I get so frustrated.
Adults with autism, and even some parents, tout autism as “not a disability” and that we are just “quirky geniuses.” I’m not saying that autism doesn’t have its perks, but running around saying that it’s “just a difference!” leads people to believe that I should be able to do things that, at least right now, I can’t do, and that frustrates me.
I think many of these people who have jobs, and hubands or wives, even kids, don’t know what autism is like for those of us who live more like me. I include in my list all of autism’s friends (anxiety, OCD, GI issues, possible seizures or whatever my “episodes” really are), as without autism, I likely wouldn’t have these issues. For the record, I could also write a list of all of autism’s positives and paint an entirely differen picture of it. I realize that. But that’s not the mood I’m in, nor the point I’m trying to make.
So, autism is not having a car but being unable to cross the street by yourself, leaving you stuck in your apartment when staff isn’t here.
Autism is relying on other people (your mom or your staff) to help you communicate.
Autism is an innocent mother-daugther tradition (ice cream after unfun medical procedures) getting cut short because the ice cream makes you sick within minutes.
Autism is your mom having to deal with all of your professionals and clinicians. This means having to share every. single. detail. of your life with your mom, even though you’re an adult. I love my mom to death, but sometimes I wish I could have privacy.
Autism is having a sensory system so confused that you live in a fractured reality. You go from present to not present throughout the day, and your memory falters frequently.
Autism is not knowing what day of the week it is or what time of the day without checking over and over again.
Autism is calling your mom because you want to hear her voice but being unable to actually speak to her.
Autism is underlying anxiety that’s so pervasive that you don’t actually know if you’re anxious anymore, since it never goes away.
Autism is wanting to work, but every time you try you end up hiding, cowering, crying, panicking somewhere, and your every waking moment becomes dominated by fear of going back to work.
Autism is every time you turn around, you realize you’re picking or scratching or biting at yourself.
Autism is being unable to sit through a church service due to sensory issues.
Autism is “feeling funny,” but being unable to tell if you’re hungry, sick, have low blood sugar, or have to go to the bathroom, or have a hair in your face.
Please, rather than going around saying that people with autism aren’t disabled and are just wired differently, try saying that autism is a spectrum that affects each person differently!