This is Autism   11 comments

What follows is my contribution to the This is Autism flash blog, where many wonderful people have pieces that bring to life the beauty of divergent neurology. They are positive and glorious and you will be enriched by reading them.

However, bear with me while I am slightly less sunny. I am recovering from a couple weeks of trying to be a part of the world and getting smacked down with one access fail after another. I am cranky.

Suzanne Wright is the co founder of Autism Speaks along with her husband Bob. Last week, she wrote a vile fear mongering piece of hate speech, which is not shocking because fear and demonization is Autism Speaks bread and butter. They have used fear and money to build an empire bent on wiping autistic people out of existence. What shocked me was that this piece struck a nerve with so many people who had overlooked Autism Every Day and I am Autism. She explained that autism is living in fear. In that we agree, but while her fear is of naked hopping autistic refrigerator raiders making parents lives dreadfully inconvenient, my fear is of people, fueled by the rhetoric of the Wrights and others of their ilk, who want me dead.

Ms. Wright, This is Autism, the Autism you helped create.

This is Autism: Autism is having to work too hard.

The cultural pressure to pass is so intense, my failed attempts sneak up on me. Being natural or relaxed in public is impossible. While I’m a few generations too old to have been subjected to ABA therapy, the ABA paradigm colors how the world views us. Indistinguishable is good. Anything else is dangerous.

This is Autism: Autism is having needs treated as preferences.

Recently, I was to be involved in a project, about which I was very excited, designed to further the empowerment of individuals with developmental disabilities, but my statement of access needs, in writing, through proper channels, was ignored. I was not warned ahead of time that the environment would contain the very seizure triggers I specifically mentioned in my registration. I tried to tough it out, but after three seizures (not counting absence seizures) in less than two days, I had to admit defeat. Understand, I was dealing with people who are professionals in the field of developmental disability. These are the people who should already get it. By no means is a seizure disorder autism, but I do not doubt that my autism is why my needs were not taken seriously. It has happened too many times to be a coincidence. Autistic needs are viewed as wants, then labeled Behaviors. We are expected to control those Behaviors, or have them trained out of us.

This is Autism: Autism is having to explain myself over and over when explaining is the hardest thing to do.

When I use verbal speech to communicate, understand I am meeting you considerably more than halfway. I am expending energy that takes away from my responsibilities and loved ones. My reserves are not unlimited. If I then have to explain the same thing over and over again because it “doesn’t make sense” to you when I “look normal” or because you “know this other individual with autism who does that just fine” you insult me.* If you cannot give me enough time to form words without talking over me and (incorrectly) finishing my thoughts, you are disrespectful.
*actual quotes

This is Autism: Autism is knowing no matter what, the majority of people I encounter will always view me as a little less than fully human. That is your legacy, Ms. Wright. In eight short years, you changed the dialogue surrounding autism. That is powerful, and impressive, and so very wrong.

 

 

Posted November 18, 2013 by itsbridgetsword in Uncategorized

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11 responses to “This is Autism

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  1. Thank you, again, for sharing. I love your blog because it helps me to remember that autism comes in many forms. As a teacher, it is important that I keep it in mind.

    On the let’s-pretend-I’m-not-a teacher note, if you want me to punch someone in the face, I will. :)

  2. hello,i get your blog.i have aspergers. married 13 years.we have 2,boys and 1,girl. i take part in a lot lot research from universities.if you would like to e,mail me please do

    e.mail mkentdad12@outlook.com

    mark________________________________ > Date: Mon, 18 Nov 2013 19:18:42 +0000 > To: mkentdad12@outlook.com >

  3. Thank you for these words, and I’m sorry people are so damn clueless. As the NT mom of an autistic kiddo, I treasure the experiences you share, and will do my best to be an ally and try to teach those in my world the realities of autism. HUGS!

  4. Reblogged this on Walkin' on the edge and commented:
    “Autism is having needs treated as preferences.”

    A little understanding can go a long way…we need more.

  5. Thank you for speaking about the culture of needing to pass. My 22 yo son must pass and explain over & over and it’s exhausting.

  6. Thank you. Yes especially on the needs treated as preferences.

    (and when I wrote mine, you’re one of the people I thought of when I wrote about autism being love. Sometimes love looks like telling people hard things that they don’t want to hear, because they need to know. People need to read this.)

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