Susan's Blog

Wednesday, April 18, 2007

Autism Works

I spent some time yesterday working on Nat’s future. No, I did not get out my old Tarot cards; I talked to people and did a lot of thinking. I realized one big thing: Nat’s adulthood is going to feel a bit like his early childhood, where there is no one clear path. What we have is a morass of trails in a very large forest. There are half-hidden footpaths that suddenly end; there are some that go a bit longer but we don’t know where the end up. There are guides who come and go, and some know more than others. The only thing that is clear to me is that once again Ned and I are Nat’s main bushwackers here and so we will have to put together our own route for him.

Now that I know this I am not scared. Not scared; angry and energized. I am so very furious that things are in such bad shape for DD/Spectrum adults. I am going to do what I can to kick the sleeping giant of the government, starting with finding out whether I can join Autism Speaks — Yes, that is what I said, Autism Speaks — and get them to 1) get some DD and autism spectrum adults on their board and into their subcommittees and 2) get them to use some of that huge muscle towards autistic adults. If I can’t, I am going to start Autism Works (get it?), with both autistic advisors and people like this guy, who I met at a conference where we were both keynotes (if I can get him). I’m serious. All of you who wrote me can help. I just pray that I don’t lose my drive to the gray maw of depression — but we all know that happens.

In terms of my Natty boy, there are no right or wrong answers here, just like his education. There are only better or worse supports and plans. We have to keep our knowledge of Nat fully wrapped around us, our eyes straight ahead on our vision, while opening up our minds to relevant suggestions. Readers, please excuse all of the histrionic extended metaphors here, I am a manic mother trying to figure out how to make the world work for my son.

I made some calls to people I know affiliated with our library so that I could find out whether any moderate to severely disabled people work there. I learned about the volunteer program there, where high schoolers do various (consistent) tasks to do with sorting books that come in. It seems like Nat could begin there, but he would need a job coach to help, at least to start him off, and a really openminded supervisor. I hope that my town, which is known in these here parts as an extremely liberal, progressive, crunchy, etc., outpost (similar to the People’s Republic of Cambridge, but more reasonable), will be able to rise to Nat’s needs. It is going to take a lot of liaisoning on my part, and perhaps some very convincing columns in the local paper about what we do well here and what needs improvement. I may have to do some shaming, but hopefully not.

It is going to take a tag team approach, Ned and me, just like always, where I get the idea, I make the initial contacts and forge the way, and he picks up when I start to flag.

So first I am going to get volunteering at the library written into his IEP, which is May 1. I am going to visit the library and observe the program and determine what his needs will be to adapt that workplace. Maybe some of my team should come with me.

And that is how we will start building Nat’s skills and resume. With little bridges and little steps and hopefully as few trip-ups and dead ends as possible. My boy is going to work and contribute and feel the satisfaction of a job well done — I know how much he loves that already. And our library will have a dedicated worker like they’ve never seen before. Cute, too!


1. Love the name “Autism Works.” That rocks.
2. We live in a “liberal, progressive, “crunchy” town, too. It seems those type of towns are the best places for our kids and families.
3. I would love to help, what do you need?

— added by ASDmomNC on Wednesday, April 18, 2007 at 8:02 am

Thanks!!! For now, I need to hang on to your email address/contact info, so you (and anyone else) who wants to help, email me personally. And then kick my ass into gear when I start to flag.

— added by Susan Senator on Wednesday, April 18, 2007 at 8:08 am

Here is what my town parent group is trying to do. OASIS (Ongoing Autistic Success in Society)

My son is still in pre school and though it is difficult for me to think this far ahead into the future, I know I should be. So, I will be trying to help with my group to get this project up and going in any way that I can.

— added by Anonymous on Wednesday, April 18, 2007 at 9:21 am

I just went to a conference and the presenters mentioned that statistically, the place that more adults with autism are out in the community working etc is North Carolina. I know TEAACH is based out of there etc… but it would be interesting to find out what they are doing.

— added by Anonymous on Wednesday, April 18, 2007 at 9:29 am

I’m sure your local library has lots of opportunites for him. Let us know what he’s going to be doing there and keep up the good fight.

You know how to find me.

— added by Someone Said on Wednesday, April 18, 2007 at 9:51 am

Sounds like a great plan. I’m sure with all the support he’ll be able to accomplish a lot.

— added by mumkeepingsane on Wednesday, April 18, 2007 at 10:44 am

‘works’ for me too. Glad that you are forging ahead for us to follow in your wake. I would add that I found OASIS on line and it was very useful for prep for IEPs.

— added by Maddy on Wednesday, April 18, 2007 at 11:42 am

Atta girl! There was a great video on You Tube about a young autistic man working in shipping and receiving who has done very well, and is a valued employee. The employer is interviewed and gives great kudos to the program that initiated this placement.

Our kids can and should contribute. I’ll send you an e-mail so you have contact information.

— added by Lisa on Wednesday, April 18, 2007 at 12:47 pm

We are in NC, and I can say that the services here are great. TEACCH is indeed here, and their services are free to all NC residents. They have autistic adults employed at their facilities, and do a lot of work with autistic adults in the community.

Susan, I will send you my contact information shortly via email.

— added by ASDmomNC on Wednesday, April 18, 2007 at 1:30 pm

Susan, that is just awesome!

— added by I Wax Poetic on Wednesday, April 18, 2007 at 4:07 pm

I think that’s awesome and if anyone can affect serious change, you can. My boys are still just two, and like anonymous said, it is hard to see that far in the future. I feel guilty knowing that you and other moms with older children are blazing the path we will all eventually walk. If I can help in any way, give me a shout!

— added by KAL on Wednesday, April 18, 2007 at 4:52 pm

I am so interested in what you do! My oldest son (almost 17) is fast approaching the time he’ll need to find meaningful work. School has been mostly a nightmare. Can’t wait to see what transpires.

— added by JoAnn on Thursday, April 19, 2007 at 5:52 pm

Brava — whether you succeed by changing Autism Speaks from within, or by starting a new organization. (Yes, I like the name “Autism Works”!)

Please *do* get the Autism National Committee ( involved. AutCom is that rare thing in the political landscape of autism — an organization focusing on the needs and rights of more severely handicapped adults on the spectrum, that is on the same page with its priorities as autistic self-advocates.

I’m now on its board and would be happy to help make further connections.

— added by Phil Schwarz on Sunday, April 22, 2007 at 12:25 am

A 13 year old boy tells Autism Speaks how to get it together at the end of this free audio podcast put out by midnight In Chicago…

“Special Feature Interview with Douglas Giesel and An Update Interview with Lewis Schofield”

Go here to listen:

— added by Anonymous on Wednesday, August 6, 2008 at 8:53 pm

I mean no disrespect, but what if your son doesn’t want to work? What if he’d rather just hang out? I don’t know much about people with developmental delays but having read “Riding the Bus with my Sister,” and having visited a workshop for people with Down Syndrome and other diagnoses I know that some of them don’t want jobs.
The clients at the workshop seemed to prefer sitting and talking or just chilling to doing the tasks they were assigned. One young lady told me she wanted to work in an office and go out after work with friends. Instead, her family helped her get a job that she disliked sweeping the floor and arranging merchandise at a deli. Obviously, the office job would be beyond her capabilities but she was savvy enough to resent the fact that the job she was able to do wasn’t very highly regarded.
Is work something that Nat likes for its own satisfaction or is it something you want him to do to fulfill your hopes for his future? In our society we tend too judge people by what sort of work they do and I imagine you feel happier telling people that Nat has a job.

— added by Ruth on Tuesday, June 15, 2010 at 5:41 pm