Sometimes it feels like I’m required to perform disability in order to be allowed to claim that I’m autistic. This is often a double bind for me. I’m too functional, many say, to be counted as autistic. So I don’t deserve any accommodations for my autism because I don’t need anything. I’m just supposed to work harder at appearing normal. It’s all on me.
But if I ask for certain things, for lights to be turned down, for people to not wear perfume around me, for music to be turned off, to be excused from certain social situations entirely, for people to send me written communications instead of verbal ones, for people to explain jokes to me — then I’m accused of being difficult. The very accommodations I’m asking for are common for autists, but it seems I’m not the “right” kind of disabled. People prefer disability to appear in a certain way, and they want to accommodate in a certain way.
Sometimes even among disabled people, I find it is hard to explain why autism is a disability. I don’t need mobility devices. I don’t need . Many disabled people have social skills at a level that leaves me in awe. Does that mean they’re not disabled? Am I really disabled? Yes, there are different kinds of disabilities and we’re learning as a society to accept them, to listen.
Please listen to autists when they ask for accommodations. Please do not assume that they’re being difficult because they don’t perform their disability in a way that is visible to you or that makes sense to you. By its very nature, autism is neurodiverse and neurotypical people often do not understand what we’re asking for. Can you be humble enough to be taught? Can you let me perform my disability my own way?
I wonder if having an official autism diagnosis before I retired would have made a difference in how I was perceived. One of my regular issues during the periods when I worked in an office (other than the lighting, the unergonomic ergonomic chairs, the noise level) was that I couldn't tolerate it when equipment or systems were broken. I HAD to fix things: vacuum cleaners or databases, it was all the same to me. If it wasn't working properly, but everyone just put up with the problems, I would assign myself the task of taking the vacuum apart and figuring out the problem so that it worked, or reconfiguring the various Access files to make a more useful database. I had no training other than what I taught myself, but fully believed I could figure things out -- and generally succeeded. Unfortunately, my inability to interact socially was problematic for others, which made me a problem even when the vacuum cleaner and database were improved by my hyper-focused efforts.