with the cases and to improve outcomes. We need more funding to insure financial viability. April is Autism Awareness Month; please take some time in the next few weeks to help, because every day we don’t fight to create more integrated and functional members of society is a missed opportunity to make the world a better place. TC mark

Weston Gardner

Weston’s on twitter. You can follow him or tweet mean things @westongardner. His badminton shorts still fit and he’s …

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