Campaigns to cure medical conditions call for our attention, all the time.
Walk down Toronto's University Avenue, lined with hospitals and medical research centres, and you will see gigantic banners hanging down the outside of the hospitals. "Conquer Cancer: In Our Lifetime," they implore in big, bold, confident print.
I donate annually to research initiatives relentlessly chasing cures for diseases such as diabetes and HIV AIDS. Yet, even though more children are diagnosed with autism than childhood cancer, juvenile diabetes and pediatric AIDS combined (according to an autism report out of California), for many in the autism community "cure" is a dirty, four-letter word.
Professionally, talking about curing autism elicits raised eyebrows and contemptuous headshaking. Cure is considered synonymous with false hope. After all, diagnostic manuals confirm that autism is a lifelong disorder with no known cure. But some organizations, like Autism Speaks, don't believe it's necessarily a life-long condition and talk openly about finding a cure.
Why does it matter that autism is stigmatized as lifelong and incurable? It means less funding for research, intensive treatment is usually stopped in the primary years and there's less hope for families.
When it comes to cancer, on the other hand, whole cities "Walk for the Cure" and Lance Armstrong's global Livestrong Foundation raises millions of dollars.
Belief in a possible cure for cancer pushes research forward and indeed researchers have made important discoveries that are saving more lives. Hope is generated and cancer patients get a shot at becoming cancer survivors. Although there still isn't a cure for cancer, the hope isn't called false. To the contrary, families raise funds for research, even after a loss.
Without a strong belief in finding a cure for autism, research and funding has been limited. In Canada, autism fundraising is often focused on sending kids to summer camps, respite for families and local parent support groups. Autism Canada is among only a few organizations raising dollars for research. Families aren't encouraged to hope for much development in their autistic children, so why would a government commit more money for a disorder that is incurable?
For some higher functioning people diagnosed with autism, cure is a taboo that threatens their uniqueness or "neurodiversity" and, possibly, even their life. Is the ultimate cure genetic prenatal screening and option to abort?
A 2007 article in The Globe and Mail discussed the neurodiversity movement's opposition to the possibility of a cure eradicating their unique contributions to human behavioural and cognitive diversity. In Toronto, Estée Klar's commendable work with The Autism Acceptance Project de-emphasizes treatment in favour of giving voice to autistic people without trying to "normalize" or change who they are. The Project advocates supporting, indeed fully accepting, the individual talents, needs and unique ways of thinking that characterize people with autism.
Yet there might be some common ground. Most people in the field agree that since the autism spectrum is so wide, with symptoms varying greatly in both type and severity, each autistic person must be considered individually. To what degree we invest in treating symptoms versus accepting and accommodating unique differences is a discussion that should ideally include the voice of the autistic person (whenever possible) and their parents before specialists, educators, and governments slam the gavel down on funding and prognosis.
Parents can be encouraged to accept their children's uniqueness while at the same time empowered to hope for meaningful development that enables their children to participate in society and to live fulfilling lives. Acceptance and treatment can coexist.
I look forward to the day when the community of autistics, their families, researchers, educators and policy makers unite around a huge banner with the words "Hope," "Possibility," "Capable" and "Please Fund Research" in big, bold, confident print, even if we still can't use the four-letter word.
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