On (Not) Getting Disability When You Have the Hidden Disability

Over the past several months, I have been trying to get Disability from Social Security. Today I have been denied for the second time. Let me quote the most recent rejection letter:

You said you are disabled because of autism, aspergers, hip displasia, flat feet, anxiety, sensory integration disorder, and memory loss. However, your current symptoms are not severe enough to be considered disabling.

Apparently being unable to stand for long periods of time because of ever-increasing pain from flat feet, being unable to do physical labor because of constant and ever-increasing pain from hip displasia, being diagnosed with general anxiety disorder by the psychologist they sent me to, and all of the issues associated with autism/Asperger’s, including short term memory loss issues and sensory integration disorder, doesn’t make you disabled.

Those who have been following this blog know many of the problems I have had with getting and keeping jobs. If I even get a job after the interview, I cannot seem to hold on to it for long. Literally, the longest I ever had a job was a little over a year and a half. I had two such jobs. One of them I left because I was moving from Hattiesburg, MS to Dallas; the other was at UNT-Dallas, where my contract wasn’t renewed.

All of the problems I have had with remaining employed have stemmed from my autistic behaviors. The problem is that, if autism is a hidden disability, it seems to be so hidden with me that for the longest time very few people, except those who knew me very, very well, would even believe I as on the spectrum When you meet me, I’m often articulate, I can be charming under the right conditions, I’m highly educated (Ph.D.), and I’m highly intelligent. I can fake it for a fair amount of time. Enough for many to think I’m merely a little introverted.

The problem is what happens over the long term, or if I’m not in ideal conditions. If it’s too loud, too bright, too crowded, I start to feel overwhelmed. My anxiety–which I have learned really never goes away, but only waxes and wanes like the tides–increases, and as my anxiety increases, I become increasingly irritable. Over time, you will see me “goofing off,” which really means I’m writing something down to get it out of my head so I can continue to concentrate on work. But of course, you can’t do anything non-work-related on company time (except gossip, of course, which I don’t do and which takes up far more time than it did for me to write the one line of poetry I needed to get out), so I get in trouble. What they don’t realize is that I’m actually doing what I need to do to ensure I can dedicate the maximum amount of time and concentration to work. But how do you explain that to anyone?

The letter I received goes on to state that

Although you said you have various limitations caused by your symptoms, the evidence does not show that your ability to perform basic work activities is as limited as you indicated. We do not have sufficient vocational information to determine whether you can perform any of your past relevant work. However, based on the evidence in file, we have determined that you can adjust to other work.

I find all of this very curious. And it indicates there is something wrong with the way disability is determined, such that autism is almost always going to be discounted as disabiling. The fact of the matter is that my “ability to perform basic work activities” such as editing, proofreading, and writing is not limited at all. I can do that kind of work, and likely similar work, such as data entry.

But work isn’t just “show up, do your work, leave.” If work were like that, the unemployment rate among all but the most severely autistic would be 0%. Rather, depending on how it’s measured, the unemployment rate among autistics is 20%-80%–the latter for all autistics, and 20% for people who are “mildly” autistic. Why is that? It’s because work is primarily social, and when the requirements of employment are being able to be social and not be “socially awkward” that autistics face high unemployment.

My disability only becomes apparent over time, and few would even recognize it as “disability.” It gets interpreted as inattentive, goofing off, having a bad attitude, and sometimes even lazy (I was always working on projects growing up and was always told I was lazy). Each of these are neurotypicals misinterpreting the way I think and behave. In other words, my disability is only invisible to the degree that non-autistics misinterpret my expressions and actions. And even if I tell them what to expect, can we really expect them to always remember not to interpret my interactions with them through the same lenses they use for practically everyone else?

In other words, how can I get Disability if my disability is invisible? How can I get Disability if the people who are giving it out don’t really believe it’s a thing, but is just made up, is just problems with your “personality,” or whatever else they may believe when faced with someone who behaves as I do?

And I know it’s not just me. My guess is that most autistics face these issues on a daily basis, and not just when it comes to work. But where are the advocates for us? I know there are advocates out there, but I’m talking about public advocates, someone people know, out there talking about these things.

Here is where my articulateness, intelligence, and education may be able to come in handy. I’m actually a good public speaker. Perhaps, if I could find the right venues, I could use these very traits that make me an even more invisible member of the invisible disability bring greater visibility to these very issues.

Unless someone does this, how much of a chance do we have to thrive in this world?

 

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