Rockland Autism Symposium

Last Thursday, I attended the Rockland County Autism Symposium, both as a self-advocating autistic person AND as a representative of Yad HaChazakah, a non-profit organization dedicating to empowering the disabled members of the Orthodox Jewish community. I have the honor of serving as their secretary. Mostly, though, it was for me. I want to stress that. I enjoyed myself and I felt I learned a great deal, so I'm very grateful I had the chance to attend.


There were four main speakers, all discussing important things such as state financing for programs for the disabled (it keeps decreasing) and a move to go from group homes to family care and from sheltered workshops to jobs in the competitive workplace. Those doing apparently believe these measures will be cost-saving and appropriate to all. I disagree on both points. They are appropriate for some, and there are plenty of autistic adults who, in fact, hold jobs and live independent lives, but there are others who cannot - an elderly person may not have a family available and even a "high functioning" person might not have the coping ability to work in a conventional setting.

For example, I live with my husband and maintain (to varying definitions of maintain) a household. I also have held part-time jobs for extended periods. My last job ended about a year ago, probably due to the same budget cuts mentioned above - I was a cook in a group home. I find this ironic. I did have meltdowns at work, sometimes caused by work and sometimes for other reasons. But they did not cause me to lose those jobs - the one previous disappeared because the poor economy caused the business to fail.

Another talked about donating brain tissue for research purposes, framed as finding a "cure." This went over very well for that audience, which consisted of family members and educators of autistic children. The first speaker had actually asked for raised hands - who had an autistic family member? Who had one who was an adult? (I raised my hand because my oldest brother is non-verbal and also 59 years old.) Who was an educator? Of adults? (My special education certificate is both unused and 25 years old, so I kept my hand down.) And then he stopped until a young man caught his attention and asked about "how many self-advocates." I raised my hand, as did he. We got applauded, but there was no one else. And Josh left after the first speaker. So, just me and I wasn't prepared to carry that burden or confidant in my ability to do so.

Anyway, these are people who care for autistic children and adults and want to have "normal" children or "successful" graduates. I don't blame them. They're looking at the problem out of eyes of love but also from the outside. So a "cure" is a great thing. Even if it means losing out on people who see/feel/know the world in a different way. To lose the Temple Grandins and Bill Gateses and Albert Einsteins.

And me, although I'm just me.

There was a presentation about Applied Behavior Modification, without a mention that this is controversial in the autistic community, including a touching scene from 25 years ago with an institutionalized adult, where the presenter taught him basic and simple sign language, and he picked it up so QUICKLY! Not that he was taught grammar or sentences - just a verb (to drink) and a noun (cookie). But the presenter was very proud. Of himself. And he should have been, in that he enabled this man to communicate, but it felt like he was talking about a trained monkey instead of a man trapped in a world that didn't listen to his means of communication.

I do admit to missing most of this because I spent a lot of it meeting people - a couple of legislators, and that self-confidant self-advocate. So I shouldn't judge from the last ten- fifteen minutes. Except. Presenter believed autistic children should have intensive therapy to modify behavior and this is one of the controversial things. I've heard stories of 40 hour weeks. For preschoolers. To change or eliminate behaviors that neurotypical people don't like.

I'm so glad to have been diagnosed so late in life. Never was a factor for me.

There was also a presentation about a program for transitioning adults with autism to independence if possible, talking about life skills and relating to other people. Useful and important. They are also talking about transitioning to retirement as well. I enjoyed that, to a large degree. I'm  about to turn 51, and while I expect to remain independent for a long, long time, and to not need accommodations that I can't actually ask for, I know things will change for me.

There was a lovely kosher buffet available for lunch, of fresh foods. The selection was minimal, but delicious.

The last presentation (I admit to getting there late because I was talking to the friend who arranged my attendance) was talking about life skills, and made a point that A. "behavior is communication" and that B. the autism community exists. He was also charming and funny - an excellent speaker in many ways.

However...there were moments. He clearly assumed that no one in the audience was autistic (not unreasonable since out of a couple hundred, there was me). He also tried to show how our wiring was different by using the example of faces. First there was an animation of a bunch of tiny figures in a square, all doing something - lots of movement and activity. Then there was a picture of a portrait, a painting of a woman's face. And how an autistic person would be more interested in the former. Except first he animated the portrait, too - making it rotate a series of painted faces to make it more clear.

And then he said that with proper therapy, you could change the behavior so an autistic person WOULD track the faces.

SO many problems. 1. Yes, given an animated vs a non-animated picture, of course I'd go to the animated one, until I realized it was a loop and therefore boring (also, it was too far and the figures too small for me to know exactly what they were doing, and there was a lot going on. If there'd been time and no distractions, I would have stared at the different people to figure out what they were doing, but that wasn't going to happen, so it was mostly a blur. And I sat close to the front, too.) 2. The pretty bright colors, the movement and the relatively simple single images of the rotating portraits would certainly have gotten my attention. Would have been the same if it had been paintings of shoes or dogs or houses or flowers. So he chose bad examples in the first place.

I don't understand this...focus on faces. I mean, I know that NTs always track faces even as babies, and that that's important to them, but I don't understand why it's so important for us, or why it's bad that some of us find other things more interesting or as interesting. Sometimes, it's just confusing and it's often just, you know. A face. (And yes, I can see faces in houses and cars and root vegetables and all that. I have functional eyes and imagination. So?)

I know some autistic people find looking at faces uncomfortable, but in my case, they're just one other thing to look at - more interesting than some things, less than others. And why is it important to change that? To read emotions? But then I'd spend my entire attention trying to read the emotions and miss what the person was saying. How is that good?

This was the problem - all of the discussion was from the outside, from NT people who, I believe, really, really care and want to help, but who didn't try to see it from the inside. Who only talked about behavior, not the sensory issues that might cause such behavior, and how to work with them.

Example - tooth brushing. There are a lot of reasons a person might have poor oral hygiene, but a big one is that many people find the feel of a toothbrush to be very, very unpleasant. Others might feel that way about the texture of toothpaste or its taste. How do you change that with behavior or the knowledge of the prospect of cavities? Wouldn't it be better to find an alternative way of cleaning teeth?

There was no acknowledgement that an autistic person might perceive the world in a different way, or simply become overloaded with emotions and sensations and be unable to focus or function. There was no presumption of competence (except maybe the transition program.)

The only autistic person they have ever had speak was Temple Grandin, who is an amazing person but she is not the only autistic person who can speak or advocate for us. Most of us aren't amazing. But we aren't Rain Man, either. We're just people. But people who deserve to have a voice.

They also didn't actually talk about adults much, even though it was presented as such. In large part, this is because the vast, vast, vast majority of the research is about children. Also, the people there were mostly there for their children. And, of course, other than Grandin, autistic adults are pretty invisible. Either they're like me - able to look NT with differing amounts of effort - or they're like my brother - in institutions or group homes, away from the public eye.

And, speaking as a "highly functional" person (meaning I'm very verbal and can pass) - it's tiring and I don't know how to stop. I actually thought for a long time that the "act" was that I was a "good" person because I had to think about proper behavior all the time. I'm not a bad person. I'm just different.