John Elder Robison would stand out in a crowd even if he didn’t have Asperger syndrome. A gruff, powerfully built, tirelessly curious, blue-eyed bear of a man, he hurtles down a San Diego sidewalk toward a promising Mexican restaurant like an unstoppable force of nature. “What’s keepin’ you stragglers?” he calls back to the shorter-legged ambulators dawdling in his wake.
As they catch up, Robison utters his all-purpose sound of approval — “Woof!” — which he utters often, being a man in his middle years who is finally at peace with himself after a difficult coming-of-age. For the acclaimed author of the 2007 New York Times bestseller Look Me in the Eye, a diagnosis of Autism Spectrum Disorder in mid-life was liberating, giving a name to the nagging feeling that he was somehow different from nearly everyone around him.
Like many people with Asperger syndrome, Robison considers himself, as he puts it, “an aficionado of machines.” He built his first DIY creations with an Erector Set; the elegant machines that sustain his livelihood now have names like Rolls-Royce, Mercedes, Land Rover, and Bentley. His high-end auto-repair shop in Springfield, Massachusetts, J. E. Robison Service, is one of the most successful independent body shops in New England.
As a precocious gearhead in the late ’70s, the bearded, bespectacled Robison was the guy who pimped out Ace Frehley’s guitars to spit flames, spew smoke, and erupt in cascades of light at KISS shows, sending the band’s legions of admirers into spasms of pyrotechnic ecstasy. A veritable rock-and-roll orgy was underway all around him, but Robison (who had a girlfriend at home) was too terrified to even start up a conversation with a woman he didn’t know. After his time on the road, he took a job at Milton Bradley developing talking toys and games. Then came a stretch of unfulfilling years supervising sales of laser power supplies and fire alarms. Finally, in 1986, he opened his auto-repair shop.
In Look Me in the Eye, Robison described why he felt more comfortable around machines than people: “No matter how big the machine, I am in charge. Machines don’t talk back. They are predictable. They don’t trick me, and they’re never mean. I have a lot of trouble reading other people. I am not very good at looking at people and knowing whether they like me, or they’re mad, or they’re just waiting for me to say something. I don’t have problems like that with machines.”
One day, a longtime friend who was also a therapist handed him a copy of Tony Attwood’s Asperger Syndrome and said, “This book describes you exactly. You could be the poster boy for this condition.” Robison was skeptical only for the few moments it took him to glance through the pages and realize that his friend was right. Robison asked him if there was a cure.
“It’s not a disease. It doesn’t need curing,” his friend replied. “It’s just how you are.”
Discovering that other people struggled with the same inability to read faces, sensory overload, anxiety, and single-minded obsession with topics of interest helped catalyze Robison’s transformation into a writer, and Look Me in the Eye came out in 2007. Bestsellers run in Robison’s family; his younger brother, Augusten Burroughs, published his own account of their troubled upbringing called Running with Scissors, which was turned into a movie. The Aspergian frankness and guilelessness of Look Me in the Eye gave the book its distinctively bracing candor, much as Holden Caulfield’s X-ray vision for the “phonies” of Pencey Prep did for The Catcher in the Rye. Now Robison has published a book of anecdotal wisdom for young autistics called Be Different.
The core message of Be Different is to revel in your autistic differences but also to try to fit in as much as you can. It’s a book about hope — but not the kind of hope touted by vendors at conferences built around the promise of “recovering” kids from autism. Instead, Be Different advocates self-acceptance coupled with practical strategies for adapting to a world designed for non-autistic people. “The brain differences that make us Aspergian never go away,” Robison writes, “but we can learn two important things: how to play to our strengths and what to do to fit in with society. Both those skills will lead to a vastly improved quality of life.”
The book offers tips on making emotionally appropriate responses, managing social anxiety, and leveraging all-consuming “special interests” into a fulfilling occupation. The neurologist Oliver Sacks famously compared the life of autistic author and livestock-industry consultant Temple Grandin to that of an anthropologist on Mars; in some ways, Be Different is like a guidebook to the strange customs of Earth for those who occasionally feel like they were born on the wrong planet. “I’ve learned to say ‘please’ and ‘thank you’ fairly often,” the author observes. “That’s a simple rule that delivers good results.”
