Wednesday, April 2, 2014

My take on autism awareness & acceptance

Confession: I've never understood autism awareness.

Today is World Autism Awareness Day, and there are a lot of blue lights flicked on and puzzle pieces being thrown about. You may have seen  blue profile pictures on your Facebook feed. But this day and this emphasis have always seemed short-sighted to me. Be aware of autism? OK, done. Lots of people know about autism. Now what?

Some autistic people and their families have altered this to be a day of autism acceptance. That's better. But still something about the term "acceptance" rubs me the wrong way.

On their own, without the commercial and feel-good baggage that we've tacked on to them, awareness and acceptance of autism are fine goals. But they are not enough, and I find a day dedicated to either one of them lacking and maybe even offensive. Here's why.

Autism awareness isn't sufficient, and it probably makes little difference in the lives of today's autistic people and their parents. So you're aware of autism--the statistics, the symptoms, the latest news stories? Good for you. This doesn't change anything for us.

I'm uncomfortable with the way Autism Speaks has co-opted this day as its most public-facing campaign because of what awareness really means to that organization. Its purpose is to make the public aware of the "public health crisis" that autism is (presumably to gain political and financial support for prevention?). Autism Speaks' Call to Action read just last year, in part:
"This is autism. Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future." Puh lease. Spare me the panic and the life-is-over narrative.

I don't think that a so-called crisis has anything to do with current autistic children or adults as individuals.  A "crisis" speaks to prevalence numbers, trends, and costs to society. Cures. Prevention. Oh, and all the prenatal ethical issues that prevention brings up. You know what I'm talking about there, don't you?

I don't want or need a cure. Maybe because a cure is too late for our family, or maybe because I'm still not sure where autism ends and Soren begins. Maybe because I don't know what I would have done if I had seen an autism marker during Soren's amniocentesis. Maybe because it doesn't matter.

Autism awareness wasn't started to make the public aware of your child or my child and how we can make this a more humane place for them to live. It's not about how to include autistic individuals in everyday life or how to see their unique strengths. Until recently, Autism Speaks' version of autism awareness used scare tactics ("1 in 88 can't wait!") as way to encourage funding, and that funding goes primarily toward research--future stuff, not ways we can make a difference today.

So, many in our community have broadened this awareness to be acceptance instead. At first this seems like a great move, one focused on present autistic individuals and incorporating them into society. But is it really our place to accept them? How condescending--apparently it takes acceptance by the non-autistic world to grant a place at the table to autistic individuals. What if we had a day to accept African Americans? or female pilots? or lesbians? Do you see how this is paternalistic? Who says we get to be the ones to deem other people acceptable? How pompous.

And what does acceptance mean, really, without context? Accepting the existence of someone else doesn't mean working to integrate them fully into our community. Just accepting African Americans isn't the same as ensuring they have full access to education, housing, and workplace advancement. Just accepting the existence of female pilots doesn't mean that you don't make a snide remark to your seat mate when you realize a woman is flying the plane that you're on.

We need a day, an effort that goes one step beyond acceptance. I don't know what that word is, but it looks like making an effort to include autistic people in all aspects of our community life. It's making accommodations when it can make life easier for a huge part of our population. It's about making education and job opportunities a priority. It's about planning now for housing issues for autistic adults and autistic seniors.

So that's why awareness and acceptance are not enough. We can do better. And here's what I do want; here's what a day dedicated to autism could emphasize, just to start:
  • Softening of your heart. Yours. And your kids'. But it starts with you. I want you to embrace the quirk, the anxiety, the difference that you see. Actually, I'd love to see a gentleness toward all difference. And this means putting pity--for autistic individuals and their families--on the back burner so that you can see people in all their dimensions. It's fine to feel compassion about the difficulties that autistic individuals and their parents face. Yes, this road is daunting. But remember that we love our children as they are, and we want you to love them that way, too.
  • Funding for and focus on special education--groundbreaking, out-of-the-box thinking about what our kids need, how they learn, and how they can be integrated into our schools. And that's what we want for all our kids, isn't it? Too often special education is driven by lawsuits or threats of them. I'd love to see school district administrations lead the way in making educating our most vulnerable children a priority. (Just so you know: In Seattle, 14%+ of public school students are eligible for special education.) 
  • Funding for long-term care, occupation, and housing of our children--and as those children become adults and senior citizens. This would mean that parents don't have to worry about trusts and wills and faking that our child is destitute so he can draw from state and federal funds when he's an adult and/or when we're not longer here. 
  • Respite care for parents, paid for by the state in a timely manner. (Washington's DSHS has a significant waiting list for its individual and family supports program.)
  • Reasonable wait times to get autism diagnoses. Wait times are typically 3-12 months long in the Seattle area (!).
  • Self-reflection. How are your judgments about acceptable behavior, valuable employment, and what's normal in general impacting others? 
Maybe we can change this day to Autism Advocacy. Or Autism Action. That's what I'll be working for.

Thanks for listening. I welcome your feedback on this issue.



4 comments:

  1. If your post had a like button, I'd break it from liking it to much.

    Bravo.

    ReplyDelete
  2. I think you're right on Jenny. I hope some of these well-meaning people in Autism Speaks and other organizations some how read this blog entry. I will share it on Facebook.

    ReplyDelete

 

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