Wednesday, September 11, 2013

Mother tongue: Orangutans and Autistic education

This view is going to be controversial with both Cure-wing parents and Pride-wing Autistics, but I need to say it.

I do not believe in a cure (cue parents.) But I do believe in treatment (cue Autistics.) But I do not believe in calling it treatment. Nor do I believe in normalization or the ritual sacrifice of Identity. (cue confused looks from both sides.)

I do not call it treatment.

Call it education tailored to Disabled. Those like me. Teaching Disabled to care for themselves as well as they can, we can, and be as self-sufficient as possible, while not being afraid to ask for help. Not being ashamed of being just as imperfect as you, in noticeably different ways. Teaching Disabled to interact successfully with Nondisabled without asking them, us, to sacrifice our identity.

 We have this. Sort of. But it is not good enough yet. And not everyone can access it.

We need to improve our Disabled Education systems. Not just our supports (cue Autistics). Those are important. But so is personal growth. Yes. I support teaching Autistics and Disabled to learn self-care skills. I support teaching life skills. The program I'm in right now teaches those things. I want to learn them.

I've been told I shouldn't. I've been told I can't. I've been told I don't need to.

Our systems are not perfect. They need improvement. That's why I speak out. That's why I write.

Not all education is tailored to Autistics or Disabled. Yes, some of us can learn and thrive in those environments. Yes, we also fall through the cracks. Yes, mainstream education should be available to everyone. Yes. I was mostly mainstreamed. Yes, I made it. But why not have education just for us? We're different. We don't need to be shoved into a mold that doesn't fit. Not all mainstream education is going to work for us.

Some people take the idea of Special Ed for granted, as though it's something we're forced into and need to break free from.

I had to fight to get into Sped. I had to be a serious self-advocate. I've almost been tricked several times into agreeing to less than I needed. I'm overestimated. I'm patted on the head and told to run along and be my eloquent, charismatic self. I have had to claw my way into Special Ed just as violently as some people have had to claw their way out.

I'm not asking anyone to blend in or conform. I'm not saying "fake it." But speak two languages. Speak the language that's most comfortable for you: Aut. Your own voice, your own way of communicating. Be proud of it. Understand it in others.

When you move to another country, it's useful to learn the language that's spoken there. We live in Typicaland. I have spent years learning their language, learning to communicate with them - to make NT friends even though NT is not my mother tongue. To avoid: miscommunication, hurt feelings, misunderstandings - that are nobody's fault. The mere result of a language barrier. To understand NT conversations, so I don't feel like I'm standing in the middle of a group of people who are speaking Martian Trade Pidgin.

Yes. They need to learn to speak Aut. And they're trying. We're helping them. Baby steps. Training wheels. They're getting it, slowly. But why should it be just them? It's 50-50. We work. They work. We can become a bilingual planet.

I am a successful (quasi-successful), bilingual Autistic.

You say: Parents say: People say: "Words. Those words. Why words? Why wouldn't we call this treatment or therapy? Isn't it treating Autism?"

No. It is teaching Autistics. It is Autism-centered or Disability-centered education. It is education for those whose needs are different from the norm. The word Treatment is stigmatizing. It is pathologizing. You treat cancer. You treat AIDS. You treat sprains. You do not treat me. Not unless I am sick. You do not treat me for being who I am. You do not treat my personality. You teach me.

I want to be taught.

I am afraid.

I don't want to set my house on fire because I forgot I was cooking.

I don't want to get run over. I don't want to be drained of finances. I don't want to be locked in a basement or raped or kicked out of my home.

I don't want to miss half of a conversation because it is all subtext.

I don't want to make a constant fool of myself for misinterpreting someone else's culture. ND (nondisabled) culture. I don't want to embarrass myself over a linguistic error. In Japanese, you can accidentally call a young girl an orangutan by a simple change in the length of a vowel.

Sometimes I feel like I'm "calling a young girl an orangutan" when I talk to NDs. I don't want to. I don't want to say something innocent in my language that has a ridiculous, or even offensive, meaning in the ND tongue. Among my own People, it might pass. But among NDs, it's lost in translation.

I have come a long way. I have learned a lot. I have done most of this on my own.

