Monday, June 9, 2008

The Obligatory Post-Conference Post

I am still recovering from my presentation last Friday at the Kentucky Autism Training Center's Autism Institute. My thoughts are still a bit scrambled from too much talking, so I asked a friend to "interview" me to get me started up again. These are her questions and my responses. If you were at the conference, thank you for visiting my blog. I'll probably write another follow up later when I've had some time to process everything.

Q: What surprised you most about attendees' response to your presentation?

A: I talked about some of the language that's been used to describe autism and autistic people, including train wrecks, tsunami, empty shells, children who are toxic. I showed the Ransom Notes materials and some of the responses to this from the Autistic community. I talked about Autism Every Day and why I find it reprehensible. I expected, I guess, some anger, some defensiveness about this. Instead, I saw people who found these images as shocking and wrong as I do. I heard gasps and saw people cover their mouths when they saw the picture of Katie McCarron and heard about her murder. Most people had not heard about Alex Barton.

I came away with the conclusion that perhaps I spend too much time reading opinions on the internet. Maybe this has led me to believe in a false dichotomy, something I tend to accuse others of doing. My fears that people would be angry with me for asking them to speak more respectfully, those fears were not realized. Instead, I met a lot of people who just hadn't thought about this stuff before. Maybe some of them will speak up when the organizations they belong to speak in ways which are damaging to autistics. Maybe I will approach groups like this one with a bit less trepidation. Most of them are good people who have just not had experience with autistic adults or been asked to consider these ideas.

Q: What was "different" about this event?

A: This was my third year attending the KATC conference. I've had some issues with it in the past. For example, last year, there was a panel of family members without a single person on the spectrum represented. There also tended to be too many talks with titles like "Autism Boot Camp" and other militaristic names, suggesting either a "war" on autism or the idea that living with someone autistic is necessarily a series of battles. There was a presenter whose husband and children were on the spectrum, and she made a lot of jokes implying that the husband was a "child" too. I didn't care for that.

Part of the difference may very well have been that I didn't choose to attend those types of presentations this time. Sometimes I consider it my responsibility to be there and speak up when I disagree, but for this one I knew that I had my own presentation to worry about and should save my energy for that.

Now I'm not trying to say that we haven't been included or given the floor before. There have been autistic presenters at the previous conferences. These were more of the explaining "what it is like to be autistic" variety, though. As far as I know, this is the first time someone has been invited to take a political stance on some of the things that are done in the name of Autism Awareness. I see that as a huge, huge step forward.

Q: How do you reconcile differences of opinion with people who clearly "want the best for" autistic people?

Q: What do you see as the biggest barrier to getting your point across?

A: I’ll answer these two together; I’ve been thinking some about how they relate. The night before I left for the conference, someone left a question for me, apparently unrelated to the post where it appeared, but regarding why I would equate “treatment” for autism with “hate.” I was tired (and tired of those sorts of questions) and left a snippy answer. The comment began, “This is not a question to start an argument,” but I did not believe this. The reason I didn’t and don’t believe it is that the commenter went on to tell me what I can and cannot do (getting a lot of it wrong) and to attribute a statement to me that I have never said. Also, there was YELLING involved.

I thought about this a lot over the weekend and in relation to my experience with the conference presentation. It’s an interesting paradox for me. On one hand, I express myself well in writing, and not so well at all in conversation. Presenting is a middle ground. I have to talk, yes, and I often get stuck, forget words, accidentally say things I don’t mean, using the wrong scripts or whatever. But it is also a form of written expression, thanks to what I see as the most important accommodation in my life currently, the PowerPoint format. Having the key points written out allows me to relax and know that my ideas will be communicated with or without my oral participation. The ability to incorporate pictures and videos works very well for me, too. In a sense, this is the only time I have both of my “selves” participating, and I think it allows for much less “writing off” than either form alone.

What I mean is that when I try to talk in a meeting or conversation, without using slides or pictures, I am often treated as far less able than I am. When I write a blog post, I am seen by some as far more able than I am. The PowerPoint presentation shows both sides. I doubt that anyone who saw me present would presume to know how well or poorly I can manage my life in all of those areas that get pulled into discussions of high and low functioning. When I do these talks, people see who I am and what autism is in this one particular person—a mix of abilities and disabilities that is not understandable to most people on an intuitive level.

