I’ve been trying to get disability for a few years now. I cannot seem to hold down a job for more than a few months, and it all boils down to my autism. Anything remotely social, and everyone turns against me sooner or later. In addition, I have problems with my hips and feet that prevent me from doing physical labor. So you would think I would be a shoo-in.
After being turned down, then contesting it and being turned down again, I went before a judge–and got turned down again. The good thing about going before a judge is that I was able to get details as to why I got turned down.
It turns out that you apparently cannot have pain caused by doing physical things, but can only have pain that is constant in order to get disability for pain. If you walk in without a walker, a wheelchair, or a cane, forget it.
It also turns out that my intelligence and Ph.D. count against me. While the judge did determine that I could not do any job that would require my education, that education still counted against me. Also, because I can apparently sit and read, or sit and watch T.V., or sit and play video games (I’m not sure where that came from, since I don’t play many video games, and I don’t play often, but it was listed), I’m capable of “paying attention.” Never mind the details of that. I have to read with a pen and paper nearby in order to write things down as they occur to me as I read. It’s not uninterrupted reading. To do the best reading, I have to go someplace with a little background noise to create enough of a distraction that I don’t distract myself. T.V. comes with commercials, during which time I’m up and doing something, or I’m reading.
The judge also did not take into consideration the fact that I was able to get a Ph.D. because I was focusing on my obsession at the time. Of course autistics do well with their obsessions. The problem is that people think, “If you can focus on your obsessions, you can focus on other things.” Unfortunately, that’s simply not at all how it works.
When I work, I get distracted all the time. I have to have paper and pen close by in order to write things down so that I can get it out of my head, or I obsess over it and can’t get my work done. The problem is that when people see that, they think I’m “goofing off.” But it’s a necessary part of my process.
There was also the issue of my memory. My exceptional long-term memory counted against me, and the judge had mixed information from the neurologist and two psychologists who diagnosed me, so he basically determined I don’t have issues with short term memory. Oddly, while the neurologist explicitly told us that I have short term memory amnesia, this didn’t end up in my official diagnosis. If you’re not autistic, having terrible short term memory and excellent long term memory makes no sense. People don’t really differentiate between the two. But having bad short term memory affects executive function and planning and how one learns.
Also, being married, having kids, helping take care of the kids, cooking, and shopping on my own all counted against me. Yes, my ability to spend a half hour shopping in a store, where I can ignore most of the people there while concentrating on finding the food I need, is apparently equivalent to spending 8 hours actively interacting with people. Also, feeding my kids when I eat and otherwise letting them play and watch T.V. when I’m at home is equally equivalent to working a full time job. Being married means I have someone who helps me–and yet, this somehow counts against me.
The judge also counted against me that I didn’t do any followup therapy or medical diagnoses, or get medication for my anxiety. Never mind that I have a hard time getting myself to make appointments, etc. precisely because of my anxiety. I hate going to the doctor, I hate taking medication, and it all makes me extremely anxious. But he didn’t ask me why I didn’t do any followup, so he doesn’t know these things. He just assumes that because he always has insurance, I can pay for everything all the time. And he just assumes that because he can make appointments, it’s easy for me to do so. It’s not. I went several years with a cataract in my left eye before I was able to get myself to make the appointment to get the surgery.
In the end, the judge’s conclusion was that I was capable of doing either assembly work or packaging. When I asked whether or not he would hire me for such a job given my resume, he said that wasn’t relevant. But of course, we all know what the answer to that is. The only places where I could theoretically work would never hire me with my resume. If I don’t put my full education on my application, I lied on my application, and they could fire me. If I do put my full education on my application, they won’t hire me in the first place. So I’m stuck between my autism and my education.
The good news is that I am currently working. It requires me to stand for at least 6 hours a day, and at least half the time I’m surrounded by a lot of people. And it doesn’t pay much, though it’s better than minimum wage, and they have great insurance. My feet are in constant pain, and severe pain periodically shoots through my hips, but I don’t have a choice, so I have to just suffer.
I suffer because nobody wants to believe me. They have no experience of my world, and so don’t really believe such a world exists. I’m not sure how to convince them it does.