Susan Senator

I learned today that autism support guru Gail Kastorf, has died. My heart hurts hearing this because Gail was my very first support group leader. Gail was the one who showed me I was not alone. Her pamphlet, from the Autism Support Center in Danvers (1993? 1994?) was the first hands-on information I had every been given about autism. I wrote about Gail in my first book, Making Peace With Autism, Shambhala, 2006):

Reaching Out

My next step was to locate other people like me. I called the local branch of the Department of Mental Retardation, [as Department of Developmental Services was called back then], which ran an autism support group at a nearby office. My first night at the autism support group felt to me like coming home.

In this room full of strangers, I listened to story after story like mine. The mother whose child would not eat and for whom even the great Children’s Hospital of Boston had no clear diagnosis, who had finally returned home to Venezuela only to hear from her old family doctor the word she had been fearing all along: autism. Or the father of twins, one normal, one disabled, who had been given multiple diagnoses but who kept hoping and emphasizing the positive, only to realize that all the diagnoses were euphemisms for autism. Or Sheila, whose son had just been examined because the doctors suspected a hearing loss. He had not spoken a word until he was three. Yet testing revealed that his hearing was perfect.

The more horrible the story, the better I felt. Hearing the stories enabled me to formulate a story of my own, an explanation for what had happened to us, and tell it to the group. It went like this: Nat’s lack of interest in peers, toys, playing, all were clues if I had been strong enough to follow through. My pediatrician had also dropped the ball. If only she had known more about the early signs of autism! I should have trusted my gut. Because of the delay in diagnosing Nat, he had missed out on at least a year of potentially helpful therapies. What grim satisfaction I felt telling my story! It made me feel like a different person, cynical, hardened, and wise. I reveled in the eccentricity of the children discussed in the group; the collective misery we all felt was a balm to me. I found strength and relief being with people who had been wounded like me, who had lost the dream of perfect children, who understood how harsh this world can be.

I told [my husband] Ned about the meeting, but going to support groups was not his thing. He had a hard time knowing what he was feeling at a given moment, let alone expressing it, especially to strangers, so he stayed home with Nat and Max while I went to the group. He took over giving them their baths, and loved sitting with them while they played in the bubbles. He read to them constantly, fervently. He also found comfort in making to-do lists. I would find little index cards scattered across his desk and dresser, with items on them like “Call school people” mixed in with “Talk to roofer.” After each support group meeting, I related what I had heard to Ned, recreating the session for him. It was the tender beginning of a shared experience that allowed us some distance from our grief. Together, we analyzed the people I had seen at the meetings, comparing their families to ours. Ned was my sounding board, my information synthesizer. But I think if he had gone with me to the support group, he would have broken down and cried as soon as he tried to speak. Instead, every now and then, he would lie back on the couch and sigh, but he wouldn’t say anything. He didn’t have to.