A Nuanced Way to Look at Autism and Niche Interests

Photo: Olja Merker/Getty Images

In 1943, an Austrian-born doctor published a paper detailing intimate case studies of 11 children afflicted by a “unique syndrome.” The report, penned by Leo Kanner (a pioneering shrink who also happens to be the founder of this country’s first child psychiatric clinic), kicks off with material from a 33-page letter he received from the concerned father of a preadolescent boy named “Donald T.” (Not to be confused with that other Donald T.)

Donald’s dad gave the doctor a detailed account of the unique way in which his son was developing. “He has never had a normal appetite … Seeing other children eating candy and ice cream doesn’t even tempt him.” The boy took no delight in Santa Claus, and was generally horrified by the usual stuff of childhood: When his father installed a slide in their backyard, Donald retreated from the ominous structure, visibly terrified.

Nevertheless, Donald had some interesting skills. His memory was impeccable; in particular, he was a pro at recognizing faces, whether those faces belonged to former presidents or his very distant relatives. He loved exclaiming sophisticated words: chrysanthemum, dahlia, business, and trumpet were his favorites. He loved what he loved, in other words, and, as Kanner discusses in that now-classic paper, “he showed no initiative in any form of activity other than the limited ones in which he was absorbed.” The rest of the children described in Kanner’s case studies were similar. Many enjoyed their own company, were fascinated by the mechanics of toys or vehicles, and were generally happiest when left alone to play.

While autism wasn’t officially recognized in the DSM as a distinct disorder until 1980, Kanner’s description helped shape the way the medical community approached the niche interests that people “on the spectrum” tend to develop. For many years, these “circumscribed interests” — say, an interest in electrical appliances, or trains, or algebra — were seen as restrictive. “Historically, much of the language around preferred interest areas has been deficit-focused,” said Lauren Hough Williams, co-author of a recent study challenging this line of thought. “There has been a tendency to pathologize these interests as ‘restricted,’ ‘circumscribed,’ or ‘perseverative’ in nature. There is the perception that engaging in these interests negatively impacts adaptive behavior and can even undermine social success.” As a result, she continued, “these interests are discouraged, rather than being seen for what they are: authentic passions to be embraced.”

For the study, published recently in the journal Occupational Therapy in Mental Health, the researchers surveyed 80 adults with autism — ranging in age from 18 to 70 — about their current and childhood passions. The results were clear: 92 percent of those surveyed said their interests helped them feel calmer, and many of them even “referred to their preferred interests as a ‘lifeline’,” Kristie Patten Koenig, lead researcher of the report, said in a statement.

Patten Koenig, who chairs the occupational therapy department at New York University, told Science of Us that her focus on embracing niche interests was born following a shift in her own thinking. After developing educational training materials for the state of Pennsylvania, in 2005, she and some colleagues from Temple University decided to interview adults with autism to bring her training sessions to life with first person stories. She spoke with a wide range of people on the spectrum, and concluded that the “deficit model” — which tends to regard in a negative light the deep, preferred interests some people with autism develop — was at best myopic. At worst, it was incredibly damaging.

For example, she met with people in their early 20s who had gone through special education services and still had no idea what their strengths were, or, more troublingly, viewed them as bad because professionals had told them that their interests set them apart from their peers — put more plainly, that their interests made them straight-up “weird.” “Instead of focusing on their interests and the ways that they engage with them as a means of communication and connection, educators often worked to correct the restricted interests and sought to eliminate them in an effort to assimilate one into ‘normal’ society,” Patten Koenig explains.

Her new report suggests that many people with autism rely on their passions for happiness and intellectual stimulation. Consider a nonverbal person with autism who really enjoys looking at credits on the TV screen. Maybe their interest in TV credits was purposeful, and taught them the structure and function of words. Is there a therapeutic element to this interest? Can it lead to teaching an alternative communication system, knowing that there is an interest in letters? How do we even discover the importance of these interests to those who can’t communicate using language? What positive ways can we explore someone’s fascination with TV credits? The questions, to Patten Koenig’s mind, are almost endless, and as yet underexplored.

And what if people actually adopt these DIY learning models as a way of adapting to unhelpful, or even hostile, educational settings? “That was the moment where I thought, ‘Wow, we have really got it wrong here,’” says Patten Koenig. “The implications for learning are … huge.” A recent documentary, in fact — Life, Animated, which was nominated for an Academy Award this year — explores this very idea. It’s based on a book by Ron Suskind, father to Owen Suskind, and it shows how Owen’s family harnessed his passion for Disney movies as a learning tool.