Robison refers to the non-autistic inhabitants of this weird planet as nypicals, because he thinks the tongue-in-cheek term used by many autistics — neurotypical — is too clinical-sounding. “I suspect that the importance of initial connection is the reason nypicals evolved the hand-shaking ceremony,” he writes. “By shaking hands with everyone when you enter a room you make a connection to them and avoid the ‘I never noticed you’ problem.”
The occasion of my first meeting with the author was IMFAR 2011, the annual conference of the International Society of Autism Researchers sponsored by groups like the Simons Foundation for Autism Research, Autism Speaks, and the Autism Science Foundation. Held last week in San Diego, the conference offered a wealth of state-of-the-art research on everything from the biochemistry of the autistic brain to the pressing need to develop early interventions that will exploit youthful neuroplasticity to minimize disability in later life. For anyone seriously interested in leading-edge studies of spectrum conditions from many different angles, IMFAR is a must.
At the same time, after an eight-hour day of renowned scientists drilling down into the tragic deficits, dysfunctions, and disabilities suffered by those on the spectrum, it was refreshing to hang out with thriving, wisecracking Aspergians like Robison, WrongPlanet.net founder Alex Plank, and autistic self-advocate Stephen Shore. (As a child Shore had a significant language delay, and his parents were advised to place him in an institution and move on; they refused, and he’s now a professor at Adelphi University.)
At one particularly relaxed dinner with Shannon Rosa of the Thinking Person’s Guide to Autism and Matt Carey of Left Brain/Right Brain — both of whom are proud parents of profoundly affected autistic kids — Shore coaxed sonatas from his iPad piano while Robison expostulated on the Old River Control Structure, the elaborate system of floodgates designed to keep the Mississippi from flooding Cajun country, which was just starting to make the news. Robison’s affection for machines was fully evident at IMFAR, whether showing off his beautifully composed digital photographs (some of which are featured in this blog post) or herding a flock of autistics and nypicals down to the waterfront to watch huge container ships in action.
Before heading to San Diego for IMFAR, I spoke with Robison about Be Different, the aspects of life on the spectrum that he still finds challenging, what it’s like to be one of the few autistics in an advisory role to a fundraising organization like Autism Speaks, and the folly of branding people either “high-functioning” or “low-functioning.”
Steve Silberman: What inspired you to write Be Different?
John Elder Robison: When I wrote Look Me In The Eye, I never intended it to be an all-inclusive guide to autism — it was just the story of my life. But so many people have come up to me asking me to explain how I became successful. They tell me, “You said that you were going to teach yourself to fit in and you did. I want to know how to do it myself.”
Then other people say things like, “I don’t understand how you could claim to be a person with autism and yet be at these loud rock and roll shows with flashing lights. My son can’t stand anything like that.” They want to understand how people with autism can be so different from one another and yet the same, and if I have some secret that will help their kid.
I don’t have all the answers. But the vast majority of people who read my stuff have a personal stake in autism — whether it’s them, their husband, their boyfriend, their child, or people they work with at school. That made me realize that I have a duty. When somebody asks me “Why?” I shouldn’t just shake my head and say “I don’t know.” That’s what evolved into Be Different. It’s the result of a journey of unraveling why I do the things I do and why I feel certain ways.
I thought very carefully about the things that have made me successful, and also the things that sometimes keep me from being successful. I looked at the DSM criteria for autism and Asperger’s and considered how each trait affected me. Some of the traits are just purely crippling things; there’s no good side to them for me. But other traits, like social disability… if I didn’t have friends because I was isolated by disability, I also had free time to study what I was interested in, which was technology.
I’m not very flexible –all I do is think about is electronics and computers — which people think is a disability. But when you combine that with my autistic fixation on things, you’ve got a kid who has a really powerful ability to learn about what he’s interested in. You can go a long way with that. Some traits that cripple me in one way have been a gift to me in another way.
Silberman: What are the aspects of autism that you still find really hard to deal with? You don’t talk much about that in your books.
Robison: The social disability is the most challenging. As a middle-aged adult, the biggest danger to me is falling into a serious depression. That happens to me more or less exclusively as a result of my social disability. That’s the hardest thing for me. I can only go so far in remediating that. You know?
