In my previous post, I wrote about Brian Hughes, former president of the worldwide MIT Alumni Association whose wife is also an MIT grad, and whose son Richard was diagnosed with Asperger’s Syndrome at the age of 13. Hughes had raised the question of whether the children of dual-STEM couples are any more likely to be on the autism spectrum than they otherwise would be, and he shared his experience as a parent of a child with Asperger’s.
I subsequently had the opportunity to speak with Richard Hughes, and came away with an extraordinarily enlightening and informative perspective—one that had eluded me even after years of writing about Asperger’s Syndrome in the IT community. An engaging individual with a ready sense of humor, Hughes is also an MIT alumnus, having graduated with a degree in electrical engineering and computer science in 2008. He’s now working as a quantitative software engineer at EverQuote, a startup in Cambridge that serves as a car insurance broker and advertiser. I opened the conversation by asking Hughes about his work, and he encapsulated it this way:
The goal is to use Big Data about the car insurance industry, and our customers, to connect people who need car insurance with people who have car insurance to sell, in a way that improves the situation for both of them. So we add value. … I’m challenged in my role. I’m facing interesting technical problems. The work I’m doing is morally upright and not inappropriate for my principles. As a person, I don’t feel obliged to wrap my whole identity in what I do for money, to make a living. Is this what I really wanted to do with my life? Probably not. But I don’t look for that in my job.
I introduced the discussion of Asperger’s Syndrome by recalling an interview I’d done several years ago with a well-known individual who is widely understood to have Asperger’s, but who insisted in response to my question about it that that wasn’t the case. I told Hughes that raised the question in my mind as to whether individuals with Asperger’s tend to be in denial of it. I asked Hughes for his thoughts on that, and he responded, legitimately, that it was an awkward question to be asking him. He explained why:
I feel there’s not much in the way of an answer I can give you that doesn’t tie into the narrative that’s being established by it. If I say, ‘Yes, people who are on the spectrum tend to be in denial about it,’ that’s a pure assertion. If I say, ‘No, I don’t feel that people who are on the spectrum are in denial about it,’ I feel like that will sound like I’m in denial about it. But more seriously, I feel like there’s a reluctance to be associated with it as a defining characteristic of yourself. There are people who have it to a degree, and there are people who don’t. I mean, its definition is already in flux—technically speaking, Asperger’s Syndrome doesn’t exist. It was defined out of the [Diagnostic and Statistical Manual] not long ago—now it’s just “High-Functioning Autism,” or just somewhere on the autism spectrum.
If you ask me to say whether I’m on the autism spectrum, yeah, obviously—I exhibit quite a few of the personality traits. But words are just fingers pointing at the moon, and the world is what it is, regardless of what we define it as. Asperger’s Syndrome and autism are just words. You have to cut past that to get to the real issue.
I asked Hughes if he recognizes autism spectrum-related personality traits in other people—that is, whether he can identify people he meets as likely being on the spectrum. He responded that he sometimes feels he can, but not in the sense that he would be comfortable using it as any kind of diagnostic tool:
I certainly see traits in people that are described as being associated with autism. I don’t know if I would actually be able to say whether it was evidence that someone was on the autism spectrum or not. …There’s an ongoing theory that people on the autism spectrum have an impeded theory of mind, compared to neurotypical people, which is to say they’re worse than neurotypical people at estimating the motivations and inner life of other people. But there’s a competing theory I’ve heard, which is that we’re not actually much worse at it, when dealing with other people who are on the autism spectrum.
Our intuition tends to be more reliable in that case, comparable to that of neurotypical people when dealing with other neurotypical people. So the thought is not that neurotypical people are innately better or worse than us, or vice-versa, at theory of mind. But rather, they have an advantage in that almost everyone they meet has a similar mode of consciousness to them, whereas people who are on the autism spectrum almost never have to do the theory of mind tests with other people who are on the autism spectrum. I actually have no idea whether that’s accurate, but it’s worth looking into.
