- Apr 14, 2017
And that's if they are high functioning. Otherwise, forget it.
My room mate works with children with mild to severe autism as a school/boarding school aid. $500,000 a year per kid to basically keep them alive because they require 24/7 care that no one can provide on their own. The majority of the kids who get in there are from wealthy families or who were given up by their parents to become wards of the state and their school district pays for it. And even if you could afford it, space is severely limited. So you know there are millions of families out there trying to care for these individuals on their own because we don't have the resources to help them.
I never really understood autism/developmental disabilities until I met my room mate. Turns out we romanticize the f*ck out of it to avoid having severely difficult conversations as a society. Her stories are horrific. Not only how the kids and families are treated by "the system" but how this stuff rips families apart and devastates lives because we can't care for them. Society hides these people away and the romanticized ideas that are pushed out to us prevent us from having the difficult conversations about the lack of resources at every level.
We don't have "procedures and infrastructure in place" for these people and their families. Schools only take kids up to 18 or 21. Living facilities are scarce and you HAVE to be of a certain criteria. A lot of the students my room mate works with will never be able to be accepted into these facilities - a lot of them have self-harm tendencies and will lash out in violent ways towards themselves, towards staff, and towards other students. (A lot of places will not take kids who lash out in any way. And if they do it at the living facility, they will be released.) The outlook for these kids will either be 1. be released back to families who probably have aging parents and little to no access to resources; or 2. be put in a hospital and heavily sedated until the end of their lives; or 3. end up in some sort of jail setting from a crime/assault they committed. Job placement services only work if the person is super high functioning. They also are scarce and, like the living facilities, only take people of a certain criteria.
FWIW, there is no "right" answer. No matter what, a "life" is potentially "lost". My room mate has countless stories of parents, siblings, caretakers, coworkers, etc with extreme and lasting mental health related issues from trying to help and care for them (which we also don't have the resources for). The blame the parents put on themselves is worse than the blame society puts on them. And the quality of life of some of these kids is so unbelievably sad. You start to wonder which option is the most humane one.
Yeah I worked at a school for kids with developmental disorders in college (mostly autism and Down's) so I've had some experience in the area. I'm not going to pretend that I know what life was like for their parents based on my handful of hours there, but I've experienced it. And I have no doubt it's hard.
That said, the reason I differentiated between autism and Down's specifically in my original post is because those disorders are relatively common. Doctors/people know what it is and what they're dealing with. In my original post I was thinking more of disorders that are hugely rare and for which there are no widely accepted treatments purely because of their rarity. And if I could possibly force that life on a kid if I could help it.
The reason I ask is because it happened to a former teammate of mine. During her first pregnancy, her amnio showed that her son would be born with a chromosomal abnormality. She chose to have him. After the birth, doctors told her he wouldn't make it past a few months. Five years later, he's still around. Which she wears like a badge of honor and I really respect and admire her for it. But good Lord... her life must be so hard. I don't know if I myself could do it.