Autism Vox

Thinking Differently: Advocacy, Witness, Hope

by Kristina Chew, PhD on October 29th, 2007

Advocacy. Witness. Hope.

Why I’m mentioning those words to start this post off will be apparent by the end of this post. In the meantime, advocacy, witness, and hope seem good terms to bring up in regard to an article entitled, Ignorance of autism is ruining lives in the October 29th Scotsman, and to a new campaign in the UK, Think differently about autism. The Scotsman cites some figures from a survey in Scotland:

(1) 59 % Scots “wrongly believe there is a cure for autism.”
(2) One-third think that autism “affects only children.”
(3) Almost two-fifths “wrongly believe most autistic people have special abilities such as the character played by Dustin Hoffman in the film Rain Man.”
(4) 1 in 8 people think that someone displaying “typical autistic traits” has a disability—-the rest are “most likely to think they were drunk, on drugs or just ‘odd.’”

Those results make me wonder what the figures among people in the US might be, especially in regard to the fourth figure cited: What do people think when Charlie is humming in the grocery store, or pacing with his head down, or saying “Jim, it’s okay” a dozen-fold times?

I would venture to say that, of late here in New Jersey (where the prevalence rate of autism is 1 in 94), when Jim or I have simply said “autism,” the stranger who was glancing at Charlie has more often than not responded “oh yes, my [relative/friend/hairdresser/cousin/etc.] has a child” (I’m not making up the “hairdresser” response). Or, if we don’t immediately say “autism” or “autistic” (we tend to say both), sometimes the other person says the word before us.

It is difficult moments in public—-the unkindness of strangers—that the The Scotsman article particularly highlights:

Carol Evans, national director of NAS Scotland, said: “This lack of knowledge devastates lives. One woman diagnosed with Asperger’s syndrome described being forced to leave her local darts team, because rumours were spread that she was danger to the public.

“One mum of a child with autism described having to constantly explain to people what was wrong with her child, on planes, in shops, or even at the bus stop.

“The misinformed and judgmental attitudes of complete strangers made this woman a virtual recluse. This is unacceptable when one in every 100 people in Scotland has a form of autism.”

Ms Evans said the new research had highlighted the need for greater understanding of autism. “We want to change perceptions of this complex and lifelong disability,” she added.

“We know that without understanding the signs and characteristics of this condition, the public can mistake the behaviour of people with autism for being naughty, anti-social or ‘weird’, and presume the person with autism is dangerous or a threat.

“This campaign aims to dispel those myths and educate people about the reality, as the effect negative public attitudes have on parents is soul-destroying.”

Today, October 29th, the UK’s National Autistic Society is lauching its Think differently about autism campaign, which seeks to “view the world through the eyes of people living with autism” and (in the words of Mike Stanton who writes the Action for Autism blog):

“to spread the word that autism need not be so devastating and disabling if only people would take the time to understand it and make the effort to adapt our schools and workplaces and public spaces to make them autism friendly.”

It’s a necessary campaign, with (as I interpret it) goals both pragmatic and philosophical: What concrete and actual measures can we take not only so that people do not stare if a child tries to smell every pack of sushi before choosing one, but so that a parent and an autistic person feel compassion and support when they might be having a difficult moment in a public place? More philosophically: What kinds of changes—changes in thinking, in how disabled persons are seen, in understandinging that accepting a disability need not be a passive act of surrender—-need to be fostered in society, to make the world a better place for people of every sort of difference, disability and ability?

I work on teaching Charlie the “you touch the food, it’s yours” rule in the stores, but it is certainly all right when he sniffs the pack of sushi before placing it in the shopping cart. (Don’t they say you ought to smell fish before buying it to know if it is fresh……). It is notable that The Scotsman has entitled its article Ignorance of autism is ruining lives: Life with autism has its own difficuties, but it is not so much autism, as misperceptions and misunderstanding about autism, that make things hard.

Just tonight Jim and I were reflecting on the fact that, if Charlie did not have autism, we would not now be living in a place that we feel most comfortable in—-New Jersey and the New York metropolitan area. Prior to Charlie’s diagnosis of autism, Jim was teaching in St. Louis, Missouri, and I had just started to teach in St. Paul, Minnesota, where we had moved to. Jim flew up every weekend the first year and had a sabbatical the second, but that was not easy. I resigned from my job when Charlie was three years old and we all moved back to St. Louis; Jim left his job too after we decided that New Jersey (where Jim is from) was the best place for Charlie to attend school. We’ve moved among jobs and households; we’re very glad to be here—-all because of Charlie.

It was because of, in honor of, for, in thanks to, Charlie that Jim organized a conference on Autism and Advocacy: Witness and Hope just over a year ago. The conference was held on October 27, 2006, on the Lincoln Center campus of Fordham University (where Jim teaches American religion and history). Jim opened the conference with an account of riding bikes with Charlie; Special Olympics CEO Tim Shriver spoke on the kind of fun that lasts and “diffability”; there was a panel on advocacy and presence; Kassiane Alexandra Sibley, English professor Bruce Mills, and other friends talked about the “varieties of autism advocacy”; a panel on Catholic education and the spectrum followed; I offered some closing reflections on advocacy, witness, hope. If I may quote myself:

Witnessing is not about bemoaning the life we wished we could have had, but about seeing what is right in front of us, now, a person with autism. Witnessing is about autism advocacy as needing to start not with changing our children to fit some preconceived “dream” we once had for them, but in loving them as they are, for what they are, and trying to understand from there what we can do for them.

I once asked Bob Fisher, who is Jim’s cousin and a screenwriter, about writing an autism comedy. Much happens in our daily life with Charlie—-like our having to clean the entire bathroom, his’s bed, and him at 2am a few nights ago due to an upset stomach—that I prefer to laugh at. (Indeed, laughing in the midst of such a cleaning operation makes it a lot easier.) I noted this to Bob and he asked me, “What does Charlie think is funny?” And I had to pause to think about what makes Charlie laugh and it is not exactly the same as for me. (A Lego put into the toilet.)

And by striving to see what is funny from Charlie’s perspective, I try to understand what the world looks like from where he is.

When you think differently, you never know where you’ll end up—what you’ll learn you can laugh it, and what you can see that you never knew was there.

Advocacy. Witness. Hope.

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POSTED IN: Autism Advocacy Conference, Charlisms, Disability Rights, New Jersey, Philosophy, Stereotypes