Woof! John Elder Robison, Living Boldly as a “Free-Range Aspergian”

John Elder Robison

John Elder Robison, author of "Be Different" and "Look Me in the Eye"

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.

Temple Grandin and John Robison

Temple Grandin and John Elder Robison see eye-to-eye at an autism conference, 2011

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.”

John Robison with light guitar, 1980

Robison with one of the guitars he customized for Ace Frehley of KISS, circa 1980. Photo by Mary Robison.

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 ofrecovering” 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 cover of "Be Different"

Robison's new book "Be Different"

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.”

Photo by John Robison

Photo by John Robison

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.

Shipping containers in port San Diego.

Photo by John Robison

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 dressed up for his birthday, age two

Robison dressed up for his birthday, age two

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.

Photo by John Robison

Photo by John Robison

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.

rocks at the water's edge

Photo by John Robison

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.

Silberman:  Right. And standard intelligence tests are biased towards neurotypical modes of perception and interaction.

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.

Railroad photo by John Robison

Photo by John Robison

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.

Photo by John Robison

Photo by John Robison

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.

Photo of a dog by John Robison

Photo by John Robison

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.

Photo of an engine by John Robison

Photo by John Robison

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?

Cubby Robison (left) and Alex Plank at Autreat 2010

Cubby Robison (left) and Alex Plank, founder of WrongPlanet.net, photo by Steve Silberman

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.

Robison and a young friend

Robison and a young friend

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.

Robison astride a tractor

Young John Robison, "one with the machine." Photo by Mary Robison.

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50 Responses to Woof! John Elder Robison, Living Boldly as a “Free-Range Aspergian”

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  2. sonia Roach says:

    I just watch Mr. Robinson’s story it’s like watching my father’s story it broke my heart he feels so confused as to why people react the way the do and feels frustrated when does things or say things he shouldn’t. He is now 67 all the years. I’m even more consirned I have a son who has been diagnosed originally autistic now asbergers syndrome. I would love for my dad to meet Mr. Robinson!

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  6. Janis says:

    Just found this — every time I see these articles I want to scream. I don’t have Asperger’s to my knowledge or autism. I have temporal lobe epilepsy. And despite my brain being almost the polar opposite of an aspie in every way, I can relate to so many of these things, and despite this, the stigma and fear of people about the word “epilepsy” has kept me from connecting with anyone else with this. People will rip your civil rights away from you if they hear the E-word. If you are living well and well-employed, they will PUT you on the streets, no matter if you are no danger to anyone else. It’s almost as if they are offended at the idea of someone who is neurologically odd outdoing them. If you are going to have a peculiar, broken brain, then by god, they will make sure you are begging on the streets, like you should be.

    I don’t have trouble with faces; I can recall them years after seeing them. I’ve taken tests for prosopagnosia and ended up scoring 100% reliably. “Normal” is 80-85%. My recall for faces is as eerie as Robinson’s absence of recall. I have trouble making eye contact only because once I make it, I can’t seem to break it off and people get spooked by it. I am synaesthetic with scents, textures, tastes, and colors with mathematics and languages. I pick up languages like people pick up colds. At the age of 44, I began writing music cold with no experience in it — the result was that no one believed I had done it. I’m not rocking in a corner playing with rubber bands, so I can’t do that is the image in most people’s minds.

    He can’t start a social interaction, I can’t figure out how to END one. Both of us are isolated by it. I prefer the company of my cat and my piano — when she scratches me, she doesn’t mean anything by it, and the piano delivers for me depending on how hard I work. There’s nothing ulterior about them. I’m not language disabled, I’m almost incapable of not writing or speaking although I have trouble speaking off the cuff without sounding like a stroke victim since it’s hard to translate the tinkertoys in my head into linear words. Stepping through a 3-d shape in a linear fashion is unbelievably difficult.

    And yes, the isolation gets to you after a while, the fact that I’ve felt like Jane Goodall most of my life is how I put it. Surrounded by these strange elongated monkeys who I don’t understand. I always felt like when I was born I got off on the wrong world somehow. And yes, when you hit middle age and realize that it’s always going to be like this, no one else is like you, you can’t afford to take the risk of connecting with others like you, and it will be like this until the day you die, it can be really really hard to keep going.

