I find it hard to make friends at this point in my life. Not only are most of my peers are parents and occupied with the ubiquitous task of raising children, but I also don’t know who is safe to be around. When I meet someone I literally have to ask myself, “Is this person going to be a positive or a negative? Will they hold ableist views? Do they have the patience and understanding to be friends with an autistic person?
Most of the time, new people I meet bend towards the ableist side of things: they have no patience or understanding of what it means to be disabled and how difficult life is for people like me. This happened this morning. A person I’ve met since coming to Oregon posted a meme of a man who was a double amputee, his legs, and was working a construction job. The meme said, “Tell me again why you can’t work.”
Well, let me tell you. Again.
I got my first job at age 16 as a dishwasher for Friendly’s Restaurants. I quite a month later because the noise was too intense, and the pace was too fast for me to keep up. I worked pretty consistently for the next 20 years. I paid my way through college by always having a job and I worked full-time for my final two years. I got fired or “let go” of three jobs during this period, either because I made a series of social blunders, which weren’t tolerated, or I burned out (I was taking a full load of classes and was involved in student government, etc. on top of the unknown autism).
When I graduated college, I began working with kids who had “behavioral health issues”. Mostly oppositional defiance type stuff, but also autism all over the spectrum as well as attachment disorders. I worked this job for two years before getting another full-time job on top of it. Then I moved to New Mexico, where I continued working full-time at various positions I would eventually leave because I was burnt out by my autism and PTSD. I was a social worker, a landscaper, a gardener, a farmer, and finally, a therapist.
Here’s the pattern I would go through with a job over the past 25 years: I hit the ground running and immediately make myself as indispensable as possible. I work incredibly hard, take on a lot of projects and responsibility, and I shine as an employee for about a year, sometimes maybe less. Eventually I would burnout and become suicidal. I often ended up in the hospital for suicidality and would be forced to quit whatever job I was working. I took the initiative and got my master’s degree, and even finished a year and change of a PhD (which I left partly because I wanted to and partly because I was burned out). I tried to better my working situation but by the time I was 36 it was obvious my mental health was a long-term disability, which we of course now know is autism. It was always autism. Even part time work was untenable.
What causes burnout in autism? Social interaction, constant following of neurotypical societal norms that don’t fit with autism, making eye contact, trying not to fuck up social graces in the work place, masking anxiety and autistic behavior, constant overstimulation of sense with no time to recover, but most importantly: Having to be on stage every second of the work day so no one knows how hard things really are for you. If you don’t have autism, you’ll never suicidality and if I hadn’t been pulled from the work force I’m fairly certain dying by suicide would be a swift end to my suffering.
Adults with autism have incredibly high suicide rates because they are forced to work in environments the complete opposite of ideal, and they suffer in silence. Most autistic adults try and mask their autism, and this causes a great deal of stress and shame. When you are putting all your energy into not losing it at the work place you are inevitably going to lose it when you get home. Every task becomes much more difficult, like you’re moving underwater. Dishes don’t get done, rooms get messy, laundry piles up, hygiene becomes neglected. Forget about any wellness practices getting completed. I was just too exhausted to do any of this stuff.
Constant burnout with no recovery time does not work for autists. Our autism will decompensate (worsen) and it snowballs leading to complete lack of functioning in all areas of life. This is why I can’t work a real job. This is why I stopped trying. I didn’t stop working because I am lazy. Far from it, as anyone who knows me would say. I didn’t get on disability to fund my music. I did it because I had no other choice.
Let’s talk about what disability looks like. I get an $800 deposit each month that is supposed to cover my medication, food, utilities, and rent. Considering I paid into disability for 20 years, this is a meager amount. I am privileged because my wife has an amazing job and we’re able to afford our food and rent and all the other stuff, but it’s still hard and we are constantly on guard about money. As far as my music goes, I make very little. Some months are better than others, but for the past year plus I haven’t been able to make it on stage on a regular basis BECAUSE I’M DISABLED. See, even playing music requires so much effort that I often can’t do it and need to take months off from playing.
Anyone who thinks people on disability are doing it for a free ride is a dumb shit. If something happens to my wife I am completely fucked financially. I look at people living on the streets and think, “I’m one tragedy away from that life.” It’s a constant thought in the back of my head. It has been ever since I started being a social worker back in 2006. I was always afraid I’d become a client, and now I have.
Mocking people with disability shows an incredible lack of maturity, understanding, and empathy. I won’t stand for people like that in my life. It’s no use arguing with them, these days when you argue with someone you may as well be arguing against yourself. Also, arguing isn’t a strength of autism. It makes me uncomfortable. Instead, I’ll just write this passive-aggressive blog.
I don’t like being disabled. There are a lot of things I wish my brain was able to do that yours can, and one of them is handle working a job. But I accept my disability and its implications for my life. There’s an amazing amount of value in my autism and I wouldn’t trade it for the world.
People who aren’t disabled will never understand disability unless they work hard to wear the shoes of someone else.