YH: What research has your lab been doing most recently?
JM: Most of the work that we do is to try to understand the way people with autism process social information. I also study how people with autism perceive other people’s faces and how they perceive information that connotes human movement. We try to understand what makes social interactions rewarding, how fast we process faces compared to other kinds of things, and how this unfolds in childhood. We’re looking at children at risk for autism and whether we can detect autism when
YH: Do you also work with patients in a clinical setting?
JM: The kinds of clinical services we provide are mostly evaluation, for families who wonder if their child has autism, or many times it’s families who already know that their child has autism but want to get advice. It’s a multi-disciplinary approach, with a psychologist, a psychiatrist, a speech and language pathologist, sometimes a social worker. We’ll see the children and parents on two consecutive mornings, and on the second day, we all put our heads together and discuss our impressions with the parents.
YH: You do research, you teach, and you’re involved with patient care. Which of those is the most fulfilling for you?
JM: All of the above. I enjoy each, but I also think that each informs the other. As a clinician spending lots and lots of hours with children with autism, I have insight into what seems to give them most trouble, and what things are intact and preserved in kids on the spectrum. I can use that information as a neuroscientist to design experiments to understand how the brain works, what is going wrong in autistic development, and how it works so well in typical development.
I really love taking students into the lab; you get such great ideas, because the more that you know, the more time you spend doing something, the more you presume that you know stuff. But when you take people who are fresh, they don’t presume to know anything, so they have all these exciting ideas. Some of the most exciting work we’re doing in the lab originates from ideas produced by students.
YH: Can you comment on the new finding that mutations on a specific gene are correlated with autism risk? What does this mean for the direction of autism research?
JM: It’s a big clue. Autism started out in a wacky place. In the ’50s people thought that autism was caused by poor parenting. And the ’70s these studies revealed it to be a genetic disorder. But there’s no single autism gene. This is the first time that in three separate samples across three different studies they had the same kind of finding. This can help to explain a subset of people with autism. But the best diagnostic test for autism is still to bring a child into our clinic and for me to play with him for an hour, and then to have a conversation with the parent: and that’s not like most medical tests, right?
YH: There is currently a proposal to change the diagnostic definition of autism for the fifth edition of the Diagnostic Statistical Manual of Mental Disorders (DSM-V). What was the impetus for this proposal?
JM: To be clear, I’m not really involved with the task force, though obviously I’m an interested and invested party. The goals of the task force were to make a more specific diagnosis, while preserving sensitivity, and to improve reliability from place to place. Presently in the DSM-IV, autism is part of a class of disorders called Pervasive Developmental Disorders, and there are three that are referred to as autism spectrum disorders: Autistic Disorder, Asperger’s Syndrome, and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS). Some studies suggest that clinicians do not always make the same distinctions among these. So part of the goal of the task force was to eliminate sources of unreliability in diagnostic criteria.
YH: And is the result that the spectrum is tighter? That you’re excluding children who would otherwise have had a diagnosis?
JM: Well, it’s unclear. The changes are doing away with the diagnostic subcategories so that it will just be Autism Spectrum Disorder. But they’re also actually changing the symptoms required for diagnosis. It appears that you will now need to have a more consistent profile of social and communicative difficulties, and you need to always have repetitive and restrictive behaviors, whereas currently that’s not required. In a study that was published last month we took a look at a data set that was collected in the early ’90s and we saw that a lot of people who met the old criteria didn’t meet the new criteria. And this was especially true for people with Asperger’s Syndrome and PDD-NOS, and especially people who were more intellectually able. It’s certainly thought-provoking, but we’ll have a much better sense when we actually have studies that compare diagnoses with DSM-IV and DSM-V in kids coming through clinics today.
YH: What are the negative consequences for kids who don’t get a diagnosis? In terms of access to treatment?
JM: That’s the concern. If they no longer met diagnosis, it’s not exactly clear what would happen to them. There are new diagnoses actually being added. There’s a diagnosis called Social Communication Disorder, which is a lot like PDD-NOS but with no repetitive and restrictive behaviors, and undoubtedly there are lots of people who would fall into that category, but again we don’t know exactly what that would mean.
YH: It seems like these days, eccentricity or social ineptitude is very often chalked up as being a form of autism. How often are these assessments right?
JM: I don’t think that eccentricity is regularly being diagnosed as autism. It costs money to get an autism diagnosis. It takes time. And for most people, it’s a stigma. Parents think carefully before they bring their child to an autism clinic. In my experience as a clinician, the families that we see are there because these are children who are experiencing difficulty, and need help.
YH: Do you have personal experience with autism?
JM: No one in my family has had autism, but working with many, many families and working with people on the spectrum is really motivating to me. You meet really very amazing individuals and families; the degree of selflessness and generosity and perseverance is incredible. As a parent with typically developing three- and five-year-olds, I find waking up in the middle of the night enough to get me frustrated. Seeing how hard these parents work is inspiring.
YH: What is the public’s most serious misconception about autism?
JM: I think one misconception is that people with autism don’t have relationships with other people. And that’s not true. Their relationships are different than people with autism. If you take even the most socially impaired young children that we see, they still have relationships with their parents. I think that’s one thing that people misunderstand, thinking that to people on the spectrum other people are disinteresting. Most of the time it’s more that other people are incomprehensible.
YH: Where do you see your work moving in the next five years?
JM: I hope that in five years we will do evaluations using more biologically-based methods. I think to an extent it’s unrealistic, but I hope that we’re assesing in more objective ways, and not just saying, based on a conversation with a parent or a play session with this child, that a child is going to benefit from this kind of treatment. I hope that we will use something about the child’s brain to choose the best type of treatment and that we understand what those treatments are actually changing in the brain.
—This interview was condensed by the author