Interview with Jim Sinclair
Jim Sinclair lives in Syracuse, New York. He is an autism rights activist, as well as one of the founders of Autism Network International.
Elesia: What issues are of utmost importance to the Autistic community at this time?
Jim: I can think of a bunch of them, but I would say they all basically come down to ignorance about what autism is:
There's more effort, funding, and research being directed at preventing the existence of future autistic people than at supporting and maximizing opportunity for autistic people who already exist.
Many of the "services" that do exist for autistic people are not as helpful as they could be, and often are even counterproductive, because they don't accommodate the way autistic brains work.
The misconception that any given autistic person has an across-the-board "functioning level" means that people considered "low functioning" are denied opportunities for access and self-determination because it's presumed that they're unable to benefit from those opportunities; while people considered "high functioning" are denied supports that would enable them to pursue opportunities, because it's presumed that they're able to function without needing those supports.
Elesia: How can others become involved?
Jim: You mean as allies? Become educated about autism--NOT by reading materials by non-autistic people about how terrible autism is, but by getting to know autistic people. And not just by reading books written by anyone at all, autistic or non-autistic. Meet us and spend time with us and relate to us as equals, not as beneficiaries of special help. Online forums run by autistic people, where most of the participants are autistic, are good places to "meet" autistic people in autistic space where we're allowed to be ourselves, instead of being expected to appear neurotypical.
Live autistic gatherings, such as Autreat, are even better if someone really wants to become involved. I remember I once told someone that I hoped he would come to Autreat, because I wanted him to be able to see me in an environment where I'm not handicapped. In the environment where he usually saw me, I was very handicapped. At Autreat, I'm just as autistic as I am everywhere else, but I'm not handicapped. If you get to see autistic people functioning in an autistic-friendly environment, you see a whole different picture than the typical tragic images of autism.
Speak up whenever and wherever you see anti-autism propaganda, puzzle logos, etc. Maybe carry around copies of leaflets like the one produced by the Autistic Advocacy Group, to hand out when the occasion arises. Write letters to newspapers, television and radio stations, and Internet news outlets critiquing their autism coverage. If you see that a local business is running an anti-autism campaign, take them to task for it, and urge them to do something to promote autism acceptance instead.
Write to your city school board, state and local legislators, and other officials demanding full access and adequate supports for autistic people to participate in education and community life.
Phil Schwarz has written some good stuff about allies. I think you can find at least one of his articles in the library at the Autism Information Library.
*Check Phil's article out by clicking here.
Elesia: What are some a) resources and b) etiquette tips that someone new to the Autistic community may find helpful?
Jim: a) Of course I'm going to recommend Autism Network International.
Also look at autistics.org: The REAL Voice of Autism, Autistic Self Advocacy Network, a whole lot of different blogs that you can access through The Autism Hub, The Autism Acceptance Project.... and a huge number of other resources that you can find if you start exploring those.
b) Be aware of sensory issues, and respect whatever unique sensory needs an autistic individual has. These vary a lot among people, so there are no etiquette rules that work for everyone--other than the #1 rule, which is NEVER ASSUME, ALWAYS ASK. The same thing goes for communication, especially nonverbal communication. Don't try to interpret facial expressions, body language, or tone of voice, because if you don't know this person very well, your interpretations are pretty much guaranteed to be wrong. Don't expect autistic people to be able to pick up on things you don't explicitly spell out for us. We have a whole set of guidelines for Autreat. Feel free to ask if you want to see them.
Etiquette snippets taken from the Autreat orientation guide, which are good to keep in mind around autistic people in any situation:
- Assistive Technology Many people use assistive technology (AT), such as wheelchairs and communication boards, in order to function. Please do not touch or climb on other people's AT devices without their permission. This applies to service animals too! Do not pet, call, talk to, make noises at, or attempt to feed or play with a service animal, unless the handler gives you permission.
- Flash Photography Flashes of light can hurt people. Before using a camera with a flash, you should get the permission of everyone in the area who will be affected by the flash, even if they will not be in the picture.
- Scents Many people are sensitive to scents. Please do not use scented products at Autreat. If you smoke in designated smoking areas, please be considerate about tobacco odors. If you use products that make it hard for other people to breathe, you may be asked to leave events.
- Sound Many people at Autreat have auditory sensitivities and can be hurt by noises that are loud, unexpected, or at a frequency that is painful to the hearer. Please try to avoid making unnecessary loud noise. You don¿t need to go around on tiptoe and whisper all the time. Just try not to shout, bang, stomp, slam, or play music or television at high volume. Activities that are meant to be loud, such as African drumming, will be held in places that can be easily avoided by people who need to avoid them.
- Touching Please do not touch other people without their permission! This includes "routine" (in NT society) touching such as tapping people on the shoulder to get their attention. Many people at Autreat find it startling or unpleasant to be touched. If you already know a particular person and you know that person is comfortable with certain kinds of touch, that is fine. But do not touch people unless you know it is okay with them.
Jim Sinclair's websites:
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