Today we had to do an assessment to help with accessing future supports. It’s important for things like me having a caregiver, being able to live in the community instead of a group home or institution, and getting funding for therapies and services I need. However, there is a downside to these assessments.
It’s one of the most dehumanizing things I have to deal with. I have to sit and listen to people talk about my “challenging behaviors”, my meltdowns and how they inconvenience other people. They go through a list while I run my hands over a sequin toy over and over.
- “Is she hitting and biting herself?”
- “She’s still scratching during meltdowns, right?”
- “Is she having meltdowns multiple times a day?”
- “Difficulty with picking out clothes to match the weather?”
The list just keeps going, and I start getting impatient.
Even worse, they have to ask more friends these questions. All in the name of data, to show my “challenging behavior”.
I had to sit there and listen while my friends had to figure out how to balance on a thin line, oscillating between being respectful while also being required to explain in intense detail all of my support needs – down to the private details that I don’t even share on here.
Imagine that in order to get help, someone has to call your friends and ask about your “challenging behaviors”. Things that when typical people do them, they’re just seen as having a bad day, a little odd, or maybe just anxious/fidgeting. But if you’re autistic, it’s a Very Bad Thing and you’re being difficult. And it goes in our files forever. ¯_(ツ)_/¯
I see neurotypical people have “challenging behaviors” all the time, but no one ever tells them they need to go to ABA and learn how to be normal. The guys on campus who insist on walking around in the middle of winter with shorts on? That’s fine for them, but if I choose clothes that don’t match the weather – I’m being ‘difficult’.
If we’re going to talk about challenging behavior, let’s talk about all the times I’ve been called the ‘r-word’ or made fun of by direct support professionals.
Let’s talk about how I can name several times that being the only student in a college class with a visible disability got me singled out horribly – even in the special education department (don’t get me started on why I dropped that minor).
Let’s talk about the people who gave me PTSD from abuse, because I was taught from a young age that adults were right and saying no was bad – even if it was uncomfortable or hurt me.
Now that’s “challenging behavior.”