Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Zisk, Alyssa Hillary. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Zisk, A. H. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from

Sunday, February 10, 2013

Ableism is to blame

Trigger warning: murder, lots and lots of ableism.

I saw a girl post an apology for the fact that she has autism, that she will never be what her parents want her to be. I responded to her with the usual message of it's ok, it really is, autism isn't the end of the world. That was for her. This is for me.
This is why things like the AutismPositivity flash blogs are needed, this is why things like Loud Hands are needed,  this is why Autreat and Don't Mourn For Us and Autism Acceptance Month are needed. A teenager was diagnosed as autistic at age thirteen. Her parents didn't tell her for two years. And when she found out? The picture she had of autism made her not want to accept her own neurology. She believed that autistic people were straight up freaks, and that as she was not a freak, she could not really be autistic. When she came to terms with the fact that she really is, in fact, autistic, her reaction was to try to make herself normal. She tried to beat her own brain, to make herself be like the rest of her family, and she couldn't do it. Of course she couldn't, and people were wrong to ever send the messages that led her to try. A brain that is wired differently leads to being different. It's not that complicated, but people are obsessed with normalization. Whatever lip service we may pay to diversity, we do not really want it, and it hurts to look at that fact. It hurts even more when you are outside the range of acceptable diversity, as I am, as she is, as every Autistic person and person with autism is. 
And it has devastating effects, far worse than the actual impairments of autism. No impairment is the reason that we are called freaks. No impairment is the reason that we are bullied (no, flapping our hands is not an impairment, nor is it anything more than a convenient excuse, a difference that does not impair anything.) No impairment is the reason we are told that we have no human dignity. No impairment is the reason doctors still tell us to consider alternatives after establishing that the only alternative is death. No impairment is the reason that she was ostracized from her own family. Their reactions to it, society's reactions to our impairments and our simple differences, are the reasons for these things. Ableism is to blame. Ableism is to blame for the high rates of depression that we face, likely for her specific depression. Ableism is to blame for our high rates of PTSD. Ableism is to blame for people considering it acceptable to murder us, and to give the sympathy to our murderers, not to us. Ableism is to blame for the fact that when the same people used the same techniques to try to cure autism and queerness, these methods (slightly modified, but the cited study is often that old one with electric shocks) are still seen as the gold standard of our education while their monstrosity has been (mostly) recognized in their use against Queer people. Ableism is to blame for so much, including the numbers of us who think these things are not the fault of systematic oppression but rather a reasonable result of our disability.
Autism has no cure.
To me, this is a relief, because I know what would happen if there were one. To others, this is a horrifying thought, the realization that they will be like this until they die. I understand that the are people who, even in the absence of ableism, might still wish not to be autistic (Just for themselves, no, this does not mean you can decide this for anyone else ever.) I can even fathom some of the reasoning they might have. But the vast majority? Ableism is to blame for the ones who want to be cured because their family rejects them, because society rejects them, because they are seen as freaks, because they have been told that autism will prevent them from reaching their goals even when their goals and their actual impairments have no relation. When I see people blame these things on autism, I want to scream, and when autistic people accept these notions, I want to weep.

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  1. you speak the truth and it breaks my heart.

    for her, for you, for my girl, for all of us.

  2. Thank you.

    I was not unlike that teenager when I was diagnosed. All the things I thought I knew about Autism were really bad and I was depressed and struggled for years.

    This is why it is the case that I was diagnosed 11.5 years ago but am only now coming into my voice. I see others -- John Scott Holman springs to mind -- who are diagnosed and within less than a year are powerful, dedicated, strong voices. And I marvel. How did they do it so fast? How did they come to terms ... and beyond ... and find their voice in such a short time?

    I wrestled for nearly a decade with being told I am Autistic before I was limp with exhaustion from the fight and ready to give in. It was a long, arduous journey to come to the point where I am now, the point where I have a voice and know what I want to say.

    The path from diagnosis can be really hard and there weren't many supports in place for me. That's why I want to help build the supports for the next generation. I don't ever want anyone to go through what I did.

    Thank you for being a support for others, Alyssa.