If you take me and a mom with a newborn baby and sit us in front of a computer and flash faces in front of us so we have to push buttons to say what the faces mean, I don’t have any idea. But the mom can get those things right most every time. That means that when you put the two of us into a strange social situation, the mom can just read the room. I can’t. But I’ve taught myself adaptive behavior. I look at people slowly and think, “What’s he looking at? What’s he doing and what does it mean?”
By now, I can make pretty good judgments about what people are feeling toward me. But it takes a lot of energy. Ultimately, I can only make a logical determination. But the mom can look at somebody who’s angry and feel his anger and pain. I look at the person who’s angry and it’s a kind of dispassionate, detached process. I think, “Hm, he’s angry — I wonder why?” I don’t feel it. So that causes me to not be able to respond appropriately in some situations. Frankly, it still causes a great deal of stress for me.
Even though I’m not a disabled person by any means today, I would say that the social challenge is a characteristic of disability that I have not been able to overcome. I’ve only been able to circumvent it a bit and do my best with it. That’s OK, but if you ask me what the hardest thing for me is about autism, that’s absolutely it.
Silberman: Are there any ways that society could be reformed to make it a more comfortable and supportive place for autistic adults?
Robison: I don’t think that’s a realistic question, Steve. We represent one percent of the population. Asking what 99 percent of the world should do to make it a better place for that one-percent member — that’s verging on science fiction and fantasy. People who get into that way of thinking become militant about demanding their rights and thinking about what the world owes them. Frankly, I don’t think the world perceives that they owe us one single thing.
If you’re a guy with severe autistic disability and you can’t talk, you cry out for compassion by your very existence. It’s obvious when people look at you and listen to you. If you’re a person in a wheelchair, nobody can reasonably argue that you should just get your ass across the street. But when you’re a person like me and your disability is principally with social functioning, and at the same time you have good language skills, people are just going to dismiss you as a jerk if you don’t learn to fit in. That’s the hard truth. To suggest that someone like me should ask for accommodations is, in my opinion, setting that person up for failure. Because when your language skills are good, there’s no external sign of disability, and you act weird — and then you make demands on people for how they ought to change to accept you? That’s a non-starter.
Silberman: But other minority groups have demanded reasonable accommodation from society, such as laws against discrimination in the workplace. Black folks did it by launching the civil rights movement, many other disabled groups have done so, and gay people — like your brother Augusten — have done it too.
Robison: The race thing is completely different. You can look at someone and right away know if they’re black or white. There’s been a huge gay rights movement, but look at what there is already for gay accommodation. I don’t think there was ever an issue of people refusing to hire gay people in most workplaces.
Silberman: Well, that isn’t true. I’m not trying to argue with you —
Robison: In the autism world, people look at your behavior and say, “He’s acting like a jerk — I’m gonna treat him like a jerk.” If you’re a gay guy and you’re a jerk, people think you’re a jerk; but if you’re a gay guy and you’re nice, people think, “He’s a nice guy.”
Silberman: Not always, but I hear what you’re saying. So, you weren’t diagnosed as being on the spectrum until you were 40. What did being diagnosed in middle age do for you?
Robison: It showed me, for the first time in my life, the underlying cause for my exclusion from society. That was a tremendously empowering and liberating thing. Before that, how could I ever know that everyone else isn’t just the same as me? People would say “Look at me, John,” and I believed I was fully complying with that request. Of course, in the opinion of other people, I wasn’t complying at all. But I had no way to know that. So that’s an example of how diagnostic knowledge can be tremendously empowering. You really have no potential to have a good life if there’s some fundamental difference between you and everyone else and you don’t understand what it is. There’s no way you’re going to integrate yourself with everyone else in ignorance.
Silberman: In the next edition of the bible of psychiatry, the DSM-5, scheduled to be published in 2013, the diagnosis of Asperger’s syndrome is probably going to go away. Instead, the umbrella of Autism Spectrum Disorder will be broadened to include folks like you. As a “free-range Aspergian,” as you put it, are you OK with that?
Robison: Yeah, I’m OK with it.
Silberman: What’s the virtue of emphasizing the continuum between people with Asperger’s and people with so-called classic autism?
