Why I’m not Blue.

I see a lot of “light it up blue” stuff being posted around the net today. It makes me sad, really. See, The light it up blue campaign is a project of Autism Speaks. Their name is Ironic, considering they do not have any Autistics on their board, and one Autistic on ONE advisory committee.

I am an Autistic Adult. I have an Asperger’s Dx. But any time I say this, people say things like “Oh, but you can’t be, you talk!” or “But you have so much to say!” This is particularly a prevalent response online, where I do communicate better. I sometimes hear it from people whose only experience around me is hearing me give a talk, not cognizant that there’s a huge difference between public speaking and reciprocal communication.

If they stay around long enough, though, and they know what Autism actually *is,* they get it.

Thing is it’s pretty rare for people to actually get what it is. They are given imagery and little information. Puzzle pieces, Statistics, and fuzzy photos of kids looking anywhere but the camera. They are told that being Autistic is somehow worse than life threatening diseases- which, to be honest, is bad on multiple levels- I wonder what my one friend who is both Autistic and HIV+ thinks when the advertising compares one part of her life to another?

Recently I posted a video on tumblr that Rethinking Autism did called “Autism Support Group.” It had all the usual things we hear said about us- How it seems like we aren’t there, that we don’t display affection in typical ways, That we just “don’t get” school. Throughout, an Autistic adult responds to these comments, only to be ignored and unheard by parents. Thing is, these are comments we hear about ourselves, and about children who were like we were as kids, all the time. The comments could have been lifted from so many parent support groups around the nation- possibly around the world.

Another thing is that it’s always children that are mentioned. The majority of the leaflets and flyers that do feature Autistics (or models) instead of a puzzle piece feature children. “These children,” “Help a child,” or “1 in 100 children” is mentioned. Thing is, it’s NOT just children. There’s no follow through on the notation that Autism is a life-long thing, just a margin in the notes.

The exception is the speculation. “She will never get married and have kids.” “He will never hold a steady job.” “My kid will never go to college.” While these things might be true for some Autistics, saying it’s true of all of us- or rather, all the 1 in 100 or 110 or 160, whatever number you recognize- is just an outright lie and speculation. The same speculation that had my IEP team pressure my mom, saying “She’ll never go to college. She’ll probably never graduate high school. Stop filling her head with the idea that she should pursue advanced classes.” My mom pulled me out to put me in first cyber school then Christian school, and never bought into what they told her about me.

I eventually went back to public school, and I graduated high school in 2006. In 11th and 12th grades, I even took Advanced Placement English classes, and got a perfect score on the AP English exam. (They thankfully didn’t have a spelling section.) In fact, had I not had a nervous break down- inconveniently after the school had pulled my support services- my senior year, I would have been ranked and recognized as such at graduation.

This didn’t come to pass because of an obsession with curing me. It happened because my mother supported me unconditionally. (Her second and now ex husband is a different story for another time.) She knew I was anxious and distracted in school, and that they refused to let me pursue my potential. So she arranged it that I could, and in an environment that suited my changing needs. She encouraged me to get up in front of people and start advocating. She didn’t ever show me doubts about my being able to accomplish things.

A year or two ago, my mother was approached by a parent. The parent was talking about how “of course, you know, you grieve your kid when you find out they have special needs.” This made my mother angry. She responded that no, actually, she didn’t grieve me. I was right there. The extra work was stressful, that is undeniable, but she never lost me so there’s nothing to grieve. She has me, just the way I am- Autistic, Queer, and living with Chronic Pain.

My mother was there when I would melt down and flail wildly- sometimes so much so that she was worried at times about her own safety. She had to deal with people telling her that maybe she should put me in residential placement. She experienced the fear when as a small child I would wander off, one notable time in the Metropolitan Museum of Art in NYC. She heard the comments of “Why isn’t your daughter smiling?,” the “cheer up honey, it isn’t all that bad” and my response of “I’m happy, I don’t need to cheer up.”

Maybe she didn’t see what her second husband put me through, or notice the extra time I took in the bathroom, practicing facial expressions in the mirror so that the cheer ups would just stop. But she never stopped believing in me.

So, you know that Autism exists- but do you know what it means to be autistic?