  3. Parents have to take responsibility. They have to actively battle the stereotypes. Advocates - like you, Alyssa - are marvelous. But until parents realize the depth of their own internal prejudices - which is painful and hard and unpleasant - they will unconsciously or knowingly promote negative stereotypes. That cause their sons and daughters to grow up hating themselves, hating their siblings.

  4. I've been reading a lot more about autism in the last few months as I'm thinking of writing a book. What you say here Alyssa has much in common with my new focus on autism (aspergers in my case) and how those of us with it have problems. While reflecting on my 20 plus years of trying to find my place, going from job to job, girlfriend to girlfriend etc. I realized that the common denominator is other people. That is to say that all the utilitarian necessities of life I can handle. In fact, I've spent so much time alone in the wilderness over the years I'm sure I'd do better than average in a deserted island type of scenario. Meanwhile, our neurotypical majority ruled society has its own way of doing things. Unfortunately for us it favors a very "cookie cutter" or "assembly line" approach to categorizing things. This along with a seemingly inescapable hierarchical mindset results in a society which tends to label everything as either "good or bad", "better or worse", "desirable or undesirable". As you say "Whatever lip service we may pay to diversity, we do not really want it, and it hurts to look at that fact." Our primitive reptilian brain is designed to quickly label everything for survival purposes and most people don't use much intelligent thought during this process. Easier (or lazier) to just avoid bad and seek good. The problem is, nothing is that simple. Good or bad compared to what? In what context? Who died and made who judge? Some things are just different. The forces we autistics have to deal with are the same basic forces that lead to things like racism, sexism, homophobia, personification, religious persecution etc. It really comes down to how much understanding, compassion, and empathy people have. Of course those of us with "invisible" disorders like aspergers or A.D.D. have the burden of dealing with skeptics also. It's an interesting fact that the number of people diagnosed every year as being on the autism spectrum is on such a rise. Maybe someday WE will be the majority and the way society operates will completely change.

  5. Except for the fact that the original poster probably wouldn't want it done...I really want to post that picture on the Autism Speaks/Age of Autism/Generation Rescue facebook pages and say "See this?! THIS IS WHAT YOU DO TO US when you paint autism the way you do. THIS IS YOUR FAULT. You don't make people's lives better; you convince them that they can never, ever be good enough, or happy, or loved."

    1. They probably wouldn't. That's why I didn't link to their post or say who they were here.

  6. Fantastic writing and I fully agree with you. I have been reading a few of your blog posts and like what I read. Feel free to check out my blog sometimes as I write about some similar topics and we have similar views. I write an Ableism for beginners blog post as I could not find one. I now refer people to it as so many people in my life have not heard of Ableism and the severely damaging effects it has on disabled people.

  7. I found your blog while searching for tips on how to handle ableism as the parent of an autistic child. (She's six. I'm not infantilizing an adult, she's legitimately too little to self-advocate a lot of the time.)

    Thank you. Your blog helps, if not with my specific problem today, with life in general. My little girl is beautiful just as she is. There's nothing to cure. There are some behaviors to teach her to modify so that *when she chooses* she can behave in a more expected manner, but even when she chooses not to, she's still wonderful.

    She's smart. She's talented. She's kind and funny and charming. She's autistic.

    Thank you for validating the fact that she doesn't need fixing.

  8. I've been yelled and punished for stimming my entire life one day I was forced outside cause apparently something that's literally an part of my internal thoughts and was also an part of how I used to get to sleep at night can just be purely delegated to outside you know what was worse that when I was outside I started selfharming cause that was the only way I felt like I could legitly protest back then their constantly telling someone to seek help then depict that person just being forced to act like everyone else and depict that as helped of course my self harming became just normal cause of that and everyone around me made the fact I was now overloading all the time and my sleeping habbits were fucked up sorry mayby I should have sensored that and most of my immediate family put themselves first ALL THE TIME I had to stay stile and listen to some shit who wouldn't get out of my room even when I told him to lecture me after some of the abusive things they did. That's been my life even now and I'm kinda numb to it event through I probably have ptsd now but I can't express that and now I have to actually wait to moveout.


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