Susan's Blog

Monday, March 18, 2019

There’s No Place Like (Forever) Home in Autism Adulthood

“Live in ‘parment.'”

Back when Nat was transitioning out of school, at the beginning of his adulthood, we were able to learn from him that he wanted to live in an apartment. For a year leading up to his turning 22, I searched for apartments that he could share with a roommate or two, and a live-in caregiver. I took him along. I don’t know which of us was more excited. I figured we’d fund the caregiver through Adult Foster Care (a live-in caregiver who’d get a small tax-free stipend), and the rent through Social Security (SSI). Nat loved the city life he’d always lived, and so we wanted to duplicate this as closely as possible. We worked with a few families, but found we wanted different things: their sons had never lived away from home so they were looking for less independence in their settings. Plus they were country mice, and did not want the city mouse life that Nat did.  Plus I was a little too passionate (pushy) for them.

Since adulthood, from 22 years of age, Nat has moved a lot. By now he’s been in two publicly-funded group homes as well as three different publicly-funded shared living arrangements. I would not say that any of these situations were failures; each ended for good reasons. The first was a shared living-group home hybrid with friends and one new guy. It morphed into a group home when one of the families dropped out. Then this group home became Nat’s residence from 2011-2013. But that one started having trouble with another of the families, who dropped out. This was just before Nat left, in 2015, for a shared living arrangement for two years, in an apartment in the city, which had always been Nat’s preferred location. That shared living experience ended when we discovered Nat’s injuries. We still do not know how the injuries occurred so I do not necessarily hold the shared living responsible. Then from 2016-2018 Nat was in a new group home, which was very well-run. However, state-approved group homes are so risk-averse that they frequently opt for doing less than more. When the opportunity came for Nat to live with two musician friends/teachers, we jumped at it. We took months to prepare. But the providers only knew Nat a certain way and did not imagine he could be much more intense in his needs. They knew it but they didn’t know it-know it.

Nat is living at home again. Our wonderful experiment in shared living did not work out. There were too many issues for the young couple — it was far more of a struggle than the three roommates had bargained for. Nat became seized by a terrible anxiety that lasted for months, which I believe was partly a normal phase for him, and partly due to using an ineffective cocktail of medication.

Things were very raw for a few months while the providers and we worked on supporting Nat (and them) more effectively. But too many factors coincided that made this simply impossible, so we took Nat home. Just two weeks ago, though, we landed on Ativan, a very low dose at bedtime, and Nat has calmed down remarkably. But it was too late to make a difference to his providers, so we moved him home. So far, so good. He is very happy living with us for now, but yesterday I took the opportunity to ask him what he might like “soon.” Nat does not grasp the concept of the future too well in some ways; in other ways it is all he thinks about. His calendar is very important to him; he recites it with us daily and repetitively.

We enjoy this because it is a way to converse with him when he is very focused and motivated. We get a lot of talking out of him when he wants to talk calendar.

He is still very invested in where he lives, of course. So yesterday in the car I asked him about where he’d like to live, giving him choices rather than leaving it open-ended. Open-ended questions elude him because they have no structure. So I paired up a few options and finally got that he wants “parment with friends near the T.” Just love that guy and his valiant persistence to stand up and be counted.

So not much has changed for Nat, even though in some ways, everything has changed, again and again. But he’s rolling with it, and if he is, then I am.

Photo by Laura Senator


I love that he can tell you what he wants for his life, what a gift! And I am certain you and Ned will never stop until you create it for him. Loved this post!

— added by kim mccafferty on Tuesday, March 19, 2019 at 8:55 am

I can image that this could be stressful for Nat and the fact that he is rolling with it is amazing. Moving around frequently is a typical thing to do in your twenties!

— added by Susan on Tuesday, March 19, 2019 at 8:56 am

Susan, thank you for sharing Nat’s story and your family’s story. Your experience succinctly captures many of the key issues in community living for adults with disabilities, and debated within the disability community. Having a range of options to choose from…a complete range of options. Availability of openings. Having the right and ability to change his mind and freely move between different settings and have Nat’s funding follow him. Acknowledging that harm can occur even in a scattered-site community-based setting. And the big one…the staggering gap in qualified, adaptable, available staffing.

— added by Mark L. Olson on Wednesday, March 20, 2019 at 12:13 pm

I’ve come to the conclusion that housing/living arrangements for my autistic adult son will always be a work in progress. Devoted caregivers move on, or in the last instance The Learning Tree, who provided care for my guy since he was 12 (he is 22 now) just “decided” they would only house children, not adults, so he had to go. Back to square one having to find a new place. Adding to the stresses is the fact that, while I was visiting potential placements, an autistic man Matthew’s age was assaulted and murdered by his caregiver here in the town I live in. He’s at a good place now (I suppose) but how long I do not know. My son is basically nonverbal so I have to do a lot of reading his moods and behavior to spot potential problems. I ask him if he is happy and he repeats my word back to me. “Happy.” Okay for now.

— added by Sharon Jones on Sunday, March 31, 2019 at 4:01 pm

Sharon: we never know how long. I’m glad your son is okay, that is a blessing.

— added by Susan Senator on Tuesday, April 2, 2019 at 11:14 am