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?

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4 thoughts on “Why I’m not Blue.

  1. Yeah…being HIV+ is worse than my ASD (and I have a diagnosis of “Autistic Disorder.”) At least it is for me. My cousin has profound, low-functioning ASD and that kind of autism definitely isn’t desirable (can’t talk, in diapers, no social or academic skills, seizures, etc.) People like my cousin definitely need some sort of “cure” (and I use that term very loosely) b/c he is completely non-functional. But that is a completely different topic…

    I also took all honors and AP classes in HS; I had a 4.6 GPA but I had no support and my mother told me to get my GED (and shortly after I got my GED she kicked me out and moved to Texas or wherever she is now).

    I’m going back to college in the spring so, hopefully, things will go right this time. I’ve attempted college before but always failed b/c of complete lack of support and understanding from college. And now I am going to be physically disabled on top of everything else (I now have to use forearm crutches to keep the weight off of my bones b/c they may collapse under pressure).

    I will be attending a more liberal college and, obviously, liberal colleges appear (in my experience, anyway) to have a better understanding and appreciation of disability. Technical colleges are the worst, in my opinion: they are basically just like high school (which I could not tolerate) except that almost everyone smokes (and I cannot stand the smell of nicotine).

    I don’t know how to really accommodate autism in college but I would ask for this: to always be allowed to work alone (never in groups), to be allowed to communicate with the instructor via e-mail instead of verbally…this would suffice for me.

    And as for everything else I don’t really know either: brain injury and seizures often cause difficulty in reading so I can probably get my books on audio. Using forearm crutches is basically like walking, except much more slowly, everyone stares at you and elevators are always preferred over stairs. And I avoid classes that might have triggering content about extreme abuse history…

    I think I’ll be okay with this “stuff” in college but b/c of social problems (autism) I have great difficulty being a “self-advocate” and asking for what I need: this part of it is lost on me. Maybe I’ll just write an e-mail to the disability resource center explaining things first and take it from there…

    • I’m glad you commented!

      I know I’ll be asking for extra time on tests, preferably in a separate room. I’m nervous about asking about accommodations but I know what to ask for this time.

      They will probably want current medical documentation forwarded to them. Have a Doctor (I don’t remember if you have a regular PCP or if you are having to use clinics because of money?) write a note saying that beccause of such and such a disability, you will need these accommodations. The major complaint I’ve heard is that unless you have this they might not follow through is why I mention this. It’s kind of icky to me that it’s considered needed, but it is.

  2. Pingback: Why I Reject Autism Speaks | Cracked Mirror in Shalott

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