Journalist Jennifer Latson’s new book The Boy Who Loved Too Much: A True Story Of Pathological Friendliness tells the story of a young man with Williams syndrome, a genetic disorder that is sometimes called the opposite of autism: People who have it tend to be extremely outgoing and irrepressibly friendly. Temple Grandin, an advocate for people with autism and the author of The Autistic Brain and Thinking in Pictures, spoke with Jennifer about the book — and how autism and Williams are more alike than they first appear.
Temple Grandin: How did you come about writing this book?
Jennifer Latson: I first heard about Williams syndrome in a news story on NPR, where they were mostly talking about it in terms of the social aspect. It sounded so amazing that I wondered, “Why is this even a disorder? It sounds like it’s just some charming and engaging people.” Obviously, as I learned more about it, I learned how disabling it is and that it’s not just about being charming and engaging. There are all these other symptoms, too.
TG: Right, they are social, but they also have intellectual impairments and health issues. But that’s the reason that motivated you to write the book?
JL: Yes. As an introvert, I wanted to learn from them, to study their social ease, because I kind of wanted to emulate them. But I also thought: "How hard must it be to be that open to the world?" You know, to trust everyone, to really have this kind of unconditional love for everyone. To me that seems terrifying. They’re so vulnerable.
TG: And truly vulnerable people get taken advantage of. That’s true for autism, too.
JL: Exactly. So that’s why I wanted to write about a young person with Williams, right on the cusp of adolescence, to see: How can you grow up; how can you ever be independent with this syndrome? Can you ever learn to overcome that sense of "Everyone is good and worthy of my trust all the time"?
TG: Well, you just have to learn that they’re not, and try to avoid situations where people could do something bad to them.
JL: True, but that’s hard to learn when you’re wired to believe that everyone means well. Even if they just pretend to. People with Williams don’t always have the ability to tell who’s sincere and who’s not. Even sarcasm can be very hard for them to pick up.
TG: There’s a lot of things like that with autism. Certain jokes I didn’t understand that well. Or sayings like, “Strike when the iron is hot,” where you really mean “take the opportunity when it presents itself.” I mean, I have had to learn what those things mean. And now I find myself using a lot of those expressions, like “the horse is hot to trot.” But when I say “the horse is hot to trot,” I see a horse in the starting gate, raring to go.
JL: So you picture it literally.
TG: Oh yeah. I do, definitely. Now, people with Williams syndrome tend to be very musical.
JL: Yes, very much so. Both in the sense of appreciating music and in making it. Some of them are really musically gifted, although some are not.
TG: All of these things have a lot of variation. The thing that’s interesting to me about autism and Williams syndrome is that you see a brain can be more social/emotional or a brain can be more thinking or cognitive. At what point is something just part of normal variation? Now, I know Williams syndrome has a specific genetic abnormality, but I think on the autism side of things there’s a part where, in milder forms, it’s just normal variation.
I recently found a paper on solitary versus more social animals, like large cats, for example. Lions are more social than panthers or tigers. And that’s just normal variation. And there could be some genetic overlap with autism. I’ve done a lot of thinking about that.
JL: Do you think eventually researchers are going to find a genetic cause for autism, or do you think it’s different for everyone?
TG: I think autism is going to be more of a continuous trait, where there are lots of little genetic variations and then the more they dig into it, they’re going to find that they’re just normal variations. But it’s not going to be simple. They might find out that autism is a lot of different things. Right now we’ve got a very variable, heterogeneous bunch of people with the same label on them. It’s not precise. A Williams diagnosis is much more precise.
JL: As far as the overlap between Williams and autism, how much do you think they are actual opposites?
TG: Socially there’s a lot of opposites. But for things like impulse control, both conditions can have that.
JL: Sure, and I think for Eli, the boy I wrote about, one of the biggest challenges was that even though he’s outgoing, he’s friendly, and he loves people, he had a hard time connecting with other people. So making a friend was actually really hard for him, despite the fact that he really put himself out there.
TG: Well, I got friends who shared interests. We’d ride horses together. We’d do electronics together. So it’s important to give these kid things like scouting, art, theatre, music, band — people with Williams are really into music, well, there’s all kinds of musical stuff that you can do with other people. That’s where they’re probably going to be most likely to have friends.