So I set out blog about the first full day at IMAR, and quickly realized I’d bitten off way more than I can chew. I had tons of scribbled notes after attending most of the epidemiology track this morning, perusing the research posters, and listening to some presentations on specific “treatments”, which were essentially, although very different from one another, targeted educational strategies in many cases. There’s just so much at IMFAR, it’s really impossible to provide any great detail about any one thing. The presentations move very quickly, at about 12 minutes each, with 2-3 questions at the end, and it seems like there’s really only time to hear about the “what” the research is about.
If this were to be successfully blogged with any depth beyond what’s contained in the abstracts (which anyone can view online), it would probably require about 8-10 people, holding more in-depth discusssions with several research teams, just to provide spotty coverage. If you’ve ever heard the complaint that there just isn’t enough autism research taking place, IMFAR is a pretty good example of the fact that such complaint may not be based in reality. So what to do about this?
Since I have the opportunity to be here, and see and hear what’s taking place, what can I provide to readers that can’t be here? Sure, there is a little additional detail provided by the presenting researchers (their abstract presentations often contain slides that are helpful in barely understanding the abstract’s material details), but the truth is, what’s seen and heard here is actually quite similar to exactly what’s in the abstracts. So where to, from here?
I don’t expect everyone to agree, but I think it might be of at least a little value, to simply meet some of the people who are here. And there are some fascinating people here. Perhaps some would find it informative if I (we) have an opportunity to hear from someone who is heavily interleaved with the inside scene of the science of IMFAR? We don’t have to talk all science. Perhaps we could find out more about them. You know? Get to know ’em a little more than we did before.
So, here we go. Meet David Mandell, ScD.
(Incidentally, Sullivan has written about some research that has his name on it here at LBRB).
Dr. Mandell is a researcher himself, and the Associate Director of the Center for Autism Research, at The Children’s Hospital of Philadelphia. He’s also this year’s Scientific Program Chair for IMFAR. Although he has the help and participation of several collaborative teams in varying disciplines in the field of autism research, it’s essentially his responsibility to put together the scientific program that really makes IMFAR what it is this year.
My first-impression, and lay opinion, is that he seems way too young to be as accomplished as he appears to be. Looks can be deceiving though. He’s friendly, yet scientifically earnest. He sits down with me for half an hour, simply to share some of his take on, and enthusiasm for the autism research and IMFAR. I won’t agree with everything he says, but his points are thoughtful, and clearly communicated. Let’s meet Dr. Mandell, and learn a little more about his take on IMFAR along the way, shall we? So that you, dear readers, can share a little in this IMFAR experience with me, and get something that you couldn’t otherwise get from the book of abstracts, let’s chat with David Mandell ScD.
Exceprts of an interview with David Mandell ScD
LBRB: How did you become involved in IMFAR? How did you go from being a researcher to chairing such a large scientific thing like this?
DM: My first IMFAR was in 2001. It was maybe the first or second one, yeah the second, and I was a post-doc. My training was as a psychiatric epidemiologist. I had originally come to the University of Pennsylvania to work on a CDC study to do surveillance – to look at the number of kids with autism, and it was actually at IMAR that one of the keynote speakers set my research agenda for the rest of my life.
LBRB: Who was that?
DM: It was Peter Mundy, who’s now at the Mind Institute (at the University Of Miami before that). There was a lot of talk about screening instruments, and the MCHAT was of great interest to people, and: How early can we recognize these kids? How can we find the ones that we’re missing? And, you know, we are getting better and better at identifying these kids with autism, and the communities in which we’re identifying them, are completely unprepared to meet their needs. And what are we going to do about that?
LBRB: Speaking of identification and missing kids, you’ve done some research with ethnic disparity. Are those missing groups what got your interest in epidemiology? Or, was there other stuff?
