Should Autism be Celebrated?
The James River shoreline, near Williamsburg, VA (c) John Elder Robison |
Autism is a neurological difference that’s associated with
some gifts and a great many disabilities.
For a person to be diagnosed on the autism spectrum, they must have
significant impairments as a result of autism.
We may have gifts too, but disability remains the basis for
diagnosis. Some autistic people are
rendered non-speaking by their condition, and I can’t imagine who would
celebrate that. Others live with
significant medical compilations like epilepsy.
I’ve yet to meet anyone who celebrates that either.
At the same time, there is a growing body of evidence that
autistic brain differences have facilitated some of mankind’s great
accomplishments in music, engineering, science, theology and the arts. The achievements are certainly worthy of
admiration, but are the autism differences that facilitated them cause for
celebration? I guess that’s a matter of
opinion.
I think neurological diversity is something to celebrate
because different people do different things.
Ten typical people struggled to push a cart with skids, until an
autistic guy showed them a wheel. Without
difference, our species would have come to an end long ago. It’s diversity that gives us the species
ability to cope with an ever-shifting world.
They say Newton was autistic, and his calculus is part of
the foundation of the modern technical world.
Do we celebrate the tool, or the different mind it came from? In today’s world the creator of PokĂ©mon says
he’s on the spectrum. Do we celebrate
that, or his accomplishment? All around
you, there are autistic people with exceptional skills and talents. At the same time, there are autistic people
crippled or limited by their autism. It’s
hard to reconcile the dichotomy of that.
I think autistic people – as a group - are worthy of
celebration. In American society we set
aside periods for celebration of all sorts of people – women, African
Americans, cancer survivors, and more.
Autistics are just as deserving of celebration as any other group, and
in some ways more so because of our persistence in the face of marginalization
and mistreatment. And because we’ve brought society many cool things.
But I personally don’t see this month as a time of
celebration. I see it as a time when
autism is in the news, and in the public mind, and as a result, we build
awareness and acceptance in the general public.
We hope a more aware public will treat us better, and
provide more assistance and accommodation.
A more aware public might understand why we behave differently and respond
more appropriately in many situations.
Readers of my books have told me that, and I’ve heard the same said to
other autistic authors.
That’s a good thing.
The only downside to that kind of awareness is when autism is depicted
in an unrealistic way – as devoid of disability – because that makes an
ignorant public think we don’t need supports and services, when in fact we do. That’s
a sad truth about our society. The more
eloquently a person is able to articulate their needs, the less support they
are deemed to need. We must always be conscious
of that, when we talk about autism.
What about autism acceptance? That’s the thing many autistic self-advocates
focus on this month. If you believe
autism has been part of humanity forever then acceptance is the only point of
view that makes sense. If you believe in
the value of human diversity, autism is as much a part of that as red hair. You
may like parts of it, and you may hate parts of it, but it’s here to stay and you
best accept that.
Always remember that accepting autistic people does not
equal accepting autistic suffering or disability. Many fine people devote their lives to
relieving suffering in our population, whether through addressing medical
issues like intestinal distress or by helping us make friends or find
jobs. That work is an admirable
accompaniment to acceptance.
To do anything but accept, embrace, and support autistic
people is simply mean. It’s wrong. We
did not ask to be how we are. You may
see us as different, but from our perspective, it’s the typical population
who’s different. Every human has that right to acceptance, and we are no
exception. We bring great gifts to
humanity by being here, and there’s a cost to have us. Just as there’s a cost for every other human
on the planet.
So what would I ask for this month? Volunteering at a local
autism program can truly change lives.
Get involved in research as a volunteer or advisor. Stand up for
autistic people in government. Studies
have shown that 100 dedicated people at the state house can absolutely move the
positions of legislators. Make friends
with autistic people, and cultivate the relationships you already have. There are a million things you can do that
truly make a difference.
Make life better for autistic people. Call that celebration, call it advocacy, but
do something real. That’s my best wish
and advice for this April, whatever you want to call it.
John Elder Robison
Comments
sorry if I looked like I was spamming, but I am interested in getting a piece promoted with you. Is this possible?
Yuval Levental
by Yuval Levental
My form of Asperger's has many strengths. When I was young, I was really good at doing arithmetic fast and studying geography. However, at the same time, I had trouble communicating with people and staying organized to finish a task.
In 2011, I had discovered a book called Shyness and Love by Brian Gilmartin (http://www.love-shy.com/resources#shynessandlove), a professor of psychology, which would prove to be instrumental in my search. This book contains good information for people that have significant trouble finding love.
I hadn’t touched it in a while, but one day in the spring of 2013, my mom mentioned something about how I had a stuffy nose. I consciously realized that I had this problem all my life, and then remembered that Gilmartin had studied the physical characteristics of his research subjects, which imposed striking similarity to mine. I remembered that Chapter 15 contained the physical symptoms of Love-Shyness, the name of the condition that he described. “Problems of the Nose” was the section of the chapter that said that improper breathing was the single best predictor of love-shyness. I was really excited, and made an appointment with my doctor. He confirmed that my nose was unusually clogged, and gave me a nasal steroid to treat it. The effect only turned out to be temporary.
During that time however, I noticed that I had a peculiar dent at the top of my nose which I noticed that very few people had. I had seen a website during my research featuring people with more severe autism, and noticed that a significant proportion of them had unusual facial features. I decided to do some quick googling and found a study correlating different facial features with autism from the University of Missouri (http://www.cbsnews.com/news/children-with-autism-have-distinct-facial-features-study/). I noticed my face looked similar to theirs, but by that time, I had forgotten about pushing for treatment, as I was in my last semester of college and I was taking an intensive Senior Design course. It was interesting that the cause in certain types of Autism actually wasn’t in the brain, but stemmed from the body.
The latest step I took was in December 2014. I went to a plastic surgeon and he confirmed that the renix, or bridge, of my nose was putting too much pressure on me and that it should be straightened for maximum comfort. I think that surgical treatment is the next step I will take. Overall, it would improve the quality of my life if I were to breathe through my nose more clearly.
People are worth celebrating and so are their achievements. We, as a society, need to be aware that people different from ourselves or our expectations achieve things, too. So, it's important to include our differences in our celebrations, but not to celebrate either difference or sameness for its own sake.