    But it’s not Asperger’s, it’s not autism, and it’s not even the sensationalist picture of temporal lobe epilepsy of people who run around outside without clothes and say they talked to God. It’s just a constant, neverending, persistently different way of looking at the world, needing social interactions that the rest of your species is incapable of providing and going without for your whole life, and not being able to connect with them in the deep level you crave. It’s exhausting, and I’m sick of it. Sorry for the rant. I love what my brain can do, because it sure can do a lot of great things, but I just wish a few other people were more like me. It’d be less lonely on this side of the fence. And given the way the world reacts when they hear the E-word, I will probably never be able to “come out” as having it. There is a big part of me that envies the aspies since people who who and what they are. What are we with TLE — lobies? We don’t “come out” unless we want to be forcibly medicated, so we just live and die one by one, alone.

    • Kathy says:

      Janis, You are so very gifted. I understand the prejudices and difficulties you speak of at least a little bit as I have an Autistic twelve year old and have slowly watched “friends” turn away from us in various ways. But there are a few people out there who are truly loving and compassionate and I hope you may find a few you can call friend. If it were not for the Jesus of the Bible and his love I would not have survived this. I hope and pray you will find comfort and purpose in your giftedness. I wish I knew you.

  7. Thomas Allen says:

    I hope tms get used more in future.

  8. Esther Gomez says:

    The first book that I bought for my husband after realizing that he has AS the day that our daughter was diagnosed with it just three years ago was the Look Me In The Eye. It helped my husband to feel free to be different and appreciate his differences from others. Will definitely buy this book this time to help my now teenage daughter to prepare to make this world a better place to live for her.

  9. Alice says:

    I just want to thank you John and Steve for sharing this story. I started reading the article because of my personal interest in psychology and finished recognising that my 6yr old daughter is a free range aspergian.
    I love John’s photographs too, they really provide an insight into the visual world of an aspergian that written descriptions cannot.

  10. Caroline Narby says:

    Reading this interview–and seeing how problematic Robison’s views are–partly inspired me to read his book. Since I found it profoundly disappointing, and it’s been getting overwhelmingly positive reviews so far, I posted my own review over on the Community blog at Feministing:

  11. L.R. Weizel says:

    I notice things get awkward at one point, where they talk about society accommodating autistic people or the other way around, and he calls it unrealistic. I think that’s kind of unfair because it makes a number of assumptions, first off that these accommodations are difficult to make (some are, some might not be) and second that these accommodations won’t have a net benefit for others – autistic people aren’t the only ones with social difficulty so understanding aspergers and autism could lead to a more understanding society in general that takes into account someone’s condition before judging them.

    I don’t think that’s “science fiction and fantasy”. I think it’s societal advancement. Autistic people like this guy can be a great resource, they’re not all useless like me, so it’s a good investment.

    I think maybe John has taken an attitude that rings through with his life, but not everyone with aspergers and autism have an amazing talent and the ability to see it through. He is quite lucky in many ways.

    I’m an even smaller minority than a regular autistic anyway being transgendered – I don’t think we should be not catered to just because we are so small when what we ask for generally makes no difference to anyone anyway. And like with Aspergers, you can’t always tell what’s up with someone right away as many of us do pass (but not always fully).

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  14. Barbara says:

    “But some of those kids don’t have low IQ, they just have a severe language challenge”

    I struggle with this line of thought every time I read it. Without language, what is ‘intelligence’? How do you define ‘intelligence’ if not with language?

    • Steve Silberman says:

      The histories of art, dance, music, navigation and so on suggest that there are many types of nonverbal intelligence.

    • Esther Gomez says:

      When my daughter was 2 to 3 years old, my husband and I observed daily that she was “smart;” in fact really smart. But other people had other views because she did not talk until she was 3 1/2. What she made out of her wooden blocks i.e. cities complete with bridges, buildings, and houses, and how she put together puzzles, were obviously beyond what children her age could do. She demonstrated her intelligence through what her hands could do. She was diagnosed with AS only three years ago, at 10.

    • Carolyn Pipes says:

      Intelligence can be measured non-verbally with puzzles or pictures. It is difficult but not impossible. I’m an RN working with developmentally disabled people. I observed a psychologist testing a young man that could not speak but he could use a clicker to indicate a choice between pictures 1 through 4 to define a word. I thought Jack was smart but I had no idea how smart. The words and matching pictures were quite difficult. (precipitation, enticement, contrite) I was warned not to speak but when Jack made a wrong answer I could not help commenting some sort of placating encouragement. The psychologist smiled at me and said, “Well Jack got it right but you obviously didn’t!” Afterward, every time I saw Jack he reminded me that he was smarter than his nurse by smiling and tapping his forehead. Intelligent people are much more behaviorally challenging and get frustrated, depressed and frequently act out.

