Communication is a Human Right

Readers of this blog know that Cheeks spells his communication. He does have some speech, but it’s unreliable; his purposeful interactions and access to education come from his use of a letter board. This has been the single most effective support we have found for his autism, and having it has improved the quality of life for our entire family, not just for him.

But, you may also have seen me mention that not everyone accepts the methodology of spelled communication that Cheeks uses. Some in the autism community insist that it’s not “real,” and that the things communicated using these methods are merely a result of influence on the part of the communication partner. That dismissal of Cheeks’ abilities is insulting. Stephen Hawking initially spelled to communicate, but the authenticity was never questioned. What’s the difference? The presumption of his intellect, that’s what.

My child is entitled to, and capablScreen Shot 2018-07-17 at 5.18.39 PMe of, the same interaction and education that yours is. But he is not provided with it the way that yours is — based purely on an outdated, pejorative assumption that he doesn’t have the competence.

We’ve (mostly) adapted to that reality by homeschooling, and by advocating for and with Cheeks whenever we can. He is receiving an education, participating in his own health care decisions, and gaining a sense of agency for himself at an age-appropriate level.

But all of that is at risk of taking a huge step backward.

Recently, the American Speech-Language-Hearing Association (ASHA) issued two proposed position statements about spelled communication which expressly reject its legitimacy, and state, “…information obtained through the use of [these methods] should not be considered as the voice of the person with a disability.”

ASHA is a credentialing and standard-setting organization. If these position statements are adopted, what little access to letter boards currently in place will be removed. Acquiring an education, or even gathering research about best practices, will become non-existent. Thousands of voices will be silenced.

That is not acceptable.

Read more here:  Quick Facts About Communication Choice

Julia, the Autistic Muppet

Last week, Sesame Street announced that it is introducing a new Muppet-style character with autism. I love this for many reasons, one of which is because they are making her a girl (named Julia). That’s a deviation from what would be expected, since autism is five times more common in boys than in girls. Creating this character as a girl challenges what people think they know about autism, and about who they think may be autistic among people they meet.

Read the story here: http://autism.sesamestreet.org/storybook-we-are-amazing/
Read the story here: http://autism.sesamestreet.org/storybook-we-are-amazing/

I think many people, upon hearing the news, were under the impression that Julia would be seen on the popular PBS show we know and love. In fact, there are no current plans to put her on TV. She’s only featured in one digital story book, called “We’re Amazing, 1, 2, 3!” If you were under the impression that Elmo was getting a new autistic friend in any recurring way, that’s still unclear. Although I wish we could anticipate more visibility for Julia, she’s still part of a great library of online resources designed to celebrate amazing qualities in all children.

The most intriguing reaction to the news of Julia’s character that I found was an article in the New York Times, which suggests that unbeknownst to us, The Muppets already had an autistic character. If you know The Muppets at all, you definitely know this one. He can’t figure out what his audience will find funny, he often misunderstands metaphors, and even has a verbal tic (wokka wokka wokka). You guessed it… Fozzie Bear. Read the article, and more about the writer’s theory, here.

When I read this column, it made so much sense to me. I’ve known lots of autistic kids that interact with others in a similar way as Fozzie. But the best part of all is that no one ever thought to label Fozzie as autistic. As part of The Muppets, he’s just another lovable character among many, all of whom have their own oddities. Fozzie may fit the diagnostic criteria of autism, but he’s not an autism character, or any kind of stereotype. He’s comedic without being a caricature.

Autism acceptance is not simply passive tolerance. It’s not just about finding ways for kids with autism to learn, play and function alongside their peers. And it’s not just about teaching typically developing kids to understand their peers that have differences. At it’s best, and the goal, is to make it about allowing people with neurological diversity to be just people, and not be defined by what society deems to be a disability.

I celebrate this new character of Julia. But at the same time, I just crave more Fozzie.