I have trouble with sensory processing. Lots of Autistics do. They have programs for that. Auditory Processing Therapy. Sensory Integration Therapy. But don't call them that. Call them Sensory Integration and Auditory Processing Training.

Semantics? Maybe. But semantics can be important. The words we use both reflect and reinforce how we view the subject. Treatment = disease = broken. Therapy = pathology = needs fixed. These words come from people who think that I am a disorder, and they make people think that I am a disorder, and those people use words that make people think that I am a disorder. It is a snake eating its own tail.

I am not broken. I am not a disorder. I do not need fixed.

I need to be taught. Teach me.

I am your child. I am your student. I am your daughter.

Teach me.


  1. I like this. It is very reasonable and I like reasonable things.

  2. Beautiful! I constantly tell my son I don't want to change him, if he wasn't an Aspie he wouldn't be him. But I do know many parents who try to force their Aspies to act and be NT, and it just makes their kids have even more meltdowns. So sad when I see that.

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  4. Beautiful! I constantly tell my son I don't want to change him, if he wasn't an Aspie he wouldn't be him. But I do know many parents who try to force their Aspies to act and be NT, and it just makes their kids have even more meltdowns. So sad when I see that.

  5. I really have a lot of respect for you, Kitt. You show an understanding of a lot of things beyond your years.

    As an autism parent, I have to try to get my daughter the best tools available to operate in the world we live in. I don't *want* to change her or "cure" her -- but as a parent, it is my job to make sure she has the tools to thrive. Would it be wonderful if everyone just understood? Sure. And I will do my part to keep educating and advocating toward that goal. But the reality is -- as you have expressed so well in your post -- that we are not there yet.

  6. My beautiful 10 year old daughter is Autistic. She was diagnosed at 2 years old. I just came across your blog today and I'm so happy that I did. My girl doesn't need to be "fixed", if anything, I wish I/we all could be more like her. I don't want her to be forced to "fit in" to a NT world. I want her to flourish and be her true self. I will fight for her and work hard to make sure that no one stifles who she is because it doesn't fit their cookie cutter idea of normal. Thank-you for your blog. Looking forward to reading more!

  7. I just found your blog and I plan to continue reading and sharing. What you say is so important and you say it so well! Your words will help build that bridge between the "two languages" or "cultures". I wish we could make your blog mandatory reading for all school teachers and aides - anyone who might be placed in a situation where they are working with students!

  8. You write so eloquently and so simply. I truly love your blog. Your words are helping me understand how to be a better mother, advocate, and person. Thank you Kitt.

  9. Hi Kitt,

    I just found your blog through the National Autism Association's Facebook feed. They posted your blog "What I Saw". We just got done picking out an integrated preschool for our 3 year old son with ASD. We saw firsthand atrocities committed on nonverbal preschoolers in the name of education, the likes of which still make my stomach turn.

    My dream is to one day sit down with my son in a room and have him describe to me what he is seeing and hearing; for him to be able to describe to me how he perceives the world so that I can better understand his version of our world.

    When we first got Ryan's diagnosis we were told that his skills are such that he may "outgrow" his diagnosis and be declassified. That this could possibly happen during elementary school. And I will tell you, honestly, that the thought of him being neurotypical in appearance was relieving to me. We could help him outgrow his Autism. You have to forgive me, I am just a mom and just a human. I didn't know better. I wanted him to have the best life ever, and the only life I know is neurotypical. I thought if I can help him be like us, I can help him be successful. It was naive and worse than that, marginalizing. And so unintentionally so.

    After interacting with my son, post-diagnosis, I've realized that he's wired differently. That he won't "outgrow" his disability. He may learn how to trick everyone else into not seeing it, but it will always be something that he has to regulate. My fears for him are that he will learn how to have a conversation, when it is appropriate to laugh, etc. without ever fully feeling the joy that comes from that interaction, without actually thinking that the conversation was funny (or sad, etc. etc.). I don't want him to fake it for the rest of his life to make the rest of us "feel comfortable".

    Thank you for writing and talking about your life and your perceptions. I am still trying to figure out what I need to do to be his best advocate. Your stories are helping.