  15. Christine Goepp says:

    Great piece! On the issue of whether society should be more accommodating, I think it can. There is a gap between “normal” and extremely disabled that many, if not all, people fall into. Even if we did not undertake formal accommodations for all types, we can and should raise awareness of human variation, particularly invisible conditions. On the train, I once heard a man have to explain his underlying neurological condition in order to get a handicapped seat. Because he LOOKED “normal,” the person in the seat was unwilling to credit his claim. We must be educated to look with more sensitivity at those around us and think, that person may have anxieties, that person may be deaf, that person may be OCD, that person may be autistic. There’s a lot going on under the surface, both mental and physical.

    We should learn to truly value, not just have compassion for, these differences. Autistic people have always had an important role to play in society. The crack is how the light gets in (L. Cohen). A homogenous society, that was not fueled by the different perspectives, angst, and insight of what it now considers its fringe members, would be a stale and stagnant place.

  16. Dana Weber says:

    The pictures are also just beautiful and fascinating. They correspond to the interview poetically. I surely would have loved to have been at the table that night at dinner.

    Thank you both for the conversation.

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  19. todd m says:

    Re: “it gets better” – no, for a lot of people, and based on what I’ve seen so far in aggregate as well, it gets worse more often than it gets better. It’s not without good reason that many parents of autistics worry so much about what will happen to their children when they are gone.

    Next to jail, Dawn Prince-Hughes is probably right that the streets are the worst place for an autistic to be.

    Many of us cannot realistically be expected to be able to obtain employment and keep it, and at the same time do not qualify for any help in the places where we live. We need things like job placement programs that will match us with the things we are compatible with, and where there is somebody we can contact who understands us that we can turn to negotiate certain circumstances that may arise.

    • Esther Gomez says:

      With your reply, I vow to make the world a better place for my teenage Aspie daughter, and to prepare her to be successful in life overall. I hope that things will work out for you to enjoy the perks that AS brings.

  20. todd m says:

    I think that his Robinson’s response to the question about changes is society is pretty terrible.

    At IMFAR there was one presentation about a study on ASD outcomes in adulthood. If I remember right it was conducted in the UK. The number of people with jobs and able to be self-supporting was I think 32%.

    In the United States the level of employment and labor protection is atrocious and there are not adequate social safety nets.

    JER is the only guy like himself. There are a lot of autistics who don’t *look* very impaired, but are. And many common autistic differences can easily be accommodated on an informal basis if there is understanding – but you need a structure to make sure that happens.

    Somebody who makes a living selling extremely expensive cars and bestselling books and who mixes I’m guessing mostly with people in the top 5-10% is not likely to have any idea what things are like. (I’d also note that he entered adulthood just past the peak in wages in the US, and since then things have gone way downhill – and probably a number of the sociopaths involved in inflating the real estate bubble, blowing up the world economy, and making a killing off of it, are among some of his more recent clients.)

    Many people might be quite verbal much of the time but unable to communicate at all when a situation becomes emotionally fraught – and that matter. Autistic inertia can have a huge impact. Sensory issues are involved at many levels.

    Jane Meyerding has a better answer:

    “If people on the autism spectrum all “came out” and worked towards increasing institutional flexibility to the point where our “special needs” could be accommodated, the world would be a much more comfortable, less alienating place for everyone else as well. Such a world would be one where the individual got to decide whether the lighting in the workpl ace was impairing her ability to function. Where bosses would be expected to negotiate with employees the manner in which information and orders were exchanged. Where “the market” would not enforce the notion that being part of a romantically-based couple was the way to become “adult.” Where seeking assistance with certain aspects of daily life was not seen as an admission of incompetence. Where it would be as normal for children to have different learning styles as it is to have different colors and textures of hair.”

  21. Christine Rinehart says:

    My young nephew is a free-range Aspergian. I have passed by dozens of books recording individual experiences with Asperger’s- but something about this one really called to me. As Robison states: “…people with autism can be so different from one another and yet the same.” I could “see” my nephew in story after story from his book. I kept texting my sister with snippets and finally just sent her the book. I told her that if it was as good as I thought, I was going to buy a dozen of them and encourage all the teachers that I work with to read it. She responded and now I am buying a dozen for both my schools and to make available in the library for my high school students!

