Mother of son with Asperger's upset about misinformation spread recently
Writer implores journalists to be responsible when reporting on the syndrome
"Your shoddy work impacts our children's lives," she says
I’ve just listened to NRA Executive Vice President Wayne LaPierre suggest we need guns in our schools because “our society is populated by an unknown number of genuine monsters.”
After his further suggestion that the United States create a nationwide database for the mentally ill, I got angry. Leaving aside the issue of medical privacy laws, I found it ironic that an organization so vehemently opposed to gun registration would propose such a measure.
As a parent, it’s been heartbreaking to watch television coverage of the shooting of 20 innocent children, six teachers and the gunman’s mother in Newtown, Connecticut. But as the parent of a wonderful young man with Asperger’s syndrome, coping as pundits and journalists link this diagnosis to the crime in an attempt to find meaning has added another layer of anger and grief to an already stressful situation.
LaPierre’s remarks were the latest salvo in a campaign of misinformation and fear mongering about mental illness, sparked by news reports that shooter Adam Lanza had been diagnosed with Asperger’s, a type of autism.
In 2006, my son Josh, then 12, and I visited the StoryCorps booth in New York, where members of the public are encouraged to tell their stories for the program that airs on National Public Radio. It was a difficult time for both of us. Josh was an honors student, but he found the increasing use of nonverbal social cues confusing.
Kids weren’t as tolerant of differences as they were in elementary school, and he was bullied. My divorce from Josh’s dad was dragging on. Josh and I talked regularly, but there is something magical about being face-to-face in the quiet of the StoryCorps booth.
Six years later, I still get e-mails from people thanking us for sharing that moment of parent/child intimacy.
Last Saturday I sat down with Josh, now 19, who was already anxious about his upcoming finals week at college, for another lengthy conversation. We discussed what he might see on TV or online and the thoughtless yet hurtful comments he might encounter in his real life from people who have learned what little they know about Asperger’s from misleading media coverage in the wake of Newtown.
I wanted to ensure that he understood whatever drove that deeply troubled young man to do what he did, it wasn’t because he may or may not have had a diagnosis of Asperger’s. I want Josh to understand that no matter what anyone says, he is not a “monster.”
Josh finds the spotlight uncomfortable, but he gave me permission to write this piece because we both feel it so important that everyone, including Wayne LaPierre, the NRA and each and every journalist who has access to a nationwide audience, knows this too. As a journalist myself, I implore my colleagues to be more responsible, to consider the impact they have with their words in the dangerous rush to be the first to find “answers.”
When my son was diagnosed at age 5, I had many feelings of my own to sort out, a process made infinitely more difficult by others rushing to judgment. Like that 30-minute, long-distance haranguing from a member of my ex-husband’s family asking me why I was “damaging” my child by “labeling” him. Imagine how much more reluctant families will be to accept a diagnosis now if there is a link in their minds with being a potential mass murderer – even when there is no evidence whatsoever this is the case.
“We’re very concerned about families feeling stigmatized and being afraid to seek services for fear that their child will be seen as a possible ‘monster,’” said Sara Reed, director of advocacy and family services for an autism resource center in Connecticut. “We’ve done so much work in the last few years trying to reduce stigma and isolation – to help families get the support and services that they need and deserve. It’s difficult enough to raise a child with a disability. We don’t need misinformation and community ‘rush to judgment’ to make it worse.”
Journalists, please be responsible. Don’t just roll out the celebrity doctors. World-renowned autism expert Dr. Fred Volkmar of the Yale Child Study Center is right here in New Haven. Your shoddy work impacts our children’s lives.
Meanwhile, we parents will continue to explain to our kids, who have already grown up trying to overcome feelings of isolation and difference, that what Lanza did has no more to do with them than if he were diabetic or left handed – and I’ll admire and love my son more every day for teaching me to think out of the box.