DM: I sort of came at it backwards, and I came to autism sort of late. I knew from about the time I was twelve that I wanted to be a child psychologist. I thought that’s what I wanted to do. I had always worked at camps. I worked with underpriveleged kids. I knew I wanted to work with kids, and I was particularly interested in working with kids with emotional and behvioral problems. I spent most of my college years, and after college, working in psychiatric hospital, working with Guatemalan refugee children (preparing them for entry into the public school system), and I worked with adolescents who had psychiatric disorders, and who’d abused substances. And it was at one of my jobs, sort of later in that path, that I was working for a place called the Chidren of Alcoholics Foundation, and I worked developing curricula for professionals who were working with children from addicted families. So, we were developing these programs, we were training teachers in recognizing when there may be problems at home and what to do about it, helping pediatricians address very sensitive topics during the very brief pediatric visit and what to do when they uncover problems. And so we developed these programs, we’d get them published, and I’d go out and I’d do all these trainings, and we’d ask for evaluations, and the evaluations would always come back with, “yes everybody loved the training”. We had no idea if what we were doing was making any difference in any kid’s life. There was no follow-up. There was no evaluation – and I became very interested in evaluation.
LBRB: So, actually measuring results?
DM: Measuring change. How do we know what we’re doing works? Some of the members of our scientific advisory board at the Children of Alcoholics Foundation, who I worked very closely with in developing the curricula, suggested that I go back to graduate school, and they suggested a masters in public health – with a focus on program evaluation (which was my interest).
LBRB: And you said, “sure, why not”?
DM: I applied to schools, and I thought, “that’s great”. All of my essays were about how I was going to take the skills that I learned in the program and bring them back to the front line work that I had been doing. And as it turned out, I couldn’t afford the masters program. It was very expensive and there were no scholarships, but if I switched my application to the doctoral program, and I got in, they would cover my tuition give me a stipend.
LBRB: That seems worthwhile.
DM: Yes. So I ended up in the doctoral program instead of the masters program.
LBRB: So where does your research interest take you today?
DM: So my interests are not very distant from where they were when I started.
DM: Well, no. Epidemiology is a set of tools. Epidemiology is literally the study of the health and illness, and its distribution in a population. You can do that with any health condition. But, it also teaches a systematic set of tools for evalutating – the association of different variables. Sometimes we think about those variables as risk factors. So there’s a lot of discussion at IMFAR this year about… there’s several studies on, prematurity, and fertility problems, and fertility treatment, and its association with autism. So those are large scale epdiemiological studies. They’re looking at different variables in the population. But you can also use those same tools to look at positive outcomes associated with treatment. So I take that skillset, those tools that you learn in epidemiology and apply them to looking at treatment and other supports that children with autism and their families get, and what the associated outcomes are.
LBRB: You mentioned in yesterday’s press conference that a theme in this year’s research was treatment research beginning to make a real difference. Where do you see that “real difference” translating into everyday life for families or schools?
DM: So let me give you one example. One of the huge challenges we have in the U.S. is that we can’t get insurance companies to pay for treatment for children with autism. The reason the insurance companies give is that treatments don’t have the level of evidence to support them that those insurance companies often require. And the highest level of evidence for them, is a randomized trial. One of the really exciting things about the treatment studies that are being presented here, is a dramatic increase in the number that use randomization as part of their model. And so these are treatment studies, that when published, then become the standard of care. They can be used as a level of evidence to support changes to the decision rules that insurance companies have. And I’m already getting calls from insurance companies about, “How do we think about restructuring and financing, so that we can support these kinds of interventions?” That’s one, I think probably the most obvious real world example.
LBRB: Tell me more about your role with IMFAR? How did you get so involved?
DM: Well, I’m the local boy. So a lot of it is, you know, I’m from Philadelphia, from the University of Pennsylvania…meeting chair and program director..
LBRB: So you were elected this year?
DM: Yeah, that’s right.
Bob Schultz is the director of the Center For Autism Research, and is the immediate past president of IMFAR, and he had just come from Yale to the Children’s Hospital of Philadelphia, and he’d asked me to be the associate director of the center. He also asked me if I would chair the meeting.