A key finding in this new study was the contrast between the positive way the autistic individuals they interviewed spoke about their interests, and the negative way they’re often seen by the rest of the world. When someone with autism looks back over their lives, they usually associate their passionate interest in say, space, animals, algebra, or cartography with positive things like balance or relaxation. Maybe if parents and educators encouraged these interests, we could improve the postsecondary outcomes for those on the spectrum. And contrary to the stereotype of the math-obsessed shut-in, those with autism often have a wide range of interests which change over time.

As others have pointed out, the deficits-as-strengths framing may not apply to everyone with autism, particularly those who have it in very severe forms. (As the saying goes, if you’ve met one person with autism, you’ve met one person with autism.) Additionally, not every family may have the necessary resources to help their child pursue their niche interests, at least not to the same extent that higher-income families could. Still, to researchers like Hough Williams and Patten Koenig, the questions facing parents and educators are clear: Will I reward my child for suppressing her deep interest in, say, mythology, or will I encourage it? Does suppressing her interest cause anxiety and fear? What positive role does this interest have in my daughter’s life? How can I view this interest as a strength and avenue for developing competence?

Here, four people with autism — and one parent of a severely autistic adult — share their stories with Science of Us.

‘Coming Home to Play the Piano Was Self-Therapy’

When I was a kid, all I did was play the piano. My parents got us this little toy organ when I was in kindergarten and I started composing music, even on that toy. Then, in third grade, I got a real piano. I played this thing every chance I possibly could, driving everybody crazy.

When I was about 11 my obsession climaxed. I would use a black marker and draw ‘keys’ on my desk at school so I could sit there and ‘play’ the piano in my imagination. One day our class was going to go on a field trip. There was a lot of commotion — people talking amongst themselves, quite loudly, waiting to leave and get on the buses. As usual, I retreated into my ‘own little world,’ sitting there and playing that imaginary piano. I felt a hand on my shoulder — it was my teacher. I looked up, and everyone had left, I just had no idea.

My school years were framed by persistent bullying (I can’t speak very well and I was almost sickly small) so the piano became my refuge, my happy place. I’d try to ignore the bullies, but you get to a breaking point where you have a meltdown. (Meltdowns are so hard to explain, but from the outside, it looks like a temper tantrum.) Coming home to play the piano was self-therapy.

By high school there were music camps, and I got so good I was able to tour Europe with an orchestra. But when I left for college, it was like the light switch turned off. I haven’t touched the piano much since then.

I guess I stopped playing around the same time I started riding bikes. I was an ultramarathon cyclist for about five or six years. I spent my graduation money on a Raleigh road-racing bike. I got in with a bike store with a racing club and I rode and rode. The feeling of riding my bike was quite similar to playing the piano. It made me feel capable, and like there was a place that I fit in.

I’m also obsessed with maps and geography. I have this ever-growing list of off-the-wall places I’d love to see. The newest I’ve discovered is a really small group of islands in the North Atlantic between Sweden and Iceland. My vacation planning drives my wife nuts. Everybody else is like, “Who cares? We’re just gonna go with it.” No, I need to know! Once I know what hotel I’m staying at, I’d get on Google Earth so I could see what kind of setting am I going into.

Without having these interests to occupy my mind, things could have been really bad.

Piano is probably the best example. That led to being in a band and a place where I belonged — unlike everywhere else, where I didn’t and constantly felt like I had to “pass.”Ron, 48. Ron was diagnosed with autism and social phobia at 45.

I Once Communicated by Reciting the Names of All My Children Characters

There was a period in my life when people would ask me how I was and all I could say was “Cinderella, Snow White, Sleeping Beauty.” That would be the extent of my conversation. My mom loved the this soap opera called All My Children. She taught me all of the characters’ names, and I could remember them in the opening credits. So the book of All My Children would open up and I’d go, “Adam, Haley, Dimitri, Palmer, Joe, Ruth, Cara, Jed,” and I’d always scream out when Susan Lucci appeared, “Erica!” That was my way of communicating.

I’m 28 now, and I’m determined to sing and act, no matter what. It does kinda suck to be so stubborn — I don’t have a backup plan, because I love it so much. But acting really helps me in my life.

My dad was an Episcopal priest — being a preacher’s kid is like being a celebrity in the church. Everybody knows who you are. When I was 15, one of my dad’s parishioners wanted to talk to me, but I wasn’t in the mood. It wasn’t anything personal, I just wanted to be by myself. But I told myself to act. I have to act like I’m interested. Let’s make some eye contact, a smile, participate in the friendly back-and-forth banter. Then she went on her way. I remember my dad said, “A couple years ago, you weren’t able to do that.” George, 28. Diagnosed with Asperger’s at 11.

My Severely Autistic Son Loves Olive Oil. So … We Bought an Olive Farm.

