Autism researcher Dr. Christopher McDougle made his film debut last week in a documentary called “Sounding the Alarm,” which premiered at Massachusetts General Hospital ahead of other screenings nationwide and an online release. The film takes an in-depth look at 12 families and focuses on problems people with autism face, including the transition into adulthood. McDougle, a professor of psychiatry at Harvard Medical School and director of Mass General’s Lurie Center for Autism, started his career when autism was a very rare diagnosis. Now, at least 1 in 88 American schoolchildren fits the diagnosis.
Q. What do you hope the film accomplishes?
A. I hope it raises awareness about autism in adults with the disorder. Society is much more familiar with autism in children than they were 20-25 years ago, but many of them have no idea what happens to children with autism when they grow up.
Q. What does happen?
A. Individuals with autism live as long as the rest of us. The opportunities for many with more severe autism end at the age of 22 when they leave high school. [Advocates have] tremendous concerns about the lack of vocational opportunities, social opportunities, educational opportunities, places where they might live.
Q. The unemployment rates for adults with autism are extremely high — higher than many other conditions.
A. Thirty percent of adults with autism are minimally to non-verbal, and they don’t know how to read social cues. If you factor in people with autism who have irritability or behavioral problems that aren’t well controlled — trying to put these people in placements is difficult. They’re not going to be well received in jobs that deal with the public.
Q. There are adults on the autism spectrum who argue that they are just different — not disabled — and who object to efforts to eradicate autism by groups, like Autism Speaks, whose founders Bob and
Suzanne Wright helped fund
the new film.
A. Naturally if you’re someone with very high functioning autism, you don’t want to hear things about being eradicated as a person. Lumping everyone under the same umbrella leads to this confusion.
Q. Do you think the current label “autism spectrum disorder” will stand the test of time?
A. Terms like autism spectrum disorder will go away as we develop more specific causes and treatment. This broad spectrum thing gives us a sense that we understand this problem, when in fact we know so very little.
Q. Will research into autism eventually help us break down the spectrum?
A. I truly believe that before too long — let’s say within five years, we will have made significant progress toward identifying more meaningful subtypes of autism.
Q. Could that eventually lead to a treatment or cure?
A. I don’t see anything close to being able to reverse the symptoms of autism. The idea of being able to identify a subtype earlier so you can intervene earlier and alter the trajectory, I think is a possibility. I’d be optimistic.
Q. One of those subgroups you expect will be people with brain inflammation?
A. Not only in the brain but more systemically throughout the body that might contribute to seizures or severe gastrointestinal problems. You could imagine that if you treated them with an anti-inflammatory medication it might dampen some of the active inflammation. I don’t think this would be a cure, but maybe they’re more interested in social interactions, their eye contact is better, they’re less aggressive.
Q. What do you see as the biggest problem for people with autism as they age out of the public school system?
A. Everything we do for that person is almost like reinventing the wheel every time, because there aren’t services [we can refer them to]. Over time, there’s going to be enough volume that the world will respond, but in the meantime, there’s going to be a lot of tension and discussion and inaccurate information.
Q. How should the general public, someone who’s not directly touched by autism, respond to this increase in adults who need help?
A. These folks are in our communities and our children are going to school with them. Learning to understand people with social disability will reduce fear and anxiety, so that these people can be integrated into society and reach their potential.
Q. What about parents of adults on the spectrum?
A. Their number one goal is they want [their child] to be happy. I think that’s very attainable for most people with autism and it’ll be even more likely when society realizes that we need to step up and provide some of these fundamental core opportunities that the rest of us take for granted. And I think we will.This interview has been
edited and condensed.
Karen Weintraub can be reached at Karen@KarenWeintraub.com or on Twitter @kweintraub.