It Was in the File

Daisy sat in my room and said the sentence that should have been said fifteen years ago.

Because of your autism diagnosis, you qualify for IDD services.

I wasn’t entirely surprised. I’d already started looking into care options beyond the nursing home, and I’d learned that some places give IDD services to someone with autism and others don’t. I just didn’t know which kind this area was, or whether I qualified. So when she said it, part of me was ready for it.

The other part of me was angry.

The stuck years #

For fifteen years, we tried to work on independent living, and it never went anywhere.

My mom would teach me something. Then she’d expect me to take initiative, to start doing it on my own, or at least start it and then ask for help. I could never take initiative. I wanted to. The thing that lets a person start, the thing that turns knowing into doing, wasn’t there.

So it happened over and over. She’d teach. I wouldn’t start. She’d get frustrated. She said she was tired of teaching me the same things we should have moved on from a long time ago. Once she said she felt like I was stalled at a sixth-grade level when it came to independent living.

I don’t think she was trying to be cruel. She was tired, and she was doing it alone, and she had no framework for what was actually wrong. She thought the problem was effort. She thought if she taught me enough times, it would stick.

It never did, because effort was never the problem.

The diagnosis #

They started testing me when I was eighteen. They didn’t finish until I was nineteen.

The diagnosis was PDD-NOS. Pervasive Developmental Disorder Not Otherwise Specified. That was the formal name for autism back then, the category for people who had significant autism traits but didn’t fit the narrower boxes of classic autism or Asperger’s. It was the autism diagnosis, in the language of 2011.

The evaluation said it plainly. I met the criteria for a pervasive developmental disorder, and I was eligible for services under the category of autism.

Nobody ever explained that to me. I had a piece of paper that said something was different about my brain, and no one connected it to anything. Not to the initiative problem. Not to services. Not to the fact that there was a whole system built for people like me that I’d never been told about.

The diagnosis sat there for fifteen years, doing nothing.

What was written down #

The evaluation didn’t just diagnose me. It made a recommendation. It said I needed specialized educational services, and then it said the rest of it, the part that would have changed everything:

Home and community based services.

That’s the exact thing I’m only now getting, fifteen years later. The sentence wasn’t just never said to me. It was written down in my own evaluation in 2011, and then everyone ignored it.

I didn’t know that until recently. I’d never read the evaluation. Nobody had ever read it to me. So I spent fifteen years not knowing that the answer was sitting in a file with my name on it.

What the system sees #

The thing that kept me stuck had a name the whole time. A neurological disability that made it hard to initiate, to start, to turn a taught skill into an independent action. That’s the kind of thing IDD services exist for.

But services are gated behind diagnoses. And the system only recognized one disability at a time. I was blind, so I got blind services. The autism, the part that actually kept me from living independently, got folded into “she’s just not trying hard enough.”

My limits got read as behavior. And behavior gets corrected, not supported.

So for fifteen years, the answer to “why can’t she do this” was “she’s not trying.” And the real answer, the one that would have changed everything, was written down in 2011 and left there.

Relief and anger #

When Daisy said I qualified, I felt two things at once.

Relief, because I was finally going to get services. Real services. Not another person telling me to try harder.

And anger, because it took fifteen years. Because the information was there the whole time. Because my mom spent fifteen years thinking she was failing me, and I spent fifteen years thinking I was failing her, and neither of us was the problem.

The problem was that the sentence got written down, and then everyone stopped reading.

Still waiting #

This doesn’t end with me in a group home.

I’m still in the nursing home. I’m still waiting on a piece of paper, a formal evaluation that has to be finished before the placement can move. The answer arrived, and the waiting didn’t end.

That’s the part I don’t know how to write a clean ending for. The sentence got said. The door opened. And I’m still standing on this side of it, waiting for the rest of the system to catch up to what was already in the file.

But at least now I know what I was waiting for. And I know it wasn’t my fault.