I referred to an article that Hughes’s father, Brian, had written in 2003, in which he asserted that “our son learns social skills with the same difficulty most people learn math, and he learns math with the ease that most people learn social skills.” I asked Hughes about that, and he said it was a reasonable analogy:
I have come by my social skills very mindfully. They’re something I’ve had to put thought into, and consciously develop—they’re not something that happened by accident, or intuitively, as seems to happen for a lot of other people. I feel like my social skills have developed into a reasonably well-rounded skill set. But his description of how I picked up those skills is quite apt.
I had learned from Brian Hughes that his son had scored off the charts in intelligence tests as a child. So I asked Richard a probing question: If it had been an option for him when he was growing up for his social skills to be more in line with those of the general population, but in order for that to happen, his cognitive skills would have to be more in line with those of the general population as well, would he have taken that option? His response:
Early in my life I might have made that decision. But by middle school or later, no, I would not have. I was comfortable in my identity, and asking me to cripple myself in one way, to lose a skill I knew I had, in order to gain a skill that I had so far muddled through without, would not be something I think I would have wanted to do. If I could have had both, that would have been lovely.
So is Asperger’s Syndrome a disorder that needs to be cured, or are we just talking about a set of character traits that happen to be atypical? Hughes made an insightful analogy in his response:
You can pathologize something, or you can not pathologize something. For a long time, homosexuality was treated as a psychiatric disorder, and then that stopped being the case—not because homosexuality changed, but because our perspective of it changed, and the context changed. Likewise, Autism Spectrum Disorder became more viable for a variety of reasons, as our society changed.
People with those personality traits are more comfortable than they used to be, not because they’ve changed, but because our society has changed, and given those skills the opportunity to be applied. In this sense, the reality here is not the debate over whether autism is a disorder or a character trait. The issue is whether there’s a meaningful distinction between those words in the first place. Is there anything inherent about autism, or any characteristic of ourselves, that makes something a disorder, as opposed to a personality trait?
I asked Hughes if he feels he’s been handicapped in any way, personally or professionally, as someone who has been diagnosed as being on the autism spectrum. He said it doesn’t come up much:
It’s not something I put on my resume. Do my residual social awkwardnesses, and my faux pas, and the way in which I slightly disjoint from mainstream forms of thought, cause me trouble? Generally speaking, not so much, but they have in the past. But the thing is, I can’t say with any confidence whether the things that have caused difficulties in my life are elements of my personality that can be pigeonholed under my autism spectrum disorder traits, or the rest of me. Because I’m an eccentric human being who’s benefited from a lot of fortunate opportunities growing up. So the question is, is it the part of me that’s just me, or the part of me that can be put underneath this category? I couldn’t say.
Finally, I asked Hughes what he sees as the biggest misconception that the general population has about individuals who are on the autism spectrum. He said it’s the notion that people on the spectrum are smarter than average:
In my experience, it’s a different mode of thought, but there’s no particular association, I would imagine, between that and high intelligence. A lot of the traits that we associate with Autism Spectrum Disorder, or with nerdiness in general, aren’t necessarily associated with high intellect. They’re just associated with being interested in things that are less physical, I suppose, and more patterned. There’s nothing the average autistic person does that is in any way intellectually above that of the average neurotypical person.
I am exceptionally intelligent, but I don’t believe that has much to do with my Asperger’s Syndrome or Autism Spectrum Disorder. I feel that some of the way my intelligence has expressed itself is shaped by my being on the autism spectrum, and having an affinity for word shape and pattern visualization. I feel like if I had been less intelligent, my intelligence would still tend toward that direction, but it wouldn’t have been so noteworthy. The fact of the matter is, I’m not an expert in this stuff in any real way. I am this stuff. You’re asking a fish about water.
A contributing writer on IT management and career topics with IT Business Edge since 2009, Don Tennant began his technology journalism career in 1990 in Hong Kong, where he served as editor of the Hong Kong edition of Computerworld. After returning to the U.S. in 2000, he became Editor in Chief of the U.S. edition of Computerworld, and later assumed the editorial directorship of Computerworld and InfoWorld. Don was presented with the 2007 Timothy White Award for Editorial Integrity by American Business Media, and he is a recipient of the Jesse H. Neal National Business Journalism Award for editorial excellence in news coverage. Follow him on Twitter @dontennant.