Walk for the cure. Race for the cure. Dance for the cure. In a world where every disability or disease seems to have its own sweaty fundraising event, these phrases sound perfectly normal to us.
Autism, not surprisingly, is part of this trend. Google "autism walk cure" and you'll get nearly 2.8 million results. Many of these events take place during Autism Awareness Month, presumably because all that raised awareness is supposed to make people even more eager to find a cure.
I salute all those walkers, and I know that the scientific research they support is important. But I think that some of the money they raise could be put to better use.
One blogger writing about Down Syndrome summed up my own feelings perfectly. He wrote, "The reason all the T-shirts say 'RACE FOR THE CURE' is that 'RACE FOR THE REASONABLE ACCOMMODATION' doesn't fit neatly on one side of the shirt."
Of course, the joke is that no organization would ever hold a "race for the reasonable accommodation." But when it comes to helping autistic people, the reasonable accommodations may be a lot more useful than the cure.
Although the term may not be familiar, you'd probably recognize a reasonable accommodation if you saw one. Think of a seeing-eye dog for a blind person, extended testing time for a student with a disability, or a sign language interpreter for a deaf person in the workplace.
You can see a good example of a reasonable accommodation for autism by watching the story of Dora Raymaker, an autistic adult who appears in my documentary, "Loving Lampposts: Living Autistic." Dora has difficulty with the motor planning involved in speech. She's also a visual thinker who consciously has to translate her thoughts into words. For those reasons, instead of talking, she uses text-to-speech software on her laptop to communicate.
Dora reports that when she used to communicate only by speaking, other people would find talking with her frustrating. They would often perceive her as much less smart than she is. By accommodating her need to communicate differently, we get the benefit of appreciating Dora's brilliance, and she gets the benefit of communicating in the way that is most comfortable to her.
Text-to-speech software is only going to become more popular now that it's offered on the iPad, but it's hardly the only reasonable accommodation around. One organization I'm familiar with that does a fabulous job of providing services to autistic people is the Daniel Jordan Fiddle Foundation. Rather than working on a cure, the Fiddle Foundation focuses on funding programs that can help autistic adolescents and adults function better in the world.
Recently, for example, the Fiddle Foundation announced a collaboration with the Autistic Self Advocacy Network to produce the "Empowering Autistic Leaders Manual." According to the announcement, the goal of the manual is to provide "every college student on the spectrum with information and support to enhance self-advocacy, engage in public advocacy and affect meaningful systems change on campus and in society at large."
Of course, not every autistic person can go to college, but the Fiddle Foundation has a number of programs for those more severely affected by autism. These include vocational and life-skills programs, family respite weekends, and health and wellness programs for autistic adults, just to name a few.
What do all of these reasonable accommodations have in common? The answer is that they start by acknowledging an autistic person's disability as a fact of life. As Dora says of her text-to-speech software, "It makes the invisibility of my disability visible." What she means, I think, is that if we accommodate her disability, we'll make her life easier than if we try to ignore that disability. Trying to get her to communicate in the "normal" way isn't useful. Instead, we need to recognize and accommodate the disability and not make the goal to cure it.
Advocates of neurodiversity are often accused of "burying their heads in the sand" (just look at the comments sections of my previous posts if you don't believe me). Neurodiversity, the argument goes, celebrates the small group of "high-functioning" autistic people who can live completely independently and ignores severely affected people who will need support throughout their lives.
But it's our excessive focus on scientific research, investigating vaccines and finding cures that causes us to not pay attention to the needs of severely affected autistic people who are here today. We are probably decades away from a full understanding of the cause or causes of autism, and decades more from any sort of cure. Right now, a walk for a cure is an exercise in wishful thinking -- a desperate hope that we can keep the invisibility of disability invisible by somehow making autism go away.
But it won't.
Scientific research into the causes of autism will continue, and the best of that research will help us better understand autism. But we need to balance our support for research with investments that can improve the lives of autistic people who are already among us. Reasonable accommodations will not make the life of a severely autistic person perfect, easy or typical. But they might make it a little better. If the choice is between that and walking for a cure, shouldn't the answer be obvious? It looks like we're all going to need bigger T-shirts.
Follow Todd Drezner on Twitter: www.twitter.com/lovinglampposts
Todd Drezner: Reconsidering the Nature of Autism
Todd Drezner: Autism: The Most Popular Disability
Todd Drezner: Learning to Embrace Autism
The sad thing is most Autism Research is only for children and they are finding that people with ASD's are prone to some pretty severe medical issues like GI abnormalities but they do not research how that progresses as people with Autism get older and become adults. I personally have some of the same GI problems that many of the children have been found to have and have went as far as to discuss the issues with the group of Neuropsychologists, MD's and GeInt's who have been researching this.
There needs to be some funding for research on the effects of Autism in Adulthood.
The only way to boost our confidence is finally accepting who we are as a person in our unique way. So why not spread this slogan I have been slowly telling others about.
Great Article by the way! I really enjoyed reading it.
Twice as relevant, a worry to all the overpaid autism experts out there!
In summary it's a short term and long term plan.
Accommodate right now is one track and the "cure" on the other track.
It seems to me that the best accommodation for the now, is educating the public as to symptoms and approaches towards their brothers and sisters on the spectrum.
Oh and also,what holds true across the board, spectrum,race or affiliation.
Tolerance and compassion
Zidlow Marx