Interview with IACC Member Dr. Kevin Pelphrey
So I'm Kevin Pelphrey and I'm a neuroscientist. I study autism in the developing brain and I use a variety of imaging techniques to do that. And I'm a member of the Interagency Autism Coordinating Committee, and a father of five kids, including a daughter with autism.
Connection to Autism
I started out studying basic cognitive neuroscience focused on social brain development, and while that was relevant to autism, I wasn't an autism researcher per se. And then with my daughter's diagnosis, which took quite a while to kind of happen because she was a girl with autism, I retooled what I was studying and focused entirely on autism.
The most surprising thing is that we could have a group of boys and a group of girls with autism and behaviorally, you know they have the same level of symptoms, they both have - both groups have the same diagnoses, the same range within the diagnosis, same intellectual range in terms of their intellectual functioning and their adaptive ability, but then the underlying brain systems that are the correlates of that diagnosis is different for girls versus boys, and I would have predicted some differences but not the magnitude of how different this seems to be in particular the girls seeming to have kind of a preserved social understanding system, whereas the boys - that kind of classic signature of difference in social brain functioning being disrupted, but it seems to be intact for the girls even though behaviorally they're showing as qualitative differences in social function.
Biology of ASD in Girls
I've alluded to the notion that we're worried that we're missing a group of girls - that they're not showing the classic signs of autism, but they're having difficulties in the world, and some of them end up with an autism diagnosis and some with an ADHD diagnosis. There's no way to know what is the real ground truth, it's all relative. So, the hope is that the type of work that we're doing with brain imaging, with genetics, putting those together, that we'll eventually be able to inform diagnosis and early identification or identification period, from a brain perspective, so that the set of diagnostic criteria becomes not just a list of behaviors and a clinical understanding of those, but is also informed by - this is what you will see in the brain and this is what it predicts behaviorally.
First Experience with IACC
My experience as an ICC member - it's been a fantastic experience. It sort of started with being invited to give a talk at the IACC and that was a wonderful opportunity. It was exciting and sort of the first few meetings were really a shock about how many different perspectives we're being represented and watching the Director of NIMH and staff, able to very adeptly listen to a multitude of perspectives and that sort of cooperative spirit and willingness for people to, on the one hand argue but argue very respectfully and kind of share views.
For me as a parent, the sense that there's a federal committee that's interested in you know exactly the thing that has been, you know, most concerned to my family, and the level of people involved, you know the the expertise represented in the room, the resources being contributed to the research, the fact that, you know, public members of the public can come in and give testimony and - or comments, and say this is the issues facing us, and that is extraordinary.
Who the IACC Represents
One really critical mission that it serves is to bring a voice to the autism communities. So what I quickly learned on the committee is that there's really multiple communities being represented. And so, individuals with autism, parents, scientists, policymakers, clinicians, and of course those aren't fine dividing lines, you know, one individual can be multiple of those things, but the fact that there are multiple communities, and that they could see things in very different ways, you know starkly different ways, and have different agendas, different hopes, different expectations, and sometimes they're, you know, completely in opposition, and so being able to have a committee that's focused on the broad goal of improving lives of individuals in autism and their families, and doing that in the most efficient, productive way possible, but then being open to those different communities. That, just the existence of that, is beneficial in the sense that it provides the forum to have very complex discussions, then to you know go back to our respective roles in life and do our work, and think about what we've heard, and come back again and see, hopefully, progress and hopefully resolve and bring together a lot of the contingencies, and stakeholders who might be an opposition, and kind of forge a path forward.