Tuesday, April 23, 2013

Autism: When the Right Message Goes Mainstream

Jennifer Byde Myers

We want April -- Autism Acceptance Month -- to matter, to help further acceptance and understanding of autistic experiences, happiness, and rights for autistic people of all ages and abilities. We will be publishing Autism Acceptance posts and pictures all month long. -TPGA Editors

When we first started Thinking Person's Guide to Autism (TPGA), our goal was to put, all in one place, the best information from autistics, parents of autistic children, and the professionals who serve our communities. We always felt it was key to deliver this information with frankness and with honesty, especially regarding autistic struggles, and challenges with aspects of education and parenting. We did not want to seek pity, or place blame. Instead, we sought to highlight neurodiversity as part of the fabric of humanity, part of what it means to be human. We wanted to present a variety of perspectives about autism, and approach it all from a place of positivity, with hope for a future that is more accepting, and holds more opportunities for autistic people. We wanted to share what we wanted to eventually see in the wider media.

Three years later, things are really starting to change. We have a long way to go; I won't pretend we aren't still at the beginning of recognizing the autism rights movement as part of the larger civil rights movement. But communities like Thinking Person's Guide to Autism are helping that recognition move forward: I am a TPGA editor, and was able to bring TPGA principles to my article in the April 2013 edition of Family Circle Magazine -- the ninth largest subscription magazine in the United States. I talked about my experience parenting my autistic son Jack -- and I know that so much of my parenting is informed by my relationships with adult autistics, as well as the parents and professionals in the TPGA community.

A typical angle for an autism parenting article would still be the one where the mom is "devastated" by her child's diagnosis, where all she wants to know is "why," and how to "fix" her precious broken child. That's not what I wrote, not what I believe. I'm lucky, I never felt like my child was stolen from me. I never wanted to cure Jack of anything. Make his life easier? Teach him skills? Of course, but while recognizing that he is autistic -- that is who he is. So I wrote some things I know are true: being patient is hard but necessary, and how it is paramount to find "your people," the ones who get you and your family. Most importantly, to me, I got to share an idea that just isn't usually out there in the mainstream: Presume Competence:
When you meet my nonverbal son -- or any disabled person -- please assume that he understands you and what's happening around him. Nonverbal doesn't mean not intelligent. Say hello to him; don't just speak to me or his aide. He may not answer, but his hearing is perfectly fine. If you think he doesn't understand anything, that's all you will see.
I have received emails from strangers thanking me for sharing this one little thing. The notes came from people who are probably decent human beings, who just never had anyone tell them this in a clear way, and now they will interact differently with the world around them, forever. And you know what? It wasn't that hard for me to convince the editor that this idea was important enough to be in the article. I just had to explain it, and *poof*, the typical "pity me and my child" angle no longer fit into the conversation. 

Family Circle magazine didn't just embrace my article. As part of Autism Awareness month on Family Circle's blog, they featured articles by four other TPGA editors, which means articles by autistics (whose voices are often left out).

Mainstream magazines rarely feature autistic parents talking about parenting autistic children, but Family Circle gave Carol Greenburg the chance to answer a question she hears so often, does being autistic give her special insight into parenting her son?
Because I’ve walked this road myself, sometimes my familiarity helps me navigate its twists and turns with my son. For example, I look at similar special interests, sensory reactions and stims (self-stimulatory behaviors) my son has now that I had way back when. I think about what spurred them in me to figure out what’s going on with my son. I can try to help him meet needs he may be having trouble articulating.
And while many publications are still stuck in the blue funk of Awareness, Family Circle posted Kassiane Sibley's essay on how she is teaching self-advocacy to young autistics:
My goal is to give them a library of advocacy skills that they can eventually pull from in most situations. That way, when they need to advocate for themselves, they know at least where to start.
Shannon Des Roches Rosa talks about balance in her essay, What I Love About Thursdays. Autism is not the defining factor in deciding how much time she devotes to her children; they each require nurturing and attention:
...autism doesn’t change my fundamental connections with my children—different as all three of them are. It certainly doesn’t change how much I love my son and want to spend time with him. And it doesn’t change how much I love and want to spend time with his sisters.
And finally, Emily Willingham writes, not about the limits of a "unifocal obsession," but about the freedom her son has to explore his interests:
...not a day goes by that he doesn’t show us the benefit of leaving him space to find his potential, and that includes space for the things he enjoys most.
As perspectives like ours are embraced by "mainstream media," I am hopeful we will see a shift, that the language used to describe autism and autistics will sound more like difference than disease. And if we persevere, there will be less talk about "cure" and more focus on care -- and more autistic voices will be heard, and recognized as autism experts.