Sometimes autistic people hurt ourselves.
This is very upsetting.
“No Emma! You cannot hurt yourself,” I say as though this were a natural thing to remind such a young child. Bewilderment overwhelms my shock. Emma stands up and wanders off, leaving me with one red shoe in each hand.
This was how I responded to Emma’s seemingly bizarre actions. This was how I continued to respond to Emma when she began to bite herself. This was all I knew to do. Remove the thing that was causing damage, except that when that “thing” was her own fist or fingers or teeth I was powerless and defeated. So I begged her, pleaded with her to stop, usually in a loud, panic-stricken voice. Why was she feeling compelled to do such a thing? Was it a deep need for sensory input? Did her head hurt? Was she trying to cope with internal pain caused by some outside source – the daylight streaming in through the window, the heat from the radiator, the clicking noise the steam heat made as it surged through the pipes, was there some noise only she could hear that bothered her, did the fabric from her tutu itch or dig into her skin, or was it something else that I couldn’t see or understand?
Ariane asked autistic friends to help her understand:
Last summer I spoke to my friend Ibby who explained why yelling at Emma to stop hurting herself was not working. ”It’s a lie,” Ib said. She explained that by telling her she “couldn’t” do something, something she’d just done right in front of me, as evidenced by the teeth marks on her arm, was a lie. A lie that made no logical sense. So I stopped saying things like that. Soon after I stopped yelling at her, I realized that anything I said could be heard as scolding, judgmental and counterproductive, especially when done in a loud voice. Now that I have a better understanding of language and how language can come and go, I understand it isn’t just Emma’s ability to communicate, it’s her ability to understand all verbal communication. All spoken language, both hers and anyone else’s goes out the window.
I have to stop talking. This is counter intuitive for me, but it’s key. Stop talking. I have to remind myself of this. If Emma is in the midst of an upset where she has begun to bite herself, no amount of logic will prevent her from biting mid-bite. When Emma is biting herself this is an indication to me that I need to be quiet. Sometimes she will come to me and allow me to put my arms around her in a firm embrace, other times she will reject all contact. In the midst of an upset I have learned the single best thing I can do is – nothing. No words, no physical contact, nothing. I remain nearby and I wait for her to come to me if she needs or wants to. Once she is calmer, I have a chance at figuring out what led up to the upset… maybe. Once she is calmer I can try to see if there’s a pattern so that I can interrupt it next time before she gets to the point where biting herself seems like the only solution.
The single most unproductive thing I can do in the midst of Emma’s upset is to scold, admonish, restrain and judge her. This may seem obvious to many of you, but it wasn’t obvious to me.
Ariane is right, it's like this:
Try to imagine how you'd feel if you mustered up the courage to reach out to another human being only to be shunned, teased or told to go away. Imagine what it would be like to want to have friends and play dates and sleepovers, but you had none. Imagine trying to make friends, but no matter how hard you tried, none wanted to spend time with you, and you didn't know why. What if your attempts to be friendly were seen as acts of hostility? What if you punched someone on the shoulder because you'd seen friends do that and they always laughed, but when you did it, you were taken to the principal's office, reprimanded and threatened with expulsion. How would that make you feel? How about if you joined in a conversation, but the minute you said something, everyone stopped speaking and stared at you with looks of surprise, or worse, annoyance and even anger. How would that make you feel?
Steve is right, it's like this:
Do you know how it feels to be excluded? I do. When I was a kid I would hear the other kids talking about parties or events that I wasn’t invited to. As an adult, I still have people around me doing the same thing. They talk about how they had some fun, did some event or get together that I was never invited to do. Not too long ago someone was talking about how they took an acquaintance out on their boat on a fishing trip and even though I have known them much longer, I have never been invited to go with them. Is it because I am Autistic? Do they care that I feel ignored and excluded?
Ariane Zurcher continues her conversation with Paula C. Durbin-Westby, an autistic woman who sometimes does not speak:
I have read more than one author who opines that without language there is no thought. Nothing could be farther from the truth. Language includes both written and spoken words, as well as picture-based communication systems like PECS. Not talking (and also not writing) does not equate with "not being able to think," "being lost in an unknown world" or anything other than specifically not being able to talk. For some people it could mean a lack of focus on the present moment (how many people are fully present in each moment anyway?) or not being able to think in words, which is another one of my reasons for not talking. But it is not, generally speaking, accurate to assume that because a person can't talk, they can't think. You wouldn't look at someone who has a tracheostomy tube and go "Oh wow. That person can't think!"
Ariane Zurcher talks about what meaningful inclusion of autistic people looked like to her at AutCom:
The AutCom conference was an example, all organizations who say they are interested in Autism and helping those who are Autistic, should follow. Autistic people make up a large portion of their board, Autistic people led more than 50% of the presentations, the audience was at least half Autistic, if not more. At my presentation there were more Autistic people than not, for which I was truly honored by. The conference showed what the world could be like if we work together, reach out to each other, include everyone despite our perceived differences with love, compassion and kindness. Accommodation is less about accommodating and more about getting in touch with our humanity and what it means to be alive and sharing this planet together. Accommodation and inclusion means we ALL benefit.
Ariane Zurcher talks to Chou Chou, "a happy, successful, 58 year old autistic woman". I had not heard of Chou Chou of an hour ago, but now she is one of my heroes. Read the whole thing. This is what she says about diagnosis:
It did not effect me as much as those around me, once I opened up about it. Yes, it was nice to pinpoint what I was dealing with and to put a stop to years of misdiagnosis, but I already knew who I was, and, like most autist adults, had created a multitude of strategy for getting by in life. The biggest thing was that I could be honest: about why I wouldn’t come to a party, why I had trouble following a conversation, why I would stop mid sentence sometimes, or covered my ears, or twisted my fingers, or had a peculiar way of speaking. It was obvious I was under much stress, and that made people uncomfortable, and made them think I didn’t like them much, I think. Now, I simple speak up when I need to, and politely explain my challenges. Everyone relaxes, and tend to be helpful and kind. Sometimes, it makes people talk to me as if I am a child, but I can quickly nip that in the bud! I often say that what I am dealing with is neurological, not psychological. Don’t get me wrong, I’m as neurotic as anyone else, but my neurological makeup is far different from the vast majority of people. I am no better or worst than any one of the unique people roaming this planet. However, I am, it appears, of a certain somewhat predictable, if varied, ilk. I am an autist, and a happy one, and am coming to realize that there may be others rather like me, younger ones, who could benefit a bit from my becoming part of the conversation. After a lifetime of hiding my differentness, this does not come easy, but I believe there is a responsibility that is mine to accept.
I am an autistic woman. Other than that, I am perfectly normal. Aren’t we all a little strange?