News and Numbers

First, some Personal News: I’m the new Assistant Director for AWA-Pa Alongside the wonderful AspieTeach, our Director for PA. Please check out the site and let me or her know If you have news or resources for women on spectrum in PA!

Also in the Positive, The Rethinking Autism “Autistics Speak” video (My post is here) Is getting a lot of response. My biological father and I talked today, And he’s been showing it to people at work, friends, and Even his Therapist. They even used it as a way to prompt discussion is session.

In a broader sense, Rethinking Autism has been getting some community Media Exposire. AWA Radio had Dana on, and she’s scheduled for Mad as A Hatter (air date might vary, V’s been ill). If you have a media outlit, please consider asking Dana on! I’ve had several people tell me they’d love to see Rethinking Autism’s latest video have a broader Audience, and I know Dana would love that as well! After all, our message is meant for everyone, not just the Autistic community.

And now, Numbers games:

a couple of articles are out about statistics in the Autism Community. One news Study claims we are at 1 in 91 US kids on the spectrum. This, of course, is including the entire spectrum. What is interesting about these new studies is that previously, we had claimed to have a lower prevalence (1 in 150) than other countries (UK claims 1 in 100).

Another Study Claims the numbers are at 1 in 110 and which has been covered by Left Brain/Right Brain. It should be noted that this was based on parent reports of behavior received via Phone surveys- not the most scientific way of collecting data. It’s imprecise, but it certainly gives us a lot of leads for future studies that will hopefully involve more reliable data collection. Also, some of the parents claimed that their children are no longer on spectrum, which raises further questions. I reccomend the above linked article for a good analysis of this study. (USA Today also covered this story.)

Speaking of all these numbers, left Brain/Right Brain have a good question- Do We Need an Epidemic for People to Take Autism Seriously? This post is a well written and detailed look at the numbers and epidemic centered tactics used by various groups, and comes away with an answer- No, and Epidemic language might even defeat the purpose. Definitely recommend this one.

Rethinking Autism: "Speaking for Myself"

The timing of the recent hullabaloo/AutismSpeaks Fail is amusing to me. Why?

Because the latest Rethinking Autism video is Out!

“Speaking for Myself” features the voices of actual Autistics providing voice overs. I am the Savannah that Speaks twice in the video- once at “Celebrate Neurodiversity” and again at “Why shouldn’t I have a say in laws, organizations, and research that involves me?” Also featured are Dora Raymaker, Steven Kapp*, and David Mahaffey*. The Captioning file was contributed to the wonderful Codeman38. We would have been able to participate in the filming but there really wasn’t money for that.

Rethinking Autism is maybe better known for some of their more Risque (read: actress in revealing garments) videos encouraging people to look at the research. Included are topics on No Vaccine Link, Special Diets, Inclusive Education, and Neurodiversity. Rethinking Autism attempts to comment not only on these issues but also on how celebrity and sex appeal is used to spread misinformation. In their Key Concepts page they give a run down on common misconceptions and direct people to sites containing more information.

On a related subject, Cat in a Dog’s World has an excellent post on the Diagnostic Double Standard in the Autism conversation. Those of us that are closer to the “passing” end of the spectrum are included in the statistics used, but yet when we speak up, too often parents say that organizations like AutSpks “aren’t talking about” us. And by us they mean not only those of us who can almost pass, or even those of us who can verbalize, they also mean “those on the internet”.

There’s an assumption that if you can use the internet, you aren’t “Autistic Enough”. Now, All that says to me is how much of a lack of hope or vision in the parents that think this. Drew Goldsmith, a talented young director who has been featured at film Festivals, is Nonverbal. Dora uses AAC devices to communicate. Carly Fleischman Approached her computer and began to type, and has revealed her life even though for years she was brushed off as “mentally deficient.” The assumption that if an Autistic is on the internet they are less “severe” is bogus.

* Steven and David, or anyone who is better acquainted with either of them, could you give me a link for you?

ETA: This is a personal note: My biological father watched the video. Now, I’ve mentioned he’s always been a little uncomfortable with the MH DD thing, but has become supportive. He watched the Video, and sent me a text message. “Loved the video. You spoke very well. Love Girl.” 😀 😀 😀