When my son, Toby, was poised to leave high school I thought, I can’t let him fall off the cliff. I work in education, so I knew how often that happens. I tried to think about what he liked, and where he flourished. He’s completely nonverbal and his academic ability is probably the same level as a 3-year-old’s. But he can learn to do physical things, and he can understand you. I taught him to cook, and he can make about 25 recipes from start to finish. He learns by repetition.

I’ve always cooked with butter and cheese. But once, when Toby was about 8, we were on vacation in France, and we were served pasta with olive oil. He loved it. After that — everything was olive oil. He ate it like a Mediterranean, dipping-in-bread-style. So when I was deciding what we would do with adult Toby I kept thinking, olive oil

Then we did something radical. We sold our flat in London, bought this ruin in Luigia, and set about becoming olive farmers. When we took away all the things that gave Toby anxiety, he flourished. There’s a lot he can’t handle, like exterior noise or sudden movement which he can’t filter out. So ever since we moved to the olive farm, he’s relaxed, he’s happy, he really relishes life. Put him in the other context, where he can’t cope, he becomes stressed. I will see him bending his fingers or acting up.

Once you get to know him, you can distinguish between stressed or anxious vocalizations and happy, relaxed, joyful ones. When he’s out in the olive groves, he’s really happy. He loves picking olives, and collecting the olives in the boxes and carrying them to the truck. It’s an essential achievement. He can see what he’s done.

I know we are lucky – we had the resources to do this, and that’s so important to stress. But I would say to other parents who don’t have the resources we have — the main thing is to look beyond what’s available. Get together with other parents. Pool resources. So, yes, I know that not many people can go to Italy and start a family business for the well-being of their adult son. But the point is — you have to work with neurodivergent people as individuals, and apply creative thinking, and see their interests as something positive rather than something that sets them apart as unusual or “different.” —Katharine. Her son, Toby, was diagnosed at age 3-and-a-half with profound autism and learning disabilities.

The Subway Helps Me Feel Calm

Thinking about subways is a good way to calm myself down when I feel restless or anxious. When I am riding in a subway car, I feel like I’m in a rocketship, but it’s going straight instead of up, and that makes me feel calm. I actually don’t know how to describe that sensation to you — it’s just a weird feeling. All I can think to say is that it makes me feel calm.

I think my interest in subways is similar to my interest in maps. I look up New York on Google Maps a lot. You have a lot of numbered streets. They go up past 250. You’re pretty big, even bigger than London. I’ve only been on one subway system (the one in Toronto). But I’d really like to go to the one in New York.

Nowadays, I look at the Toronto subway map constantly, but just for fun. I figured out all the routes in early 2012. I can tell you whatever you want to know, including all the busiest stations in the system. That’s how much I know. The busiest subway station is Glory-Yonge, where the yellow and green lines connect. Glory-Yonge gets about 500,000 visitors each year.

I’ve also been a gamer since I was 7. Minecraft is my favorite. It’s endless. The graphics are completely blocky — I’d never seen that. It makes me feel relaxed. The game doesn’t really have much of an ending or anything. You build worlds. It puts you in a very creative mode. Cassidy, 13. Cassidy was diagnosed with autism at age 6.

Space and Star Trek Helped Me Find My Community

I was a major Star Trek fan when I was in high school, and I sort of back-ended my way into an interest in space after a visit to the Neil Armstrong museum with my grandmother. I feel like I have everything but employment at NASA, because I have so many books about the space program. I even have an autographed copy of Mercury astronaut Wally Schirra’s autobiography!

Leaving Earth? Yeah, I’ve thought about it. I don’t think I’ve encountered a serious supporter of space exploration who didn’t wish he or she could go into space themselves. I applied for the Mars One one-way trip to Mars, and I actually made it to the end of the second round of selections before being eliminated.

My interests have helped me cope with life. When I was in high school, I knew that Star Trek was going to be on at 9 that night, even when I’d had a rough day. It’s a way that I can escape the world for a little while. It really does help me feel happy.

One thing that I think people who don’t have Asperger’s don’t get is that we don’t like to be forced to be creative under the guise of “having fun.” And things that are fun for other people usually aren’t fun for people with Asperger’s.

I know sometimes it looks like I’m isolating myself. But it’s hard to sustain a conversation when you can’t identify with the other person, so I tend to stay quiet around people who don’t have much of an interest in space. I’ve formed friendships with people who could talk about the ins and outs of space exploration and colonization because these are things that interest me. That’s my community, and anytime I’ve wanted to socialize, I know I can talk to them. —Heidi, 35. Heidi was diagnosed with autism at age 4.

A Nuanced Way to Think About Autism and Niche Interests