LBRB: It’s a one year appointment?
DM: Yes. I think he saw it as something that would be beneficial to me. But it’s exhausting.
LBRB: I’ll bet. The program is huge.
DM: I read nine hundred and eighty-seven abstracts.
LBRB: You read every abstract?
DM: I read every abstract. You manange the program committee. You manange the reviewers. The people on the program committee are brilliant, and very dedicated to the field. So a huge part of it is via learning from them what’s important in their particular discipline. And the second thing is by reading all the abstracts, you really begin to see the themes that are emerging in the science.
What’s really exciting to me about this IMFAR is that the really exiciting science is happening in between the traditional disciplinary boundaries. So we used to think about there are the genetics ones, and there are the animal models ones, right, and there’s a biological mechanisms in humans one, and there was pharmacological treatment, and there’s behavioral treatment. And then, sort of here over on the side, there’s epidemiology and services research, and policy type stuff. These were very separate tracks, with very little crossover. And now I think the message, or at least one of the messages at IMFAR is that these disciplines have to talk to each other. It’s by collaborating, and it’s by training new investigators who have expertise in at least two of those disciplines where we’re going to see the most exciting science.
LBRB: So this is a huge program. What are you going back to? What’s next for you after IMFAR?
DM: So I have two things. My particular interest is how you take evidence-based interventions and implement them in communities so that they are effective and they sustain. My group is presenting tomorrow on our study, the autism structural methods study. We partnered with the school disctrict of Philadelphia, we trained teachers in 50 classrooms in evidence-based interventions and in looking at outcomes for kids. So part of my research agenda is expanding that, expanding it up and down the age span, and also thinking about what the next steps are.
LBRB: That sounds heavily educational. Do you consider that autism “treatment”?
DM: I call it what the funder needs it to be called. So this sort of gets to the other half of my research. The other half is actually going much more biological. Which is, we have kids who are phenomenal responders to the behavioral intervention, and then we have kids who aren’t. Why? What is changing in their brains as a result of the intervention; because any behavior you observe has a correlate in brain function. If we can find those correlates, like Eric Courchesne was presenting, it is going to help us understand how to better target our behavioral strategies, and it’s going to give us earlier markers… So I want to connect the behavioral interventions to the biology. Because I think ultimately what we’re going to see, is that we will find systems in the brains of children with autism that are not functioning that way we would hope they might, and that we might have biological interventions (like medication). A medication may help correct that system, but that child still has to learn. And so I think the most exciting interventions are going to come from pairing mecdications with the different strategies for learning. So that’s the other direction my research is going.
LBRB: Does any of this leave you any free time? What do you like to do on a Saturday? Do you take time off from research?
DM: I take my kids to dance class on Saturdays. And, I fence.
LBRB: That’s not something you hear too often…
DM: That’s my evening activity.
LBRB: I don’t know anything about fencing, is that good exercise?
DM: Yeah, it is good exercise. But the thing about academics in general is that you never turn it off. I definitely keep a notebook by my bed. You wake up in the middle of the night with an idea, and it gets written down. You never really turn it off, but like with any job, you have to make time for yourself and your family. I think people do that with varying degrees of success.
LBRB: Are you pretty good with that?
Pretty good. I have a six year-old and a four and a half year-old. They go to bed at seven.
LBRB: Wow! That’s early. You’ll have to share your secret with me for that?
DM: My secret is my wife.
Dr. Mandell had much more to share about what he considers success in autism research, and explained personal reward from succcess and small change at local Philadelphia schools. I’d really have loved to share more, but learned a valuable lesson during writing this post – I really suck at transcription. I hope you enjoyed hearing from Dr. Mandell though. I know enjoyed hearing his take on the IMFAR science in person, and I thank him for making a little time for LBRB.
(Disclosure: my attendance at IMFAR was funded in part, by a travel grant from the Autism Science Foundation.)