I had a neat opportunity here at IMFAR. Last night, as I was standing on the long escalator that traverses 3 floors from the IMFAR convention area to the lobby below, I glanced backwards to peek at the person behind me who was having a pretty animated conversation on a cell phone. His name tag read, “Roy Grinker”.
He noticed the glance (which was probably more like a bit of a stare, not too inconspicuous I suppose), and politely paused his conversation long enough for me to interrupt, introduce myself, and invite him to coffee this morning. He accepted.
Most LBRB readers will know Dr. Grinker as the author of “Unstrange Minds” and as a professor of anthropology and human sciences at The George Washington University. He continues to conduct autism research, and he has a role (that we’ll learn a little more about in a minute) at IMFAR too.
He arrives to coffee right on time, and is every bit as friendly as he appears in the pictures that often accompany articles about him online. He sits down to chat with me, and LBRB readers, so…
Meet Roy Richard Grinker, PhD
LBRB: Is it correct to say that your interest in autism research is with epidemiology?
RRG: Yes, my focus has been on epidemiology, but also on doing qualitative research on how culture influences the prevalence and recognition and management of developmental disabilities.
LBRB: Tell us a little more about what you mean by how culture influences those things. Is that willingness to diagnose, etc.?
RRG: Well, we don’t know very much, right now, about autism in other places in the world. It’s, at this point, an assumption that the onset, the core symptoms, and the course is universal. We don’t know, because we don’t have data from other cultures. For example, let alone phenotypes, we don’t have prevalence data for any country in the entire continent of Africa, any country in South America, any country in Asia other than Japan (that includes south Asia), and basically, in the international realm of autism research, it’s wide open.
LBRB: So what specifically brings you to IMFAR?
RGG: I came to the meeting this time primarily to meet and talk with people from other countries, where we don’t know much autism. And we have people here from all over the world. The reason that I’m wearing this button…
[He's wearing a button with the IMFAR name and logo that reads, "DIVERSITY AMBASSADOR"]
…is to be part of IMFAR diversity.
LBRB: International reach?
RRG: International reach. It’s not so much like the American “diversity”, it is international diversity. We reach out to all the different countries, and as an example, there’s one autism researcher here from Nigeria. With this, he knows that I’m interested in meeting him. He can feel comfortable to just walk up and talk to me, or have coffee. There are a lot of people here from other countries who may not know anyone here.
LBRB: So you’re here for that purpose?
RRG: Yes, and to talk with other people at the meeting.
LBRB: Let’s switch gears a little. What about “American diversity”? What’s your take on the science about that, at a meeting like this?
RRG: In terms of diversity, I’m really inspired, inspired because, when a diversity committee meeting was held, there were about sixty people there. Most them are actually in the U.S., working in the U.S., and are interested in the barriers to care, and the obstacles to services within minority communities.
LBRB: That sounds like it could be interesting in and of itself.
RRG: We know that the age of diagnosis for minorities in the United States is significantly higher than the average age of diagnosis for non-minorities, and that means that they’re getting services later.
LBRB: What does the research science say about this?
RRG: Research supports the premise, one, that outcomes are better if interventions are earlier, and two, epidemiologic data supports the findings that African-American and Latino children are diagnosed later, and receive fewer services. There are data (but not published data) that I’m aware of, that show that even Latino children who are insured, don’t always get services as frequently as others. It could be that they were referred, but don’t take advantage of them, or perhaps there are other structural barricades; like they have insurance, but they also have three jobs, or they live far away from the services. We really don’t understand what all the barriers to uptake of care are, in minority populations. One of the projects I’m working on now is an NIMH-funded project to look at early identification of autism in two communities where there are virtually no autism services delivered.
[Dr. Grinker did provide a little more detail about one research project in southwest Florida, among migrant worker families, as well as a project in South Africa, from where he'd recently returned].
LBRB: So these are your real research interests?
RRG: There are three strands to my research. One strand is this work I’m doing in southwest Florida and South Africa. The second strand is the continued work on the prevalence of autism in South Korea, and we hope to report the results soon there, it’s been a long study – nearly thirty thousand children (the denominator in the sample). The third strand is my book writing – I love to write books.
LBRB: Tell us more about “Unstrange Minds”.
RRG: It just came out this week in Portuguese (so it’s available in Portugal and Brazil), and it really means a lot to me to be able to provide a message that people find uplifting. The thing is, that sometimes when people talk about my book, they focus on the argument about epidemic. And I think that’s important, and I spent a lot of time in my book going through the various reasons why autism diagnoses have increased. But, for me the most important part of the book is that it doesn’t present having a child with autism (or relative with autism) as a tragedy, or something that’s horrible and devastating. Rather, it’s a life experience which is distinctive, and can be incredibly rewarding. I take that positive perspective. I’m invited to give talks, occasionally. Sometimes I’ll give a talk somewhere, and I’ll ask why they invited me. Frequently the answer is, “because you’re not angry”. There are plenty of people out there who give public presentations that have to do with their anger – the anger that the community is not answering their questions, the anger that the services aren’t there, anger that their theory of causation isn’t taken seriously. I guess some people just want to hear somebody who’s got a more positive perspective, without being a Pollyanna, and I think that’s what I offered in the book. To me, that’s the most rewarding thing.
LBRB: Can you give a personal scoop to Left Brain/Right Brain Readers? What do you like to do in your free time? Do you have any hobbies?
RRG: I have two hobbies. Jazz piano - and I’ve played jazz piano since I was very young. I played throughout college and graduate school. I played alumni parties, that sort of stuff. And I actually still work with a really talented guy in Washington, I’m still, you know, “taking lessons”. I started when I was four, I didn’t start jazz at four, but I probably started jazz when I was about 9 or 10. My parents’ apartment building was down the street from a jazz club.
[Grinker went on to explain that he was able to spend a little time at that jazz club (back in that day), and although I didn't take down all of the names, he quickly rattled through a list of jazz greats (such as Dizzy Gillespie) he was able to meet in his youth].
What about hobby number two? He just finished (and finished well in) the Boston Marathon.
(Disclosure: my attendance at IMFAR was funded in part, by a travel grant from the Autism Science Foundation.)