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

Forsythia said…
Our grandson is on the spectrum. I wrote about the difference one wonderful teacher made for him ("Thank you, Ms. Ferguson") in my blog (lifeinmerlin.blogspot.com). At his church, the choir director and first communion and confirmation class teachers have also treated him with good-humored patience over the years. He enjoys the activities. A neighbor asked for his help in socializing her Doberman. I'm glad there are adults who can see and appreciate the kid beneath the quirkiness.
Test Blog said…
Hello again,

sorry if I looked like I was spamming, but I am interested in getting a piece promoted with you. Is this possible?

Yuval Levental
Test Blog said…
Adding to my last comment, I am autistic, so I get too excited about things.
Test Blog said…
I want Treatment for my Asperger’s – and this is My Plan

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.
Unknown said…
Thank you for putting yourself out there! So much of your writing is very familiar!
Is autism something worth celebrating? No, autism by itself is not worth celebrating, but nor is normalcy.

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.

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