My autistic son was diagnosed in 1992, at age 3, back in the Autism Dark Ages, when dinosaur moms like me sometimes still believed autism was their fault.
That was before Brookline even had any autism programs in the schools; before the Lynch Center had its excellent autism classroom; before anyone ever heard of home-based therapy for autistic behavioral challenges; and before Brookline parents could attend support and training sessions, run by school personnel, to help care for their disabled children.
Back then, it seemed like this diagnosis was the worst thing that could happen to my family. I remember how hard it was to know what to do: Which approach to take, where the good education programs were. There was very little information available; I found all of two books in the town’s entire library. I was scared, confused, angry and alone. How would we handle this new situation? What kind of a life would we, as a family, be able to have now?
In many ways, it turned out that it was the lack of support and expertise — rather than the autism diagnosis itself — that was the worst thing. How I longed for some help at home! But in 1992, very few children were being diagnosed with an autism spectrum disorder — 2 in 10,000, according to the CDC. Autism was not on anyone’s radar screen. My family needed help and guidance.
Increasingly, our efforts centered around education. Our family focused on improving Nat’s communication, social and cognitive skills. Connecting to Nat, helping him be his best, and living with his complexities became our priorities, so that we could all have a reasonably happy home life balancing all of our needs.
Things began to fall into place for us even more when Nat qualified for the Family Support Program in our state’s Department of Developmental Services (formerly known as the Department of Mental Retardation). That little bit of money went a long way. The yearly funds allowed us some time off from Nat several afternoons a week. We hired respite workers — often Boston University or Simmons students, occasionally Brookline special education paraprofessionals, and sometimes even Brookline High students — to work with Nat after school. They worked on all sorts of issues, like appropriate behavior, play skills and communication, and the rest of us could relax a little, for once. Having them there to engage with Nat, we could enjoy ourselves, too, at last, and I could focus on my two other sons. I feel that the Family Support Program, as small as it is, may have been instrumental in helping my son grow over the years — that, and talented, caring teachers.
I look back and I see that we managed to do what we’d set out to do, which was to balance all of our needs, while also helping Nat thrive in this complicated world. Now, he lives semi-independently in a small group home at his school. He has an active social life through the Special Olympics program run by Parks and Rec. He also holds down two part-time jobs, with the help of a job coach. He could not have done any of this without his comprehensive education. And we could not have done right by him without the family supports we received from the state.
But now, with the governor’s proposed drastic cuts to the Family Support Program, as well as to early intervention, adult day programs and work supports, I wonder how those like Nat and their families will manage, in Brookline and statewide. With a jump in the numbers of those with an autism spectrum disorder — now said to be 1 in 150 people — how can anyone even think of cutting such valuable programs?
Autism awareness has, at long last, brought this difficult disorder to the nation’s attention, so that autistics and their families have resources and adequate supports. Autism families still need guidance, as do their children, during the school years and as adults, and the funds provided by the Department of Developmental Services offer definite help, however small the amounts may be. And Brookline, however terrific our schools may be, cannot be expected to do all of that alone.
I could never have imagined the groundswell of autism awareness that has grown over the last decade and a half. Maybe now, with all this momentum, we can channel that powerful energy towards maintaining services for those who are still struggling to live with autism as productively as possible, while keeping their families — and their dignity — intact.
Copyright 2009, Susan Senator