    • Esther Gomez says:

      Kudos to you, for wanting to make the world, at least your part of the world, a better place for your nephew and my daughter.

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  23. I read Elder Robison’s book and found many of his stories to mirror my own experiences. The thing is, many people believe that there is only one valid way of being and only one valid way to success, when in reality there are many. Like Robison, I grew up with a fascination with technology, but in my own little bubble. I never had any interest in social communication, and I never considered it to be a problem. Consequently when I was diagnosed, I chose to live in denial for years.

    I just ended up getting rather depressed, worn out by the mental load of constantly trying to hide my differences. But later I accepted myself as I was and stopped seeing my differences as a problem. A whole new world opened up. The world is full of possibilities, but you cannot see them while hiding under the cloak of normality.

    I do not believe that we should be trying to cure autism at all. It’s a massive moral problem, once people start detecting or ‘curing’ autism in young children who are most affected by the condition, where do you stop. Unfortunately the world is not a level playing field, people can be compelled to make particular decisions based on the agendas of those in power. Once one starts ‘curing’ lower functioning autism, it’s a short road until we are trying to eliminate all diversity from the species, not something we should be aiming to do. If we value our future that is.

    • Mandica says:

      I so wish my book was in print, right now, and all the parents like you could read it. There’s such a need for imnirfatoon if autism or Asperger’s touches your own family.I thought very, vary hard about the ideas expressed in the book, and I leanred a great deal about myself in the process of writing it.Where do you stand with your own book now?

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  25. Jerome Rainey says:

    “It gets better” — very nice.

  26. “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.”

    I already have too much to do, including as a reviewer, but am fascinated by this and J E Robison’s related claims about autistics and autism research. In fact am speechless.

    • Monica says:

      I also wish I had the time and energy to research his claims because they felt off to me. However, I love so much else of what he says.

      • Steve Silberman says:

        I know what you mean, Michelle and Monica, but to avoid harshing on John too much here, I think he was speaking casually — not making researchable “claims” about autistic people’s aptitude for science — and I think the phrase “personal knowledge” is crucial: “I don’t have a lot of personal knowledge of autistic people with an interest in science.” I would take that statement at face value. That was the point I made gently in the interview about John’s son, Cubby, who is profoundly interested in science.

        • Don’t know what “harshing” means, sorry. I was and still am genuinely fascinated. JE Robison provides huge amounts of insight with respect to how things work in Autism Speaks and elsewhere. No point in saying anything but wow…!

          • tizzielish says:

            I was unfamiliar with the word ‘harshing’ but I have good verbal skills. I was able to understand what Steve Silberman meant, I believe, when he wrote ‘to avoid harshing on John too much’ he meant ‘to avoid criticizing the guy harshly’ or, perhaps ‘to avoid dissing the guy’ or ‘to avoid being unduly critical of the guy’ . . . I assume, Michelle Dawson that since you say you are too busy as a reviewer to research Robison’s statements reflecting some of his clearly personal opinions — opinions being an operative word — I am surprised that someone who is a reviewer — a reviewer of books? a reviewer of data analysis? — would not have some intrinsic language skills and an solid grasp of American English to not understand that ‘to avoid harshing on John’ mean what it obviously meant. I am belaboring this because it seems a little aspergy to me to go blank on Steve’s vernacular use of ‘harshing’.

            • tizzielish says:

              oops. . Michelle, after I wrote my first comment, in which I suggested that maybe you had some autism spectrum disorder if you didn’t understand ‘avoid harshing’ I clicked on your name and see that you write about autis spectrum and although I don’t know if you are or are not in the autism spectrum disorder, I see that you must be knowledgeable about this topic. I ertainly am not knowledgable. I have a personality disorder, definitely not autism spectrum, at least not according to some very qualified experts. I have borderline personality disorder (BPD)and I have been treated by Dr. Marsha Linehan who is one of the world’s leading expert on BPD. I had considered, before my treatment with Linehan’s clinic, that maybe I had an autism spectrum disorder. One characteristic of BPD, for some, but, of course, not everyone with BPD, is the person thinks in rigid black and white. This might seem like a light disability but it is quite debilitating. I can look at people’s faces and read emotions. I can’t be flexible when I interpret things or when something hurts me emotionally, I can’t just change how I feel. Very very few people believe my rigid thinking is something I can’t just let go of if I really wanted to. Heck, I thought until around age 50 that I should be able to change. It was only after a clinic that is unequivocally expert at diagnosing BPD that I accepted ‘hey it is not my fault I am this way, I really do have a disability’ and it has been a hard daily slog to figure out how to accomodate it. I have become fairly skilled at negotiating accomodations with people that know and care about me but I can’t form new relationships easily. It can be excrutiating to interact with someone I don’t know. One example: I become much more emotional than most people over things that I know, intellectually, are very trivial slights. I know this but I can’t stop having the intense emotional reaction. If I am with people I know and trust, I have usually negotiated some understanding and accomodation of my disability. Linehan’s goal for BPD’s is to help them live a life worth living because the lives of most BPD’s is constant emotional agony and part of the agony is no one believes you are actually suffering. I don’t really live a life worth living.