Robison: The biggest virtue of pointing out the continuum is that when we do, we recognize that people can occupy different positions on the continuum at different points in their lives. One of the things that troubles people about the use of labels like “low-functioning” and “high-functioning” is that people will call a five-year-old kid who can’t talk “low-functioning,” yet a kid who has language skills, like me, but doesn’t have any friends, is described as “high-functioning.” First of all, of those two children, the so-called high-functioning kid is the one who is at material risk for suicide by the time he’s 16. Most people would not call a dead kid highly functional.
Then when we look at the so-called low-functioning kid — a large number of those kids, given the benefit of intensive speech and language therapy, acquire language skills that are indistinguishable from so-called ordinary children by the time they’re 18. So having the low-functioning label applied to that kid just serves to demean him, hold him back, and minimize the expectations that others have for him. At the same time, I recognize that there are some kids who have severe impairment when they’re 5 and have severe impairment when they’re 18, and it doesn’t change.
If we had to distinguish, how could we pick out the kids who will not grow out of their impairment? Studies show that intelligence is the most accurate predictor of one’s ability to emerge from disability. But the problem with that is that we cannot accurately measure intelligence in a child who does not have a reasonably age-appropriate power of speech, because without that, a kid can’t be expected to comprehend the questions on the IQ test.
Robison: Absolutely. If you can’t talk, you can’t get anything other than a seriously subnormal score. But some of those kids don’t have low IQ, they just have a severe language challenge, and we don’t presently know how to distinguish that among 4-year olds. So that means that we do not really have the ability to make any kind of prediction about which children will emerge from disability and to what degree. A lot of it also depends on their motivation.
Silberman: I assume that since you weren’t diagnosed until you were 40, you hadn’t met many autistic people before the book came out. Is that correct?
Robison: That’s fair to say. Although, like you and everyone else, I’d met plenty of undiagnosed geeky Asperger type people like me, who are middle aged and grew up like I did.
Silberman: For sure — particularly because I wrote for Wired magazine for 14 years.
Robison: But you’re right that I had no experience with people with severe disability who were non-verbal.
Silberman: What was the most surprising thing about meeting other autistic people once your first book was published?
Robison: One thing that was really surprising was the way in which a lot of those people come to my events and sit right in the front of the audience and make noises and gestures that I can’t understand. Yet those people are obviously paying rapt attention when I’m speaking, and it’s clear to me that they’re getting something of value from coming to my talks, because they show up again when I come back to town. Those people supposedly have little or no language, but they’re getting something or they wouldn’t have a reason to want to be there.
Silberman: Yes, that’s beautiful. One of the things that has surprised me in meeting autistic adults is how much can be going on inside them that is not apparent from the outside.
Robison: I see that and see the way that people with seemingly severe autism obviously see something in me. If you were me, or even if you were just watching me with them, it’s unmistakable. I talked to Temple Grandin about this. I told her, “I’m afraid that when I talk to groups of people with really serious autistic disability, they’re going to think I’m a fake autistic person, because I can talk so well.” Temple said, “No one with autism is ever going call you a fake autistic person. People with autism are like dogs in the park — they absolutely positively know what’s a dog and what’s a cat. A German shepherd can come up to a dachshund and he will never mistake a dachshund for a cat.” And that turned out to be true for me.
So many times, I’ve seen it in myself going the other way. All these people come up to me at booksignings and stuff and I say, “Ah, I see you’re a fellow Aspergian,” and they say, “How do you know?” And I say, “You know, I don’t know.” Sometimes they’re insulted, because they worked so hard in school, and they look so good, and they have friends and stuff. They’re almost insulted that I picked it out. But I don’t always know what it is about them.
Silberman: Maybe it’s an intuition, as Temple said — like dogs in the park.
Robison: Yeah. There’s something that ties us all together like that. Studies show that people with autism form language a little bit differently, so the cadence and rhythm of our speech is different. We also operate our motor cortexes differently, so we have a little roll and waddle to our walk. There are all these subtle things that are characteristic of autism that nobody recognized before folks like Temple and me started writing books and getting people to talk about it.
Silberman: How did you end up becoming one of the first autistic people in an official advisory position with Autism Speaks?
