Interview transcript for Scott Robertson
Scott Robertson is an Asperger’s autistic adult and is involved with the Autistic Self-Advocacy Committee in many different ways, including researching, teaching and mentoring. He is the Vice President of the Autistic Self-Advocacy Network, and is a PhD candidate in the College of Information Sciences and Technology at Penn State University, University Park.
Q. I UNDERSTAND YOUR EXPERTISE IS ON INFORMATION TECHNOLOGY: I WONDER IF YOU CAN TELL ME ABOUT THE IMPORTANCE OF THE INTERNET IN THE LIVES OF AUTISTIC PEOPLE?
Scott Robertson: The Internet has been phenomenally important to the autistic community. It has been an empowering agent of change in the way that say the deaf community has had sign language and closed captioning has empowered them and helped them to live in the community better and communicate and interact with other people. And the same way with Braille, mobility enhancements and guide dogs for the blind community, and dyslexic community – the auditory-enabled software and recording devices like taped book have been empowering agents. A lot of these things we have now in self-advocacy, a lot of these things like conferencing that I’m at right now, Aut-Treat, in Pennsylvania. They may not exist without the online community, because it’s brought together so many people to be able to interact and communicate online through list-serves and emo list-serves, websites, instant messaging, in a way that we couldn’t necessarily do in face-to-face communication, because that’s difficult for us, because of challenges, but also because of our geographic separation. A lot of us are located in different states and regions in the country and different countries around the world, Canada, different countries in Europe, Australia, even Africa, South Africa too.
Q. IS IT POSSIBLE FOR YOU TO GIVE ME A LITTLE CAPSULE HISTORY? WHEN DID THE AUTISM-RIGHTS MOVEMENT AND THE INTERNET START TO CONNECT? AND GIVE ME A SENSE OF THE VARIOUS ORGANIZATIONS THAT HAVE SPRUNG UP?
Robertson: The Internet like as an agent of support for autistic people, for connection for communication and online communities was first talked about in the media in about the late ‘90s, 1997 to be exact. Harvey Bloom, a journalist had written a newspaper article for the New York Times and also an article called Neurodiversity for the Atlantic Monthly. There was talk about the autistic community online, but that was many years after it had started as being expansion among autistic people. It started in great numbers I’d say, about ’93, ’94, from what I read from some e-mail lists on line, like Autism Network International’s e-mail list that Autism Network International being what runs, the Aut-Treat Conference and a lot of e-mail lists kind of grow – and things like Internet Relay Chat, which is a method of chat for discussion on the Internet. So it’s been around for a long time. The media has only been covering it pretty well since about ’97, as I say, from newspaper articles from Harvey Bloom and others out there. But the Internet as an agent for communication and interaction existed in say about ’93, ’94, by autistic adults communicating online on e-mail lists, on Internet Relay Chat, on websites like kind of forums. So it’s been around for a long time, but people haven’t necessarily been recognizing it in terms of the ability, and it empowered so many self-advocacy movements for autistic people with voicing their concerns about things and getting their perspective heard and coming together. Now you’re seeing this realized in these major, major very populated online communities like Wrongplanet.net, which has about 19,000 members. It was founded by two teens on the autism spectrum, Alex Plank and Dan Grover, and most of those members are on the autism spectrum. It’s about 18,000 people and it only started four years ago, so you’ve seen this tremendous growth in the last say, four, five, six, seven years in the online communities and this surge as more and more autistic people are getting say, like broadband technologies and getting kind of more connected to the Internet in diverse ways. And as the Internet technology itself has evolved over the years.
Q. IS IT FUNDAMENTALLY EASIER FOR AUTISTIC PEOPLE TO COMMUNICATE ON THE INTERNET THAN TO COMMUNICATE BY TELEPHONE OR BY MEETING?
Robertson: Many autistic people find communicating on the Internet easier because of the fact that, for instance, on the telephone, if you want to use that for communication, there’s auditory processing nature, which you don’t have on the Internet. You don’t have that often for text-based communication. So it doesn’t pose a difficulty. And you also don’t have things like facial expression recognition. Gestures, people’s facial expression, their body language, their tone of voice, you don’t have to process those things on Internet text-based kind of communication. Versus on the telephone you’d have to process auditory kind of paralanguage, tone of voice, rate of speech kind of non-verbal language aspects. And in person you have to process visual and auditory aspects. On the Internet you might not necessarily have to process those kinds of things.
Q. MAYBE I SHOULD BACK UP A LITTLE BIT AND JUST GET FROM YOU A BASIC DEFINITION OF AUTISM. WHAT IS AUTISM AND HOW DOES IT AFFECT PEOPLE IN GENERAL?