That’s the biggest barrier to me, the disbelief, and the hostility that can generate when people assume they know things they don’t know. Or when they add in their own idea of what I’ve said, along with whatever they’ve heard elsewhere, to what I’ve actually said and then attribute the whole package to me. It’s very frustrating. Asking people to respect autistic people as complete and human and valuable is not the same as saying that autistics don’t need any help. And that seems so obvious, I can’t help feeling that I’m being baited each time I hear that accusation.

When I get comments like that, I always ask the person to read my “For Parents” post. That should be the starting point for any discussion with me about what I do and don’t believe regarding “treatments” and accommodation.

And now, a word from Squawkers McCaw:


  1. Dude, why didn't you do that thing I suggested you do with the "I Bite Your Head" perspective photo with that chick at the booth? 'Cause that would've been cool. This is pretty cool, too, though. Hi, Squawkers! And hi from Burgess, too!

  2. Aha! I have a thought:

    "Treatment" implies "fixing."

    "Accommodation" implies "helping."

    Big difference.

    (Marie S.)

  3. "What I mean is that when I try to talk in a meeting or conversation, without using slides or pictures, I am often treated as far less able than I am. "

    I am the same. I come off as being a bit out of it, you know the far away stare, the lack of affect, monotone, etc.

    "When I write a blog post, I am seen by some as far more able than I am."

    For me I am the opposite as I struggle with writing and I have to work very long to put a thought together, though I know exactly what I want to write, it just doesn't make it from my brain to the screen. When I use video, people can think I'm far more capable than I am in other areas and assume all sorts of things. However, video is far easier for me to convey my thoughts because the picture in my mind makes it to the screen, unlike those elusive words.

  4. CS,

    I think I see what you mean. You reach people at a deep level with your video work. It's your natural language. Writing doesn't capture the full complexity of emotion and thought for you. It seems less gentle and more in-your-face, and people respond as if you were a different person. Inside, you are the same man. Let me know if I am off base here.

    The concept of identity and identities and how we incorporate the false views others mirror back to us, this is one of my interests.

  5. "Writing doesn't capture the full complexity of emotion and thought for you. It seems less gentle and more in-your-face, and people respond as if you were a different person."


    I hate to say this or admit it, but most of what I write, with some exceptions, are basically cut and paste from what others have written. I'll change around a few phrases to convince myself that I haven't been entirely a plagiarizer, but its mostly so I can feel comfortable in my own self deception.

    If I could visualize it for you imagine a man standing. Atop his head is a fast moving series of pictures, like a train. For most, the images are moving too fast and are a blur, but for me they are clear, almost moving in slow motion. I reach up and grab an appropriate picture. I do this over and over again until I have a complete thought. When I put them together, it explains what I'm thinking.

    Words fly above my head at an incredible speed, yet they won't slow down long enough for me to really see them. I will reach up, grab one, then another and when I put them together, they don't represent what I want to say. So, I compensate by finding words of others that I like, put chunks together from various sources to say what I want.

    I don't know if any of this makes sense or not.

  6. I do the same thing, I don't know if I take phrases from other people, but I do have set phrases that I use in conversation. I find it's just easier to use these blocks than to create a sentence from scratch. I really don't know how often I do it though, I'm sure it happens much more often than I'm aware of.

  7. My speech and my writing are displayed in very different ways also.

    When I feel over-stimulated in a situation involving others and conversations and I really want to express myself, I attempt to find that lower more powerful gear where I can more effectively express myself because my thoughts and all the stimulus has become
    overwhelming to me and I'm otherwise very frustrated with being there.

    I can't even find that gear when I'm writing without a lot of effort and solitude but I can almost never find it when I'm talking and when I do it sounds similar to the way I write which is not what lots of people are accustom to so the communication can become very awkward to others as they relate my speech to being much like what they would consider a recording.

    When I reach for that gear (so to speak) around other people and fail (which I usually do when I try )I think of it in a similar way to hearing someone driving an old pick-up truck with what was commonly referred to as a 3-in-the-column manual transmission attempting to shift upward into second gear and grinding reverse. It's real bad sound and an has always been an awkward feeling so I often just don't attempt it.

  8. You listed many reasons of why there still needs to be education on the subject. Sounds like you fielded the questions beautifully and are not giving yourself enough credit.

  9. The link to Sqwawkers McCaw is no longer valid.


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