Robison: It happened because I read so much criticism, not just of Autism Speaks, but of the NIH and the CDC. So many people were writing online about how we shouldn’t be spending money on this or we shouldn’t be doing that. I felt like, “What do you guys want to do? Stand on the streetcorner, holding up protest signs, or do you want to go inside and actually make a difference? I frankly think you’re wasting your time protesting on the street and writing about it on a blog. If you want to change how things work, you join the organization and change it.” So that’s what I decided to do. After my book came out, all these organizations invited me. I have not spontaneously offered myself up to anyone. I’ve just responded to invitations.
Silberman: Has there been anything challenging about serving with these organizations?
Robison: No, I haven’t found it challenging at all. What I’ve found is that I’m able to absorb the general synopsis of all the funding proposals, rank them in my mind, and form an opinion. I’m very vocal. I speak up for those proposals that I think we should or shouldn’t be advancing and why I think we should do it.
Silberman: Have you ever argued for having more autistic people in these advisory roles?
Robison: Yes. I have argued for having more autistic people on the boards, but it’s not obvious to me who those people would be. I don’t have a lot of personal knowledge of autistic people with an interest in science. Most of the people in the autism community who are critical of the policies of these various groups are not people with any real interest in science, or at least they don’t express the interest in their writing that I can see. Without an interest in science, they don’t have an obvious fit with the boards.
Silberman: Your son Cubby [a.k.a. John] is certainly interested in science; in chemistry in particular. One thing that struck me when I met Cubby and Alex [Plank, founder of WrongPlanet.net] last summer was that they would probably never have been diagnosed with autism in previous generations.
Robison: I think that’s right, yeah. They’re like me. I wouldn’t have been diagnosed either.
Silberman: There’s so much speculation about why the number of autism diagnoses seems to be going up so steeply. Do you think the inclusion of people like you, Cubby, and Alex on the spectrum would cause the autism numbers to rise dramatically from what they were 25 years ago?
Robison: I’m not even sure that the real numbers of people with autism have increased dramatically from 25 years ago. You wrote that famous story about a pocket of autism in Silicon Valley [“The Geek Syndrome,” published in Wired in 2001.] But what that really means is that a guy from Michigan and a girl from Georgia both took jobs at Microsoft and met each other and produced an autistic kid. All that was really achieved by that coupling was that we didn’t have an autistic kid born in Michigan; instead, we had one born in California. So while they might have contributed to a concentration of autism by doing that, it doesn’t necessarily mean that there are more cases overall.
People will tell you, “But now there’s a kid with autism in every classroom!” First of all, that’s not a true statement. Maybe there’s a kid with autism in every three, four, or five classrooms — not in every one. And consider that many kids with significant autism would have fallen under the umbrella of mental retardation in 1910. That umbrella encompassed one in 50 children. The whole autism spectrum — including people with the Asperger’s diagnosis, who would not have been diagnosed with mental retardation — might ultimately include one in 100. So I don’t think that there’s any evidence that the numbers have really grown bigger than that.
Silberman: What are the most promising areas in autism research right now?
Robison: Oh boy, there are a lot of promising areas. I think TMS [transcranial magnetic stimulation] has tremendous potential to alter speech functionality and emotional intelligence in people. I think genetic research may give us tools to prevent the onset of some of the most severe autistic disability in eight or ten years. I think there are some tremendously promising behavioral therapies. The single most promising thing in the world of autism is pushing the age of detection from six or eight back to two. If we do that and apply intervention, a large percentage of those kids will not be disabled as grownups. That’s the most promising thing being done.
Silberman: If you could say something right now to a 14-year-old who’s just figuring out that they’re an Aspergian, what would you tell them?
Robison: I would say to look at the evidence of my life and the other geeks who are middle-aged — it gets better. If you look at the visible changes in me over four or five years, or the visible changes in Temple Grandin over ten years, we are proof that the process of change and improvement does not stop at age 18 or 21, but continues for your whole life. So there’s a very good outlook for young people.
Silberman: Do you miss anything about your days on the road with KISS?
Robison: Sure, I miss it a lot. That was some of the best times of my life, doing rock and roll.
Silberman: Were there any road stories that were too outrageous to put in the book?
Robison: Yes, there were stories that were too outrageous to be put in the book. But there are more books to come.