Twelve Years of Writing on Autism

It seems like yesterday that I started blogging about autism.  Actually, it was spring of 2007, shortly after getting a contract for my first book.  The first essays were about Look Me in the Eye and the publishing process.  At the time I didn’t regard myself as having any special insight into autism.  I just knew about my own life and that was what I wrote about.

One of Steve Heller's fabulous robotic creations

But readers saw far more in the words than I, and invitations to speak to schools and autism groups began arriving almost immediately. I was something of an anomaly. In 2007 an openly autistic adult of my age (49) was pretty unusual.  It’s easy to forget that when we see how visible autistics are today.

The message that resonated most was that we can grow up disabled by autism and become successful adults, also thanks to autism. 

Some people wanted to hear about my life and extrapolate from my story to their own family.  Others wanted to talk about problems and treatments; some familiar to me, and others not.  The book appeared that September to considerable fanfare, which proved to be timely.  Advocacy organizations of the day were portraying autism as a scourge, and autistic people as zombies, or worse.  What I published was – unwittingly – an antidote to all that.

Many people believed autism was an emergent epidemic thanks to lead and mercury poisoning, allegedly delivered through vaccines.  With that as background my story of childhood disability followed by adult success was timely.  Look Me in the Eye provided a needed counterpoint to the prevailing autism narratives of the day.

I never doubted that my life had followed an unusual trajectory and might not be easily emulated. At the same time I knew the relentless negativity accompanying other depictions of autism wasn’t universal either.  I instinctively resisted the suggestion that I was a product of evil pharma conspiracy, if such a thing even existed.

With the passage of time I met many autistic people – adults and children – and was exposed to all sorts of challenges and abilities that I had never associated with autism.  I had not started out as an autism expert, but within a few years I’d met more autistic people than most clinicians meet in a lifetime and I was well on the way to acquiring expertise in that topic.

Through that time most of my readers were parents.  They had children of all ages with most being 5-15.  Some said my writing felt like a breath of fresh air with all the horror stories that surrounded us. Today many of my readers are autistic and they naturally have a different take on things.  In some cases autistic readers shared my views of autism and diversity while other autistics had sharply differing opinions.

Now I can see why I felt so different.  As an adult who had moved out into the world ignorant of my autism, I was well established in a career before receiving my diagnosis.  I was successful before I learned I am autistic, which put me in a different position than kids today.  When they learn about their autism after being evaluated in response to some behavioral or academic problem the diagnosis became an explanation for failure, with no good side. At least at first.

The autism diagnosis explained previous troubles for me too, but from the beginning I could see how my differences also facilitated success.  And most important, I had a wife, a kid, a job, and a home of my own. 

Eleven years passed.  The moms who embraced my stories in the beginning saw their kids group up.  The fears they had in 2007 have hopefully been replaced by acceptance and joy at who their kids became.  Messages like mine were no longer quite as urgent, at least for those moms. 

Meanwhile kids are diagnosed with autism every day.  New parents find Look Me in the Eye, and it’s just as relevant now as in 2007, but there are now far more books to choose from and it's now one narrative among many. 

The young people I spoke to in 2007 have mostly grown up and they are living their lives.  Some are active in autism advocacy.  Others are concerned with getting through college or making a living.  I've faced the same things myself.  My writing has opened up many wonderful opportunities.  It's taken me all over the world to speak, and introduced me to many educators, therapists, and scientists who are committed to a better life tomorrow for the autistics of today.

I've learned a lot about the medical and social challenges many of us face and I'm proud to serve on government committees to make plans to address our many needs.  I'm also proud to be part of the first initiatives to teach neurodiversity as culture in American colleges.  Now I'm eager to see more results!  

Meanwhile I continue to write a mix of books and articles.  Some of my first readers are still friends and readers today.  Some have books of their own now, and others work in various forms of advocacy.  In some cases our lives have become more intertwined as we develop courses together, work on government policy, or volunteer in autism organizations.

New readers connect with me all the time, via online messaging, postal mail, and in person at events.  With books like mine it seems like most people pick them up “when needed,” which is different from reading a series of thrillers, where the next book is eagerly awaited by legions of fans.  For those authors many of tomorrows readers are there today just as they were last year.

A writer of thrillers is always “current” in the sense that his characters live in his mind.  For me, the issues I write about are constantly changing and evolving.  Neurodiversity has taken off in the past decade, and openly autistic people are everywhere.  Schools are focusing on teaching autistic people, and universities are establishing autism programs.  Workplaces are changing too, and it’s a full-time job keeping up with all of it.

The most important thing I have learned since Look Me in the Eye is about responsibility to my community, which is #ActuallyAutistic people.  In my opinion, anyone whose writing is read by a large number of people has duty of care and I try to follow that by not ridiculing or bullying, and by presenting the best ideas I am able. 

(c) 2018 John Elder Robison

John Elder Robison is an autistic adult and advocate for people with neurological differences.  He's the author of Look Me in the Eye, Be Different, Raising Cubby, and Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar at the College of William and Mary in Williamsburg, Virginia. He's also a visiting professor of practice at Bay Path University in Longmeadow, Massachusetts and advisor to the Neurodiversity Institute at Landmark College in Putney, Vermont.  

The opinions expressed here are his own.  There is no warranty expressed or implied.  While reading this essay will give you food for thought, actually printing and eating it may make you sick.