Susan Senator

My brain is full of Nat’s future today. I think I am either going to have to write something huge about employment and independent living, or start a new organization (with my mother, who really wants to help) that will go and lobby Washington for new entitlements for adults with autism. Maybe I’m in a manic phase or maybe I’m just feeling the return of my old energy and focus and drive but — I feel I’ve got to do something NOW for Natty and those like him.

It is no secret that I am a champion of Late Intervention for those who are developmentally delayed. These days I absolutely abhor the mentality that pushes Early Intervention as a means of de-auticizing people (thanks to my dear friend NancyBea for that brilliant term). I am not opposed in the slightest to Early Intervention, mind you; I am talking about using it in the belief that a child will not need anything later on. That particular educational philosophy has some politics to it; I believe it is a way to justify funding for early childhood education (which is great) but by taking away from what older DD folks may need (which is terrible). What we need instead is more funding and programs all around for those on the autism spectrum, which have a bent towards improving any and all skills. If those programs result in more people in the mainstream classrooms, then great! But that should not be the only acceptable end result. Some people will never be in a mainstream classroom, and that is fine. They should still continue to have all the same supports, into adulthood.

Why doesn’t the funding continue? Who says that the needs stop at age 22? Why is education an entitlement but employment and independent living are not? I believe that we need to flip the goal of education around for some people and backload services — give them more as they get older, to be sure they will be able to do as much as possible with their lives as adults. When I think of what the little kids get, (10 hours home-based therapy in some situations, focus on play skills, toilet training, eating at the table) I just can’t understand why a person like Nat can’t get travel training, home-alone skills, phone use skills, street safety? If he were to get that training NOW for the next 5 years he would really have a shot at independence!!!!!! According to the Autism Society of America, only around 6% of people with autism (I’m assuming they mean moderate to severe, as opposed to HF or Aspie, but maybe I’m wrong?) work!!!! Excuse my language but that totally SUCKS. That is WRONG.

This is not a clever post it is a stream-of-consciousness post, which is the first stage of getting it out of me and getting myself into action. Stay tuned…