I’m hitting the edge of some burnout right now, which is not really news in and of itself (there’s a lot of shit going down in my life), but what’s different this time around is that I’m very actively involved in an advocacy program and I’m seeing a. the types of services and programs that people who are less functional than I am receive and b. how hard it is to access services. Mixed in is the realization that most people don’t think of me as disabled. When I act disabled they get confused, frustrated, and angry. If you’re disabled, you’re generally expected to be exactly the same amount of disabled all the time. But that’s not how it works.
I can generally pass for neurotypical. I can be independent. Until I can’t.
There are two ways that this comes back to bite me in the ass: one is in terms of the services and supports I might want, and one is in terms of the personal blowback that comes from being disabled and neurodivergent. These problems appear either when I start to experience burnout from pushing myself to be functional for so long, or when stresses start to add up and I can’t keep up anymore.
There is literally no system in place to allow temporary respite for people with disabilities. There is absolutely respite care for families and caregivers, but there’s no system that will say to me “sure, take a vacation come stay at this place and we’ll feed you/take care of you, and we’ll cover your lost wages so that you can actually afford to take this break”. That sounds preposterous to me even typing it, because I have been so conditioned to think that I don’t deserve something like that, despite the fact that it would completely change my life for the better, make me more productive, more stable, more happy.
In order to receive services through the government, you have to prove beyond all shadow of a doubt that you are super disabled and really absolutely definitely need services or money. That means that if you are capable of holding down a job, if you make any amount of money, if you aren’t visibly disabled, you don’t get services, much less temporary services until you can get back on your feet that are easily accessible during a crisis.
Most services ask simple questions about your functioning rather than looking at how that functioning affects you. I can work, yes, but it exhausts me to the point that I sleep for 14+ hours in a go at least once a month. I can drive, yes, but it sets me on edge and gives me massive anxiety. I can call and make my own medical appointments, yes, but that’s about all I can do in a day. I have demonstrated that I can do these things, and now I’m expected to do them without any kind of repercussion to my well being because I’m “high functioning”. People don’t notice that they stack expectations very quickly: once you’ve demonstrated you can do one thing, they expect one thing AND.
If you can fake it for some amount of time, the system is not interested in the burnout or the toll it takes. It is not interested in prevention. It barely has the funding to help those who are already in crisis, much less those of us who would prefer to avoid a crisis.
On top of all of that, when you can mask for a while people start to think that that’s who you really are, or that it doesn’t affect you. We’re all so used to hiding our disabilities that when we can’t, it can result in all the ableism we’ve hidden from coming crashing down on us. Jobs assume that if you could complete the task yesterday you should be able to complete it today (and when you can’t you get consequences, or may even lose the job). Friends and family don’t understand why sometimes you can socialize and other times you can’t. It can look like you’re just an asshole if you work very hard to maintain relationships most of the time, but when you get burnt out you stop returning texts and phone calls or forget to reach out, miss a birthday, can’t be supportive.
Underlying all of these problems is the lack of recognition that “functioning” requires lots of other supportive activities: work requires showering and eating and transportation and sure maybe I can do one piece of that but not all of it. Maybe I can afford to maintain a home but I don’t have the spoons to keep it up and no one is around to help with that. Passing means being able to do all of the tiny things that keep up the facade around whatever you do: if you want to pass at work you have to pass enough to go out with coworkers, enough to bus or drive, enough to pack a lunch.
This is horrific for people like me. I can function well enough for long stretches, but one of the most common symptoms of autism in people like me (and particularly women) is exhaustion and fatigue. I am tired all the time. When I have a major event it takes me weeks to recuperate (case in point, my work’s conference and gala were two weeks ago and I’m barely starting to feel human again). If we’re lucky we find jobs and people who understand that our energy and functioning fluctuate, people who will pick up the slack when we’re struggling to get from bed to the car to work. But if we’re not lucky? We push ourselves until we can’t move, we become immensely depressed, we don’t understand what’s wrong with us because shouldn’t we be able to do all the things everyone else is able to do?
There are no supports when you can pass some of the time. It sucks.