World Autism Awareness Day: a Rite of Spring

On a May evening in a Paris theater some years ago, a group of dancers and musicians took the stage and began their performance. The effect was so unexpected—even discordant—that it provoked a riot among the audience. People shouted. Fights broke out in the aisles.

It wasn’t Elvis. It wasn’t even the Sex Pistols. It was Paris 1913, the first public performance of Igor Stravinsky’s “The Rite of Spring.”

How is it possible that a simple piece of theater could evoke such outrage? Over the years, sociologists, psychologists, historians and musicologists have proffered various theories about the suggestive nature of the dance, and the discordant tones of the score, but no one will ever know precisely what sent an otherwise civilized audience into total chaos.

That was nearly 100 years ago. Scandalous as it was at the time, Stravinsky’s “Rite” ultimately taught a whole generation to hear differently. And it is widely credited with making modern music possible.

On this Autism Awareness Day, I’d like to honor Igor Stravinsky, because I believe his “Rite” has a lot to teach us about where we are today with autism.

Autism is many things to many people, but it is essentially a difference of perception—sometimes mild, sometimes severe, with many thousands of permutations. And, like the audience in the theater that night, we are at a fundamental moment: will we cover our ears and flee, or will we try, in whatever way we can, to hear its music?

By asking those with autism to live as we do in our world, we’re asking them to endure a daily cacophony that sends their senses into overload. Is that even the right thing to do? Can we help them find a way through? Can we look past their coping behaviors to understand what they are trying to communicate?

Daily, even hourly, we are chipping away at these questions. And it's heavy work.

There are many, many people in the trenches today who are committed to listening to and reaching people with autism in whatever way they can: through music, art, drama, mathematics, language, pictures—even textures, smells, taste, touch and movement. Here are just a few:

Dr. Stanley Greenspan, for example, whose Floortime approach is so innately respectful of developmental, individual and learning styles;

Professor Simon Baron-Cohen, whose CHAT diagnostic tool is simplifying diagnosis for so many families, and who communicates such a sense of respect for the individuality of those with autism;

Elaine Hall of The Miracle Project in Los Angeles, who used dramatic play to reach her son Neal, and who is sharing what she’s learned with other families, most visibly in the film "Autism: The Musical."

And sooner or later, we end up talking about causation, and the false dichotomy of acceptance versus cure, mind versus body and medical versus educational interventions. And then voices get raised, and lines drawn, and it all goes to hell.

Please. We have to stop fighting each other. Autism is complicated and personal. We have to let our differences coexist.

We have to get past all of this.

People with autism demand and deserve acceptance and openness, and, like those of us who are less than one standard deviation from the hypothetical norm, they need services and insurance and educational options to help them address any and all challenges they face in daily life.

For adults who can advocate for themselves, it comes down to personal choice. For those who can’t, or for children who are too young to do so, we parents and loved ones must be there until they are able to do it for themselves. And we have to do it with respect and with love and with utter fearlessness.

Helping people does not imply a lack of respect. Respect and acceptance doesn’t diminish the challenges that many people with autism face. Acknowledging the challenges our children has nothing to do with how much we love them. Yes, autism can bring confusion and pain, but it also can bring us unexpected gifts.

So on this World Autism Awareness Day, I have a few words for those of you who are making your impact in whatever way:

CNN: You showed true leadership today, on a complex and prickly issue, and I was incredibly moved to see the personal commitment behind your coverage. Special thanks to Jim Boulden, John Dear, Soledad O’Brien and your families for breaking the fourth wall and permitting yourselves to be part of this story. Your perspective deepened the coverage immeasurably.

Insurance companies: you can’t hide from this issue. It is not going away any time soon. Pay now, or pay more—a lot more—later. And quit “losing” our freaking paperwork.

Lorri Unumb: you’re amazing. Your work on Ryan’s law is a critical step toward helping an entire generation of children get the insurance coverage they need.

Politicians: Show real leadership. Pressure the insurance companies and fund education, research, promising therapies. Do not, I repeat, do not, break your campaign promises on this issue. A generation depends on you.

Researchers: Thank you for everything you’re doing to get to the heart of autism and put all this divisiveness about causation to rest.

Therapists, teachers and doctors: Thank you for everything you do for our children. Please don’t discount our concerns and give us a false and temporary sense of security. Early intervention is key, so give us the referral if we’re worried. And don’t forget to look at the whole family—not just the child. Autism affects us all.

Parents: Don’t ever lose hope. Find your people—we’re here and we understand. You can find us on blogs and Internet communities and in the therapist’s offices and at the playground and in line at the checkout stand. And remember—this is a marathon—not a sprint, so find some time, however you do it, to take care of yourselves.

People with autism, our children and families and friends: Even though we screw up a lot, we’re trying, just like you are. And even if we don’t always understand you, we always, always, always love and respect you.

If you've read this far, well, thanks. And if you have something you’d like to say about autism today, please share it in the comments.

Comments

[Ellen Gerstein]

What a wonderful post. And thanks to you for inspiring and educating your readers. It truly shows the power of a mother's love.

[Casdok]

Well said, a great post.
We should all work together for the love of our children.

[kristen]

Susan, you can speak for me any day of the week. This is, quite frankly, the best thing I've read on the subject all week. I'm emailing it to everyone I know.

[kyra]

right on! thank you for posting this, susan.

[niksmom]

Brilliantly said!

[kal]

Here, here! Terrific.

[Karen DeGroot Carter]

Susan, what a fantastic post. Kudos and thanks for such a timely piece. I've just mentioned you and your blog on my blog. Thanks for all you do! K.

[Sariah Harris]

What a breath of fresh air, for a community stretched to its breaking point time and time again, but still bound together by our common struggles...and gifts. Thank you, thank you, thank you.