Late in life, I'm realizing that I'm too disabled to live independently. I'm a middle-aged woman. I'm autistic. In the past I've worked, cooked, cleaned, traveled, and taken care of my daily activities (food, hygiene, etc). But I've done those things with significant support from a romantic partner — which it turns out I can't manage without. We've broken up now, I'm living alone, and I am basically unable to care for myself (not eating or bathing, living in increasing squalor, can't work). What can I do?
To be clear, this isn't a life skills issue. I know how to cook and clean. In my last relationship I cooked and cleaned for both of us, very well, with no supervision or instruction. I know how to bathe and do laundry and I always took care of them for myself. I know how to keep a calendar. I have a lot of job skills, including "soft skills."
It also isn't about executive function or volition. I notice when I'm hungry or when I smell bad, I can remember how to solve the problem and keep track of the steps, and I feel motivated to do it. ADHD medication doesn't make the problem better.
What happens is, I get overwhelmed. If a situation is too chaotic or has too many unfamiliar details, I start to shut down. And when that happens, things like eating or bathing that add even a little extra sensory input become impossible — and when I don't eat or bathe, my life gets more chaotic, and I shut down more often, and on it goes. I've gotten into a lot of scary and embarrassing situations by shutting down in the wrong place.
When I've been in relationships, my partner would keep an eye on me, and help me calm down and re-regulate and start over when I got overwhelmed, and make sure I did the bare minimum to stay safe and healthy, and come with me on trips or to events when I was worried I couldn't handle them alone. I always thought of that as just them being kind and understanding about my autism. I didn't realize that they were actually my caregivers — that my "independent" life was in fact dependent on their care. But it was. In between relationships, and after my most recent one, I've always struggled to care for myself in basic ways or hold a job. I'm unemployed now, though I have a safe place to live for at least a few months.
I'm not sure what to do now. Are there services for adults at my level of functioning? (I'm in MA if relevant.) When I was in a relationship, I was able to work full-time in a tech-adjacent job. I'm close to unemployed now, and I definitely can't afford a paid caregiver. But I'm worried that a caseworker or insurance bureaucrat or whoever would be like "Sorry, you used to earn plenty of money and you've never needed help before, we don't think you qualify for this program." Also, while I did get formally diagnosed many years ago, I've long since lost the documentation and don't have any idea what the doctor's name was.
What do other people in my position do? I can try to get on SSDI but I hear it takes years, so I need a plan in the meantime. I imagine people some just get back into a relationship, any relationship at all, regardless of whether the person is suitable. I'm sure some live with family or become homeless. Are there other options |
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