People With Autism are Stepping Up, for AutismApr 2, 2014
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Interviewer: The self-help movement for supporting autism advocacy. We're with William McMahon, he's the autism community outreach officer for University of Utah Health Sciences, and let's talk about this self-help movement for supporting autism advocacy. Is it what it sounds like?
William McMahon: It exactly is. So we have many adults who have great gifts and are very skilled at communicating about both their sensory challenges but also their strengths, and they are as much as the rest of us coming to the realization that they need to advocate for themselves.
Interviewer: And up until this point they really haven't. Why is that?
William McMahon: Well, I think part of the lack of recognition of autism as a diagnosis in people with good intellectual skills and other skills, much of that has been unrecognized, and now we're making diagnosis of individuals with much milder forms of autism and much greater functional capacity. It's those people who are really spearheading this self-help movement.
Interviewer: So how can someone with autism advocate for autism?
William McMahon: Well, I'll give you an example of one young man who has used his skills in design and engineering to develop a nonverbal way of communicating that he is a resident on the autism spectrum. He refers to himself as an "autist," and he has this black wristband with a white design of the perfect fifth, a musical concept of the perfect fifth, and he is distributing that to his friends on the spectrum and others.
He also has a complimentary wristband that's in the white color with black writing to allow friends of or supporters of autists to recognize each other.
Interviewer: And I imagine it's a conversation starter probably?
William McMahon: Yes, and can also be just an opening in a public way that is non-spoken that says, "I am supportive of you."
Interviewer: Sure. Okay, so tell me a little bit about what the message is that self-help movement in supporting autism advocacy is trying to put forth.
William McMahon: I think the number one message is that individuals with autism feel terribly isolated partly because of sensory issues, perhaps they're hyper-attuned to different lighting set ups or sound, background noise, but at any rate, they feel barriers in our society that are imposed by a lack of understanding by the rest of us so they're trying to educate us about how to help them join the mainstream of society.
Interviewer: And what are some of those things we can do to help them?
William McMahon: Well, I think the most important thing is to recognize that like all of us, we all have limitations, and individuals with autism, perhaps like me who wears eyeglasses, I've got a sensory limitation if I put my glasses on then it's pretty much accommodated. People with autism may require a little more time in explaining themselves, may have difficulty with certain lighting or other elements of sensory input, and may do way better either on the work site or in social settings if we can accommodate to these specific needs.
Interviewer: That's an interesting concept that you brought up that we all have limitations, right? It's just unfortunately for people with autism it gets pegged as a disability a lot of times.
William McMahon: Exactly, and I think it's been said before but I believe it is true that all of us are at best temporarily abled, and all of us have a disability that we just haven't recognized yet.
Interviewer. Alright, so we've talked a little bit about what we can do. If somebody is an individual with autism and they want to join this self-help movement or be a part of it, do you have any resources or what's the first step?
William McMahon: We're going to have a self-optimization workshop that will be sponsored by our department, May 9th and 10th. We will give you the information about how to register. We have an e-mail address, and again, the dates are May 9th and 10th, here on university campus at UNI, the University Neuropsychiatric Institute.
Interviewer: Are there other resources on the web that you recommend for people as another starting point, a national organization for example or anything of that nature?
William McMahon: The young man that I mentioned with the perfect fifth has a website that's informative. It's perfectfifthproject.org. That's a place to go, but if you simply Google "autism self help," I think you'd be surprised by how many different organizations and perspectives there are on this.
Interviewer: Any final thoughts? Anything we forgot to address in this particular conversation? Anything you'd want the audience to know?
William McMahon: I think in the 35 years I've been involved in helping individuals with autism and trying to understand from a research perspective, the self-help movement is one of the most important developments that will go a long way towards helping adults with autism and their parents.
Man: We're your daily dose of science, conversation, medicine. This is The Scope, University of Utah Health Sciences Radio.