Susan Senator

I am giving you the text to my NPR Commentary on the Lincoln-Sudbury High School tragedy. I also want to add that I am disappointed by the reaction from the Asperger’s Association of New England, who are quoted as saying in response to this that, “Physical violence is not at all typical of people with Asperger Syndrome (AS). AANE has worked with thousands of families, teachers, and other professionals for more than a decade. In that time, we have never before heard of a comparable event. We hope the public will remain open minded and open hearted, and not compound this tragedy by forming a sweeping negative stereotype about all people with AS.”

It is the first part of this statement that I have trouble with, not the rest. I think it is a little disingenuous of the AANE to claim that physical violence is not at all typical of Asperger Syndrome. I know at least two children whose behavior can cast doubt on that statement. But more to the point, what is really not helpful about this is that the AANE seems to be in effect seeking to separate themselves from those other disabled people who do have profiles of physical violence (like some people with more marked forms of autism, perhaps). The criminal defense lawyers know how to protect your rights.

Even if it were true, why set up this shaky divide? Obviously they are seeking to reassure the public, which in itself is a good thing. But what I would find far more reassuring would be a more honest stance, which would have been something more like this:

“It is true that, like most other people, sometimes people on the autism spectrum become frustrated to the point of tantrums, aggression, or other disruptive behavior. Coping with an often over-stimulated sensory make-up causes this to be an even more important issue when it comes to autism spectrum an Asperger Syndrome. We hope that the public will realize that there are many effective approaches and strategies for helping people on the spectrum handle their feelings and impulses and avoid outbursts. Employing such effective strategies is far more desirable for the diverse nation we are than taking actions that exclude and marginalize.”

— Susan Senator, Executive Director, AMI (Autism Mothers Inclusive)

And now, my Commentary:

They say that the worst thing that can happen to someone in this life is to lose a child. I think perhaps the second worst thing is for your child to have taken someone else’s life. When I heard about the stabbing of a teenager at Lincoln-Sudbury High School, I felt a chilling sorrow, because I have teenage sons. But when I heard that the suspect was a teen with Asperger’s Syndrome, a high functioning type of autism, my heart was even heavier.

Maybe this was because Nat, my oldest boy, has autism, too, though a much more severe form. He struggles constantly with his faulty neurological circuitry. I have often worried about him hurting himself or other people. And he has: teachers, classmates, family members. We have all experienced Nat’s tumultuous rages and outbursts; we all have the scars of nearly two decades of living with him.

But even so, no matter how hard it is, we can’t give up trying to get him to be a part of this world. And so Nat has come a long way from his more frightening behaviors. He has learned a lot about self control, to the point where he even has a job with Meals on Wheels.

Inclusion and independence are the biggest dreams of parents like me. Independence is Nat’s Harvard. I have always envied the higher-functioning autistic kids, the ones who are mainstreamed with typically developing children. With mainstreaming and inclusion, there is great opportunity for growth, but it is rarely easy. Parents and teachers have to find the balance between supervision and letting go.

I am afraid that the events at Lincoln-Sudbury will lead people to think that such inclusion is a dangerous thing. But the truth is, even in the most supportive environments, a tragedy can occur. Because adults miss the signs. Or because life is still unpredictable, autism or not.

Even when I feel discouraged, I can’t just surrender and hole up with him in my cozy house, away from the scary world. I suppose that is also the task ahead for Lincoln-Sudbury, for the victim’s family, and for the suspect’s family. They have to find a way out of their fear and get back to feeling safe again. We need to prevent further tragedies, but this must include being sure we don’t vilify autistic people or their struggling families.