Welcome back to Reading the Research! Each week I trawl the Internet to find noteworthy research on autism and related subjects to share with you. Along the way I discuss the findings with bits from my own life, research, and observations.
Today’s article serves as an introduction to the autism services cliff. This is what people call the sudden drop-off of services after the autistic person graduates or ages out of high school. You see, there are typically a lot of therapies and services offered through schools. Things like a one-on-one aide, or speech and language therapy, or occupational therapy are typically managed and implemented by the school.
Take the school out of the equation, and the autistic person is left with nothing, or almost nothing. Because of this sudden loss in services, autistic people often struggle at the transition between high school and adulthood. Some autistic people, like me, still manage to land on our feet. Others try very hard but still don’t succeed in the long term. The parents I’ve spoken to often talk about failed attempts at college, or long strings of jobs held for only a month or two. It’s not all stories of failure and crushed hopes and dreams, but there’s certainly enough of those to dishearten someone quickly.
Photo by Alex Fu on Pexels.com
This autism services cliff typically strikes between ages 18 and 26. Like a lot of things in the US, the maximum age someone can stay in school varies by what state you live in. In my home state of Michigan, that age is 20. Even before that age, though, the difficulties can begin with the loss of child Medicaid.
Transitioning to adulthood doesn’t necessarily mean losing Medicaid for good, but the requirements are significantly different. The rejection rate is very high. When you apply, bring a great deal of perseverance and the expectation that you’ll need to try at least twice. Neatly organized documentation of the disability and the need for services across years of the person’s life helps a lot.
This is why a Medicaid waiver, such as the ones mentioned in this article, can be so valuable. They can continue the autistic person’s Medicaid services into adulthood without disruption. Keeping these autism services and structure over the transition to adulthood can be incredibly helpful to an autistic person’s wellbeing. But even beyond direct services and Medicaid, a lot of structure is simply lost after you leave school. You can’t count on the easy exposure to groups of your peers any more. Nor is there usually free transportation to activity hubs with a variety of options. And now you need to both find and pay for sports facilities and other programs.
The only comparable organization is church. Like schools, churches can offer structure and groups of peers. Some churches offer small group Bible studies or household groups. Some churches may have simple sports equipment, such as a basketball hoop, or a field in which a pick-up group might play soccer or frisbee golf. If nothing else, a church can be a place for autistic people and our families to find structure, activities, and community.
Personally, I’d like to see a universal healthcare replace Medicaid. One of Medicaid’s typical features is the requirement that the receiver be painfully poor. Working part time at minimum wage can be enough to disqualify you, depending on which state and program you’re in. I don’t know if you’ve noticed, but part time jobs, even those that pay above minimum wage, are rarely enough to live on.
Instead, I’d rather have a healthcare that provides for everyone. If a family needs respite care, they should have it. If an autistic person needs help making a schedule or getting a job, that should be available. I don’t feel like we should make people present 20 pages of documentation to prove their need. That’s just another way of punishing people for existing. It doesn’t make the need go away, it just makes the person suffer for having the need.
Personally, I think punishing people for existing is pretty much inexcusably evil.
(Pst! If you like seeing the latest autism-relevant research, visit my Twitter! There are links and comments on studies that were interesting, but didn’t get a whole Reading the Research article about them.)
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