So, I knew I was adjacent to the autism spectrum and then, I read Rachel’s The Uncharted Path. I read about how she once had a lot more functioning capabilities, which she lost, and how she attributed that loss to burn-out.
I admit, when I first read that, I panicked for a good, long while. I wrote a lengthy post in near-hysterics about what Rachel said and what I feared. The post was highly emotional, a bit incoherent, and I asked my husband for his opinion before posting it. He agreed that I shouldn’t post it at this sensitive juncture (a reference you will either understand or not).
You see, it’s not that I’m afraid of being disabled. I’m not afraid of losing the ability to do things that I can do now. For me, unless I die very young, that’s inevitable. I’m a writer and I’m already showing signs of arthritis. I’m 32 years old. I use my hands and brain, almost exclusively to any other part of my body, for hours at a time several times a day, every day. So, unless I die young or arthritis is cured, I will lose the ability to work as I do now. I’ve looked ahead to that future, acknowledged that it will slow me down, and committed myself to not letting it stop me. If I lose enough functioning to be diagnosed on the autism spectrum, I can do the same. It’s not me I’m worried about.
There is a powerful, local government agency that has the authority—with few checks and balances—to remove children from the home of their parents. Here it is called Child Protective Services. For most of my teenage and adult life (the parts of my life that I was at all cognizant of their work), I was fully on-board with their mission. I’ve seen abuse. I know what it does to kids. I’ve seen kids have their lives ruined by abusive parents. I’ve seen some kids reclaim their lives, either as children or as adults. I’ve seen some people who struggle with reclaiming their lives every day of their lives. And I’ve seen some people who either don’t know reclamation is possible or have given up or continue to live in abusive situations their entire lives. I’ve seen it. I know. So, how could CPS be a bad thing?
For the same reason that autism advocacy is necessary at all. I was told: “No family should be burdened with three children with autism.” I was told: “The goal of therapy is to help your children become indistinguishable from their peers.” The person who said these words had tremendous influence with the local CPS agency, and when we didn’t comply with her “suggestions” to prioritize normalization or clinicalize our home, she called CPS—repeatedly. And they sided with her—completely. If they could, they would have removed the boys and put them in group homes for children with disabilities where they would live until they were normalized enough to be put into foster care. This was explained rather explicitly. Luckily, they couldn’t fabricate a case strong enough to make that happen.
But what if I burned-out? What if I became sufficiently disabled to qualify for an autism diagnosis? It would all start up again. The person in question would, if she became aware of it, begin harassing my family all over again. And I don’t think the autism advocacy movements have made enough progress for my family to survive the encounter.
So, I panicked.