Robertson To define autism the way I see it, and also from the Self-Advocacy Professional worlds and research, I view it as neurological differences not deficits as you often kind of see out there but differences in the way our brains process the world around us in three major areas: communication, language and social interaction, sensory processing from the environment around us, whether that sensory could be kind of tactile, it could be visual, it could be auditory – it could be our sense of balance. Our motor processing, how we move our bodies, and also, what’s also under-recognized a lot, the third one is executive functioning, which has to do with planning and organizing information and tasking – anything you have, like a goal kind of in mind, or reflexive thinking. Like for instance, metacognition, thinking about your own thoughts. Those are the differences that autistic folks have and there’s a tremendous diversity also across the autistic populations in those differences. And moving toward more of it being neurological differences, how we process the world – it’s kind of an evolving concept, because I think most people don’t know necessarily see autism as that. They see it kind of in a negative standpoint. They see it as a conjunction almost of a lot of bad things, rather than a different population, if you will, just like there are differences in terms of ethnicity, religion, people’s orientation, for instance in sexual orientation. Those are all differences people have in life and autism is just another difference, for instance in how our brains work.
Q. IS IT TRUE THAT AUTISTIC PEOPLE EXPERIENCE THE WORLD THROUGH THE SENSES IN A WAY THAT IS DIFFERENT FROM THE WAY NON AUTISTIC PEOPLE DO?
Robertson: Well, autistic people live in a different sensory environment than non-autistic people And so for instance, sometimes our senses may be hyper kind of attuned to the environment. A lot of my, for instance, my auditory processing is pretty hyper-attuned, hypersensitive, if you will. Not as much as some other folks who may find it painful to hear clapping, for instance. But I can pick up auditory kind of pretty well for my auditory processing. And for instance, my sense of balance – I went on a roller coaster once as a kid in high school, a physics class. It was physics day at Great Adventure in New Jersey, and I was like, once was an incident learning. I couldn’t do it again because I felt like I was going to die because I was on the roller coaster because of my vestibular sense. I can’t be upside down. It really impacts me that much. But some folks for instance may have a kind of hypo- kind of sensory kind of experience. For instance, I’m – like their sense of touch – they may need to touch a lot of other things in the environment to get that sense of touch feeling better, because they’re not getting as much of a sensation through their bodies. So the sensory system works differently in autistic people than you’d find in non-autistic people, and it varies from person to person, and sometimes it varies in that individual depending on the experience they’re having, the time, what stress they might be having. Past experiences they had during the day are very, very modular of how their sensory experience is like.
Q. WHAT IS "NEURODIVERSITY" AND WHAT IS THE "NEURODIVERSITY MOVEMENT"?
Robertson: The neurodiversity movement, Autistic Self-Advocacy in Conjunction – the autistic population, Autistic Self-Advocacy have …the neurodiversity is, why I’ve emphasized that, has been about autism and say dyslexia and other forms of diversity in how our brains process information – I’m saying that that’s a different population group, just like say folks have different ethnicities, different religions, and saying that we need better support by people out there. You’ll here commonly also from the autism side is Autistic Rights Movement, in part because people have thought of trying to kind of cure autism, if you will, try to wipe it away, rather than supporting autistic people who need support right now from their communities, from life, from a quality of life kind of standpoint. And so neurodiversity is about getting people in the population to recognize that we have this tremendous diversity in how our brains function and process with the world. And it’s not just autistic people having that diversity. As I say, it’s dyslexic, it’s ADD and ADHD people. It’s people that might have anxiety terms, social anxiety, general anxiety – there’s a lot of different ways our brains can process information that people never really think about that much. They tend to believe that people process it in the same kind of ways and how our brains are wired. And so thinking about things from our different cognitive styles is what we’re trying to push a lot out there with neurodiversity. At the same time, autistic rights support for us in society, supportive combinations that we need for being able to live and work and have good gainful jobs and go to college if we want to be able to do that, is a right that we believe in and we’re trying to get others to recognize the importance of this in society and understand that autistic adults are out there, even though most people see autism as only being a focus of childhood, even though we become adults as we grow up.
Q. DO YOU WANT TO BE CURED? DO YOU WANT SCIENTISTS TO BE OUT THERE TRYING TO FIGURE OUT HOW TO CURE AUTISM?
Roberston: The whole curing thing, I know it’s been in a lot of discussions in the last few years – it’s become big in the media – I personally, like a lot of my comrades and colleagues and friends out there, do not believe in a cure for autism. I think, for instance, living persons right now – you couldn’t just change their neurology – I mean we wouldn’t be who we are without our neurology. And people who are not living right now, if you had say some kind of genetic testing like you have with the Down Syndrome community, where you’d have some kind of abortions, which is where we, a lot of us are concerned, this is where we might be moving to, eventually, is some kind of genetic kind of testing, that would wipe away autism. I don’t believe in curing autism, but I do believe in better support interventions, better educational – better understanding and acceptance from people out there. If we had that, then we would be having tremendous, better quality of life across the age span and a lot of facts probably would stop talking about curing, because we wouldn’t be as marginalized and as disadvantaged any more, because society understood and accepted us, and provided the support resources that we need. And that’s the Autistic Self-Advocacy Network and other organizations I’m involved with – are part of that process of enhancing acceptance, understand and support resources for autistic persons across the age range and spectrum.