Susan's Blog

Wednesday, October 19, 2011

For Transition: Cultivate Your Autism Community

Just heard from a Facebook Friend that she is really bumming out over the Transition to Adulthood thing. Suddenly Post 22 is in the press; suddenly so many I know are thinking, “Uh, oh, what will happen when he/she grows up and school is over?

I have been there — I am there!  And I don’t have the answer. All I can do is talk about what I’ve learned so far. The biggest, most important thing for any autism parent to think about with Autism Adulthood Planning is: Your Community!  You go back in time, to the very people who helped you in the first place: other parents.

It is the other parents who will connect with you both emotionally and pragmatically.  You and the other parents have similar children, and now it is time to figure out just how similar they are.  The thing to do Pre-22 is to get really social really fast with the Autism Community and make a match with another family.  Here are some of things I’ve learned in this process of Transition to 22 for Nat:

1) Attend workshops to learn about the programs and funding sources, but just as important:  try to meet some people there. Get business cards printed, so you can give parents you like your contact info. Get their number and email. Start a file: Autism Parents I Like.  Whatever.

2) Write up a brief list of what is important for your young adult, or what he/she says is important. I am thinking only of the first five years in terms of living goals. Don’t take on more than 5 years at a time.  Think carefully about your adult child and imagine him at his happiest. Where is he? What is he doing? Who is he with? This is how your vision for his housing begins.

Write up your list with stuff like:

  • Kind of neighborhood he does best in
  • Kind of activities he enjoys
  • Need for public transportation? If he does well on public transportation, maybe you want him to live near a bus or subway or train so that, with assistance (or without) he can travel cheaply to other places, without needing a car or a van!  Think about zipcar, or one of those rental agencies so that you don’t have own a vehicle for this purpose.
  • What are his issues and challenges? How do you handle them?
  • How much money are you, the family, able to contribute monthly to his care?
  • Can he share a kitchen and bathroom?
  • What is the largest ratio of staff to roommates your guy can handle? Nat is probably okay with 1:4.
  • Can he be left alone at all? This is a dividing line.  Being able to be alone opens more doors in terms of living situations.
  • Who are his friends, and can any of them live with him?

3) Once you have your list, you can copy it and hand it out to prospective “suitors” or roommates.

4) Follow up with the families you like, and have a potluck dinner to get to know each other better.  Find out if you are compatible, and if your children are. Are they too bossy?  Are you? This is important to acknowledge before you partner up.

It began with support groups.  They saved you, right?  They are the ones who always get it. They love your kid and you love theirs.  It only stands to reason that when we all get older, they will be the ones we turn to again. Cultivate your peeps now!


OMG. Thank you! This is so helpful for me. It was ONLINE support groups that saved me 15 years ago. But I did go to a local support group for a time. Maybe I need to find that again.

Thanks for writing.


— added by Round World on Wednesday, October 19, 2011 at 6:47 pm

Also, I should say that my blog about parenting a person with autism was borne out of steps 13 – 15 of this post

— added by Round World on Wednesday, October 19, 2011 at 6:48 pm