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Sunday, June 29, 2014

The harm of us vs them; to @SesameWorkshop

When I was a child, I wasn't taught about autism. It wasn't a topic spoken about. Not hidden, but not in the public view either.

When I was 13 or so, I was told, that I probably had Asperger's. I wasn't told much, but I was told some. I was given enough that I could research online.

What ended up happening, was that I went into neurodiversity. This was a different form of being. There was nothing wrong with me. Some people were like this, and other's weren't and this was fine. But what also ended up happening, was that I said I wasn't disabled, denied my impairments, and pushed away any relation with autism. I wasn't like those people. I couldn't see the association, the relationship, between me and the people who couldn't speak for years, if ever.

Eventually, as I grew up, I was able to learn that I am impaired. I was able to learn what my impairments actually are, and I was able to see, wait, this is how I am autistic. And I was able to understand how I'm autistic, someone with a speech delay is autistic, someone with partial speech is autistic, and someone who is nonverbal is autistic. I was able to understand how the traits vary, and yet are so similar, and relate when I read writing by a wide range of people. At this point, its easier for me to relate to someone who's nonverbal than someone who's where I was a decade ago.

But, while I'm telling this story, you might wonder, why this is relevant to someone like Sesame Street. This separation. This us vs. them, is harmful, to everyone involved. I didn't have guidance to learn this. I needed to learn it on my own. I needed to learn how I relate to others, while the information I was getting was pushing me in the other direction. The people who cannot speak or take care of themselves are different than those who can and they are different than the "normal" neurotypical people. That's the overarching view of autism information being shared.

This us vs. them, ends up leaving people without help. It ended up leaving me without help for years, and I'm struggling to get it now. The years of me thinking I was unimpaired, only "different", I knew, and yet didn't do many things which would have helped because I was separate. I didn't need help like those people in my mind. This left me farther behind when I realized what was actually going on. Now, other's view me in diagnostic stereotypes, because of the us vs them fight going on around me of the same, again, denying me help.

It ends up with people getting abused, mistreated, and fighting a world of stigma. People understandably become unwilling and unable to turn to others, when others are right there. Other's struggle along on their own, never managing half of what they could do if anyone would treat them the same as the others around them. It leaves autism, in a world of its own.

Instead of saying autism, all of autism, is a thing, which occurs, a thing which people do need help for, and a thing which isn't a tragedy of burden, it leaves, us, the autistic people. And yes, we're both autistic and people behind.

There's one group, at the center of all of this. There's one group, which leads the charge of how autism is a burden to all the families, to the world! And how it doesn't matter if we're trampling autistic people in the charge. There's one group which says that if you're able to speak, you're separate. That groups people, and in doing so takes the voices away from members of all groups.

You've probably heard lists of what's wrong with Autism Speaks. The list is long: dehumanizing; spending little money actually on helping families of autistic people (4%); stealing writing from autistic people; the "I am autism" video; not having one autistic member of the board of directors; things like someone in leadership talking about the only thing stopping her from driving off a bridge with her autistic daughter was her neurotypical daughter at home on video; generally denying anything about adults with autism, or our ability to do anything successfully...

These all cause pain directly. They also build a culture of fear, hatred, and fighting. People are afraid of those of us who are autistic. Why wouldn't they be, when they're taught that the only thing we are are burdens who are unable to ever contribute to society and who meltdown at the drop of a pin. And people are becoming more and more aware of autism than when I was a child, and not in positive ways. Now autism is a bad thing. It's a bad word. It's an insult.

All around autism; there's hostility and fear, in ways that we're needing to unite against in order to try to overcome Autism Speaks. We're needing to try to teach that every person deserves to live. We're needing to try to teach that every person deserves to be able to be treated with respect. We're needing to try to teach, that every person. Everyone, deserves a chance.

Teaching about autism is a notable goal. There are many reasons to want to teach children about autism, from classmates growing up, to seeing behaviors that would be pointed out in public. However, teaching about autism should be done in a method that promotes equality. We deserve our voices, whether spoken, typed, or pointed.

Many good things are taught through children's television. This could be one. Autism Speaks, while the biggest name in autism, is one who isn't there for those who are autistic, and is that toxic.

Please Sesame Street, do this another way.

Written for the "#EducateSesame" flashblog

Wednesday, June 4, 2014

Book Review: The Speed of Dark

This book seems to be popular right now, its a book about an autistic character (and a verbal autistic character who isn't talking about Asperger's even rarer in terms of what gets written about), and I read it earlier this week. So, it seemed straightforward that I should write about it, seeing as I had some strong opinions, both positive and negative about the book.

Overall I think the book had the most accurate portrayal of autistic character I've read in fiction. It did get stereotypical at times, but less so than usual when dealing with autism and fiction. The characters also were actual characters, not just "lets read the DSM criteria and call that a character", as well as were actually allowed strengths, even if the strengths were stereotypical of autism. Things like sensory processing were actually taken into account, as well as stimming being helpful to the individual. Beyond just the autism itself, there was also getting into how people treat autistic people, the fact that different people have different views about their autism, and those sorts of details.

The number of details was impressive. The author mentions in the section after the book that she has an autistic son who's in high school now, and it shows that she actually knows something about the spectrum. It wasn't just someone writing about autism because its the current popular subject. That was definitely a good thing.

But, of course, it wasn't done as well as it should have been. Overall my views was that they took a good thing and they ruined it.

(After here, there will be plot spoilers, so here is your warning)