Susan's Blog

Tuesday, April 17, 2007

Too Few Services For Autistic Adults

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…


I think a change of emphasis is coming from some quarters. We have a [local] expert, Michelle Garcia Winner who is doing great things for teens and ‘tweens.’
Best wishes

— added by Maddy on Tuesday, April 17, 2007 at 11:12 am

I would be interested in helping.
“They” say April is Autism awareness month.
Well I guess a few shows the first week of April is all the awareness we get.
There was no mention of anyone Nats age and how we can help him.

— added by Dori on Tuesday, April 17, 2007 at 11:18 am

I couldn’t agree more. It’s better to “invest” in our adult and older auties now so that they can be productive in society. It helps society as a whole and makes us ALL better to continue to help people live to their full potential whatever that potential may be. Everyone has value. Everyone can make a difference for the better in this world. We need to invest in our kids with this in mind.

— added by ASDmomNC on Tuesday, April 17, 2007 at 11:28 am

I was told at 15 months that my son was autistic, and made to believe that because we “caught it” so early, early intervention would, for lack of a better term “cure” him. So here we are, he is almost 3, has made very little progress and has even gone backwards in some areas. We love our little guy, but I am a little resentful about all the false hope we were intitially given, and how sometimes I feel like people insinuate we dropped the ball somewhere. In my opinion, many of the early intervention success stories stem from kids that really were never ASD at all.I see these kids at therapy all the time. Anyway, early intervention, even starting at 15 months, hasnt done anything for us. I’m hoping we have better luck with what is yet to come.

— added by eileen on Tuesday, April 17, 2007 at 12:06 pm

I so agree, and there will HAVE to be more focus on aid for older individuals as the wave comes up. Many school programs for older kids do address phone skills, travel training, etc though, and well they should. If those things aren’t in Nat’s IEP they can be.
Thanks as always for your voice.

— added by Em's Mom on Tuesday, April 17, 2007 at 1:13 pm

I live close enough to DC. I’m in. When do we start?

I’ve discovered that trying to write letters and stuff as one single parent doesn’t help much, and most folks around here have to fight so hard for services, they are scared to death of banding together lest they lose the services they’ve gotten.

— added by Joeymom on Tuesday, April 17, 2007 at 1:34 pm

This is great Susan. Keep it up and let me know what I can do.

Molly from MN

— added by Anonymous on Tuesday, April 17, 2007 at 6:37 pm

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