Back in February of 2008, my treatment team had decided that I should go to a training home for autistics in Deventer. They were somewhat confusing, so at first I thought they meant they wanted me in the so-called workhome there. A workhome is a combined living and working environment in an institutional setting. It is specifically set up for autistics with normal intelligence but severe autistic symptoms and/or comoribid behavior or psychiatric problems. There is a lot of structure, and the residents’ safety is a priority. It is made explicit that, while residents should be encouraged to follow their talents, they should not be overburdened.
In February of 2008, I was enraged that my treatment team thought I needed that. I didn’t need an institution. Okay, I had been admitted to the locked ward with suicidal thoughts, but those were gone. The only reason I was still there, is that no supported living place wanted me. My meltdowns, which apparently made it impossible for any supported living place to care for me, were used against me. I was going to be sent to the training home to unlearn those. Then, I could go back to living completely independently, they promised me, even though that was not my aim. I wanted stability after all. I wanted a place where I would not be overburdened. But I did not need an institution.
Just today, I took a look at the website for a possible future living placement. It is a workhome, and its web page makes it quite clear that it is for the more severely autistic (with normal intelligence), because care classes 5 to 7 are welcomed. I would qualify, being in care class 5. A visit has been planned for July 28, which of course doesn’t mean I will go there, since it isn’t a formal application and there are undoubtedly long waiting lists. I do have a few questions, but they are not about how it is way too protective and I don’t need an institution.
I still think, technically speaking, that I don’t need an institution, because I don’t think the most severe people should necessarily be housed on institution grounds. Ideally, I’d still live in the community, but I do want to be able to access the care I need.
On the other hand, there is a voice in me that says I shouldn’t give in to institutionalization. The voice tells me that I lived for nineteen years without any noticeable impairment other than blindness. If I graduated from a high level high school with high grades, why did I fail college? If I lived almost independently at training home, why do I need so much help now? There are two possible explanations for this: institutionalization and burn-out. There’s a part in me, Jane, that favors the former and tells me to go live independently. And there’s a part in me, Carol, who has always said she can’t hold on. Whom do I choose? Is there a way to protect Carol without keeping Jane from fulfilling her talents?