Eyeing the Services Cliff

I started podcasting in November of last year, and have been super lucky to interview a diverse range of people affected by autism. And while my goal is to spotlight the humor on the spectrum, there are a few episodes that will occasionally sneak up on me and give me the cold sweats. Specifically, the interviews mentioning the pitfalls of aging on the spectrum, and the abrupt end of services coinciding with high school graduation- these ones haunt me.

I was chatting about the services cliff with one of Roman’s former teachers a couple of weeks ago: here in Maine, there is a huge waiting list and sometimes it takes YEARS to access job training or even the possibility of living in a group home. I don’t know about y’all, but that? Scares the crap out of me.

Roman will transition into middle school next year, and it occurs to me that he’s only got 7 school years left (and such a LOOOOoong way to go) before he could potentially attend college or hold a job. And while I’m sure that the amount of kids matriculating into college is on the upswing, studies show that less than half of our kiddos currently go to college, and a scant 6% hold full time jobs. I just threw up in my mouth a little bit.

When I spoke to behavior consultant James Ball, he asserted that our kids needed to master two major skills to hold a job: the ability to keep a schedule, and independent bathroom skills. Which is a great start and all, but I wonder what kind of job is the outcome of that particular skill set. Perhaps something in the port-a-potty field?

Recently, I caught up with Patty Pacelli on the podcast (say that three times fast!), and she added a little meat to those career bones. Independent living skills, previous job experience, interview skills, transition assistance, social skills training, work accommodations, interesting jobs… Now we’re talking.

With Roman, we’re making a plan. We’re charting a meandering path on the seven-year slow road, building skills in tiny increments and piling on the praise. We’re exposing him to all sorts of skill and confidence-building therapies and activities this summer to figure out possible interests and competencies. We’re bringing home successful school tactics like sticker charts and token systems, and giving choice time for completing non-preferred awesome tasks like chores. Then volunteering, job shadowing, part time jobs, college, and job placement. May the odds be ever in our favor. (<--Hunger Games reference, parents)



PS The haunting podcast episodes are with Keri Bowers: Episode 4 & Episode 5, Dan Korins: Episode 7, Cynthia Lord: Episode 28

PPS Check out these two recent articles on designing homes and urban spaces for independent autism living: “The Architecture of Autism” from the New York Times, and “Urban Design Can Change the Lives of People With Autism” from Fast Co. Design.

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