Interview with IACC Member John Elder Robison
I'm John Elder Robison. I'm an autistic adult. People know me for my writing. I'm the Neurodiversity Scholar at William and Mary, and an advisor to the Neurodiversity Institute at Landmark college, and I'm also an IACC member.
Growing Up with Autism
I grew up thinking that I was a kind of a second rate person, and it gave me a poor self image all through my life. But I also grew up thinking that, well, if I just, you know, try harder I'm going to get by. And then there was absolutely no thought of any kind of support for me, so it's either figure out how to live independently or starve.
Reaction to Diagnosis
When I look at what changed for me when I learned about my own autism, first I'd have to say that I didn't know about autism in people like me before I knew I had this autism. All I knew of autism, prior to my own diagnosis, was characters I saw on Televsion that didn't talk. And I thought, when I first heard, I thought, that's crazy, that's not me.
Relief from Diagnosis
I felt a sense of relief that someone had given me an explanation for why I was the way I am that wasn't just cruel or nasty. But then I thought, there's no cure for this, because that was the first thing the fellow said. He said, well, it's not a disease, it's just how you are and there's no cure. And I thought, okay, I've learned why I failed at these things all my life. And now, it's good I know, but there's no cure.
Experience as a Parent
I was initially diagnosed with autism when I was forty. And I had at that time, a son who was in second grade. And when he was younger, I didn't know anything about autism, but What I did know is - I saw him interact with other little kids, and I saw him have these interactions and failures, and those failures reminded me of my own childhood, which until that time, I had largely forgotten. So I would see my son playing with another kid, and he'd get into a tussle and so I started, I would pick him up, I would, we would dress him in these Oshkosh pants that had lifting handles, and I would grab him, you know, and I wcould pick him up and hold him out. And I would say, well do this and don't do that. I didn't offer autism therapy, because I didn't know about autism, but I did know that the stuff he was doing happened to me all those years before, and I would say do this and not that. And and I would put it back down. And and you know when Cubby was in school, he had friends. And I thought that was the most magical thing, because the thing I wanted most of all as a little boy was to have friends and my son had that.
And I think that neurodiversity, the idea that there is a range of Neurology that is a natural part of the human species - that's a thing that a good many of us seem to be comfortable with and really embrace. And neurodiversity is our word. Neurodiversity isn't a diagnosis that is bestowed upon us by a doctor. It is our word to recognize that we are different, our brains are wired different. We don't have to be tested to be told this. You know it. I knew I was different all my life, even with no knowledge of autism as a kid. And neurodiversity is our way to take charge of the conversation, to say that neurodiversity is about the mix of exceptionality and disability that we live with. But it is mostly a function - it's mostly a focus of what we can do and who we are. It is a positive thing, not an inherently negative thing. And so I think that is really the important idea behind talk of neurodiversity. It is absolutely not a denial of disability, you can believe in neurodiversity and be very, very disabled. And you can also be very, very exceptional.
Civil Rights Imperative
Sure, there are autistic people who are profoundly disabled. There are women who are profoundly disabled, there are black people, Jewish people - members of every population group who are profoundly disabled and some who are exceptional. And I think that, that is the civil rights imperative. Every single one of those people is entitled to the same respect and human rights in our society. It doesn't mean that we should not be doing research to help them. We absolutely should. People who are affected by autism have many significant medical challenges, that we as a society have a duty to do our best to relieve. There's no question about that. But at the same time, there's no question about our basic entitlement to the same human rights and respect as everyone else.
The Impact of the Autistic Community
And so I think that we autistic people, shine a light on some fundamental problems that America has to face as a society. Housing is one that is a big one right now. I think that all of the autistic people who asked for soft quiet spaces in school, for natural light instead of fluorescent light. All those things we do - those were fights with school districts, but who in his right mind would not want to be in that kind of environment, autistic or not.
The autistic community is at times, very fractured. People are really heated about what they believe about housing or what they believe about the cause of autism or what should be done. And what I really try and say to people in the heat of that passion, is to just take a step back and think about what you really want. And that's what I want to see. I want to see autistic people join together with everyone else and form a path to a better future together.