The phrase “presume competence” is taking hold throughout the autism community, and this is a wonderful thing indeed. We−autistic kids and adults−face challenges in learning new skills, demonstrating what we do know, and maintaining our self-regulation in the big, bright, bold outside world. Oftentimes, our minds and bodies don’t relate to one another like they do for the NT cohort of the population. And, be honest−we’re all a little self-centered. When we see someone engaging in what is, to us, a strange behavior, we look at that action with the knowledge of how our own minds and bodies relate. That’s why so many autistic people are assumed by those who see us, even those who see us every day, to be intellectually, empathetically, and socially deficient.
That’s the sticking point, right there. The fact that others project their own understandings of human nature and ability onto what they see us do. But… often, we don’t work the same way you do.
Most of the time, the result of this is that we’re assumed to be incapable or otherwise not up to par with the rest of the world. And we do struggle! But the number one fail-proof way to ensure that we don’t gain the skills we need to communicate at our greatest potential is the fact that others believe we can’t do it. As long as someone believes a child can, someone is fighting for the child to continue to try new things or to persevere through a tough new adventure. The very moment the adult gives up is the moment that the goal becomes almost completely unreachable. Maybe the goal wouldn’t be reached otherwise, but there is always a chance, if everyone keeps working and trying and understanding more. Give up, and the goal is forever out of reach. Do not give up.
It’s pretty frustrating when people project their own understanding of humanity onto us and assume we come up lacking. The biggest factor in whether my body looks like those of others or whether it somehow gives off an air of “something’s different” is the sensory environment. So, when people meet me in the church lobby during a huge holiday event, I get questions like, “You can drive? A car?” and, “You went to college?!” Actually, I just finished my MFA. With a 4.00. There’s a brain in here and I quite enjoy using it, but when my body responds differently to the surroundings, others assume my brain isn’t capable.
And then there’s the other side. In a quiet setting, when I’m feeling well, clothes aren’t annoying and I’m not itchy and I don’t sit in fear of some imminent loud noise, the questions take another turn. “You have autism? But you look so… normal!” Same brain, same quirky personality… but my body appears typically engaged, and so the minds are blown in the opposite direction.
And that’s the direction that causes me more problems in life. People underestimating or patronizing me is sure frustrating… but the greater danger is actually when people think I can do or understand or communicate better than I actually do. And then, if they continue to deny that I can have a legitimate disability, based on their narrow understanding of autism, things have gotten ugly.
Since I deal with a lot of medical issues, one of the areas this affects me most is with doctors. I’m extremely hypersensitive to changes in my body. I don’t mean that I obsess over things that don’t really bother me but that I legitimately feel things to a greater degree than others would. And often, I complain about a symptom for days, months, or years before it becomes obvious to other people. I used to get extremely overheated in gym class as a kid. And in the last year, I’ve had more and more trouble functioning in heat, if you can call 76 degrees “hot.” This summer, I was struggling intensely. Finally, two months ago, I got a rash that no one could figure out… head to toe, bright red, and extremely itchy. After a few dead ends and some confusion, it turned out… that I have an allergic reaction to my own body heat, because I’m completely unable to sweat. I’ve only been saying it for how many years?
But the whole problem is compounded because of my communication challenges. I am very verbal, when it comes to sharing information. I also do well when I’m communicating something I’ve already written before… it’s like it greases the tracks of my neuronal pathways, and my brain says, oh, hey, we’ve been here before. But communicating complex things, especially pain, can be very difficult. When I’m telling a story, which is most of the time, as I’m always in the middle of a story, I pause a lot and have to find the right word. I don’t think in language, despite how verbal I am, so the whole translation process can take some hard work. And other times, I know the word but have to stop everything and have near silence to get it from my brain to my mouth. My whole syntax gets wonky when I’m working hard… “Did you say to her that the one would not be it to go?” That’s a nonsense example but definitely something I might say when talking to my mom as I was getting in the car, at the same time. My mom just about always understands me… and not many others do!
But say I’m at the doctor’s office and trying to explain my pain. I might know that I hurt but be unable to specify exactly where. My legs, yes, but maybe my back? I always confuse back pain and nausea. I realize that doesn’t make sense, but I truly can’t figure it out. Today, I was trying to tell a new nurse that… well, here we go. That my skin feels wrong. I kept looking at my mom and saying, “No, you know… that… that.. Help me.” Often, I walk around saying, “Something’s wrong!” for ages. It becomes a game of 20 Questions: check the blood sugar, check the blood pressure, the temperature, the heart rate, and any number of other things to try to find or rule out a clear and possibly sinister cause. And sometimes, those things don’t point us in a direction until the problem becomes apparent with more time. Other times, a blanket approach (taking meds for a couple of the top suspects at the same time) works, and I feel better without ever knowing what was wrong.
Doctors often just see what they assume is a perfectly capable young adult. They often think I’m 17 and not 27, but in general, there is no sign on my forehead that says “autism here!” I blend reasonably well, as long as I’m not in a very formal setting where blunders aren’t permitted or in a group with a bunch of my typical peers. I love Disney… just like their kids do. In my own crowd of family and friends who all have spectrum family members, no one blinks an eye at my combination of abilities, challenges, and quirks. But when I’m assumed to be typical, and yet I am unable to communicate in a typical way, some people assume I’m being fake, or they take my words the wrong way, or they think my advice to please, check with my mom, is ridiculous and unnecessary. Thing have gotten really, really bad as a result of some of these situations.
It all comes down to this: Recognize the ability, but never without also recognizing the role of the disability. There are far too many autistic people learning to communicate in middle age, having been assumed to have no intelligent thoughts their entire lives. There are far too many autistic adults, often women (not always) being blamed for their own weaknesses or told that they’re using autism as an excuse for the ways it truly affects them. It can be a complicated line to straddle… it means teaching, but teaching differently; learning, but learning differently, and it might mean a lot more work and a lot more false attempts. Never put limits on what we can do, but never assume we’ll do it like everyone else… Presume limitless competence, with the right support and accommodations in place!
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