June 2017


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[personal profile] nightengalesknd
On the eve of April, Sesame Street announces the development of a muppet with autism. This muppet, Julia, has been a character in an on-line book for about two years. Now she has been built into muppet form.

(Personally, I’ve long felt that Bert is autistic. Bottle caps? Pidgeons? Oatmeal? Just wanting to be left in peace and quiet? But that’s another story.)

Sesame Street has a long history of doing disability well. When people ask when I decided to be a Developmental Pediatrician, I sometimes say, "since I was 4 and tried to learn sign language watching Linda on Sesame Street." I remember Big Bird’s excitement when Linda got a closed caption device and could “watch television for the very first time.” I remember when Itzhak Perlman appeared on Sesame Street. He and a young violinist played, and remarked how things that are easy for some people (stairs/playing the violin) are hard for others (stairs/playing the violin. Maybe that was when my career started. I remember the wheelchair-using muppet princess who needed a ramp to get out of her castle. I remember real children with disabilities on the street, Tarah and Emily, who both talked about their disabilities, and a little boy with Down syndrome whose name I did not know at the time who was just there as part of the crowd. I assume he was Jason Kingsley. His mother wrote for Sesame Street and wrote the famous/infamous Welcome To Holland essay. Jason is now an adult who has co-authored a book Emily is now an adult disability blogger worth reading.

With Julia, they did some things well and some things badly. The character is a girl, which helps buck stereotypes. She flaps her hands. She is verbal but not as verbal as other muppets her age. She plays with the other muppets sometimes and does her own thing sometimes. I've seen some criticism that Julia is explained by the other muppets rather than explaining herself, but I think it would probably be less realistic to expect a 4 year old autistic muppet to explain autism than a 4 year old muppet with some other disabilities.

One thing they did well was consult with autistic adults in the development of the character. At least, ASAN representatives report they were consulted. Representatives from Autism Speaks and other parent organizations were consulted. Lots of parents and professionals were consulted too, but some autistic people were actually involved.
What's interesting, though, and by "interesting" I mean "infuriating" is that Sesame Street does not seem to have mentioned any autistic input to the media. 60 Minutes did an entire segment that I stumbled on by accident. The only time the journalist, Lesley Stahl, addressed someone autistic was when she talked to Julia herself. It was very cute and all, having her talk to Julia and Big Bird and Elmo, but in contrast they showed rooms of professional experts who had been consulted. Then they started making a big fuss about how the puppeteer is the mother of an older child with autism. They showed brief video of him but no one talked to him or asked his opinion. There’s a few articles that quote parents talking about how pleased their autistic children are seeing Julia. But not a one autistic person is directly quoted.

When autistic people speak up online about this omission, they are told that the puppeteer is the mother of a child with autism as though this should

On the eve of April, I witness an online conversation about IEPs. Someone mentions she was never permitted at her IEP meetings. The response is horrified, doesn't the parent HAVE to be there? No one recognized that the writer was referencing meetings about her own IEP. (While the student is supposed to attend in the US, this is not a requirement in the country where the poster lives.)

On the eve of April, I prepare to give a talk on autism and advocacy considerations for teens transitioning to adult care and services. The target audience are parents and professionals. The speakers are all professionals, some of whom are also parents. We have a fee for professionals and a lower fee for parents. We don't have a fee for self-advocates because none of the planners thought about them as a potential target audience. There aren't any (openly) autistic people speaking because none of the planners thought about them.
At one point in my talk I plan to quote a friend who is an autistic special education teacher. I expect I will have to say that multiple times before people catch on that this person is actually autistic, that I'm not just referencing the fact that she teaches autistic students (which she does, too, sometimes.)

I tell the story about a similar conference I was involved with a few years ago where I was part of the planning committee, and suggested we invite a young adult with a developmental disability who had recently graduated from high school and was working or in college.

“Good idea, let’s have a parent panel!”

I had to repeat my suggestion three times before anyone in the room grasped that a disabled young adult was a different concept than the parent of a disabled young adult.

April is advertised as Autism Awareness Month, which is being reclaimed as Autistic Acceptance Month. The idea is that “awareness” quickly becomes “bewareness,” a list of statistics and warning signs. All these people, at Sesame Street, in the media, on the online conversation, at the conference I will attend, are all “aware” of autism. Some are professionals who have worked in the field of autism for years, perhaps decades.

What they don’t seem to be aware of is that autistic people are listening when they talk, and that many autistic people are talking, hoping they will listen. Autistic people are talking about everything from language use to sensory integration strategies to the damage caused when people insist on eye contact. Autistic people are talking about the effects of therapies and the effects of media portrayals and the effects of autistic community.

But as any speech-language pathologist can tell you, communication requires at least two partners. And so we are begging our non-autistic conversation partners, some of whom are parents and professionals, to really notice autistic people as folks with a voice, and opinions and experiences that are our own. Notice when we are not invited to present at conferences. Notice when we are not quoted by the media. Notice when we are being talked over when we do speak up.

Because honestly, we could use some allies. The privileging of parent voices over autistic adult voices is so pervasive, people often don’t even notice it is occurring, or that it is a problem when it occurs. Even after we point it out. Sometimes repeatedly.

Is that what they mean when they say we use repetitive language?
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