              • Esther Gomez says:

                Wow, didn’t realize that BPD is almost like AS as far as the black & white thinking and overpowering of emotions are concerned. Since my daughter was diagnosed three years ago and I had a change of “heart” towards my daughter (definitely from the Lord), every time I encounter episodes from her that before I would consider irritating but now understand it, I remind myself of her black and white mind and now I am the one who accommodates her, because just like you said, it’s not her fault. Now I understand that it’s the way she thinks and that she cannot change it anymore–I can change and so I did. I hope more people will understand your struggle, especially those who are around you most of the time.

            • Steve Silberman says:

              Michelle Dawson is one of the most brilliant researchers in the field of autism, and is autistic herself, so I can totally understand why she was taken aback by John’s comment about not having “personal knowledge” of autistic people who are interested in science. But as I said then, I think it’s best to take the phrase “personal knowledge” very literally.

    • Dimas says:

      Kim — I so wish I could’ve met you in NY with Pat for breakfast. She told me all about it. I plan to be in NY in late June and if you were able to take the train in, I’d buy lunch! :)I’m 6 mohtns away from finishing my 4th novel, titled Penguin Hill, and would give ANYTHING to have you read it and offer your input when it’s done. Pat’s already offered to read it and because the main character is cognitively challenged (something I have no background with) I worry about him sounding AND behaving authentically, although, I must admit, I have no idea where his voice came from, but he’s the most endearing soul…John — “They tell me the “average reader” is a mom, 42, with 2 kids and a burgundy minivan”. Hey, I fit that demographic in many ways myself!! I’m 43, with 2 kids, but I drive an SUV. No burgundy minivan for this author!

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  29. Lorie Johnson says:

    As a middle-aged woman who is coming to terms with my own Aspergers, I find Mr. Robison enlightening and very encouraging. Looks like I’ll need to add another book to my reading stack.

    Aspergian females often have harrowing experiences in their youth because of that inability to ‘read’ people. And the whole social aspect is tougher for us because women are expected to be ‘social’ and are disparaged when we aren’t. I do hope that there will be more focus on adult women in the future- we have a great champion with Temple Grandin, but we’re still far too uncommon.

    • Pat says:

      Just want to thank you for this article. Read it and gave it to my kids to read so they may understand me a bit better; and perhaps forgive some of my words and behaviors.
      Also, to agree with Lorie Johnson, as I have a barn full of bad or horrible social experience memories and reactions to rake out and deal with.

    • Esther Gomez says:

      Am starting a group of teenage girls with AS (my daughter being one of them) & in the future, would like to be in contact with adult women with AS. I hope to find some in our area who are knowledgeable on what female Aspergians go through because of their own personal experiences.

  30. Niksmom says:

    Fabulous interview with JER! I’m curious if you have any information about what studies he was referring to in his statement “Studies show that intelligence is the most accurate predictor of one’s ability to emerge from disability. ” This piqued my interest as I have a nonverbal child with multiple disabilities but who has shown how incredibly clever and determined he is; he has incredible problem-solving skills. I’m always on the lookout for sources of information and hope. Thanks.

  31. Corrine Lund says:

    Love your insights. Have you ever been in a situation, like I have, where the Mean Girls of the Inner Circle AKA the Bitch Clique have told one it’s “not your place”? Twice. Adult women! Not sure who has a social disability. Like teenage girls can’t see Social Shunning; learning from their mothers.

    • Lorie Johnson says:

      Women can be vicious. And when you have a hard time parsing at speed and trying to see if the face matches the words and/or voice, it’s even harder to make sense of things.

      I’ve learned NOT to be helpful or volunteer when I do not have a working pattern grasp of the parties involved. Too many scars from doing otherwise.

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