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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Connecting and Communicating on the Spectrum

If you have a verbal child on the spectrum–or adult, for that matter–you are likely familiar with the phenomenon of obsessive interests, and the seemingly intense need for the autistic person to share everything they learned right this very minute. And Heaven help you if you’ve been away a while while they have been learning about their interests, because you’ll be sure to be bombarded with information the moment you see them.

Now, before I address what is going on, I want to make a point by addressing my autistic readers (neurotypicals: keep reading, because this is really mostly for you).

Austistics, if you have a neurotypical person in your life, you are likely familiar with the phenomenon of that person coming home and wanting to share with you everything they did that say and every social interaction they had. While you couldn’t care less about any of that stuff, you need to understand that those things are important to them. They think sharing such information is an appropriate way to create social bonds. While we bond over knowledge, designs, and ideas, they bond over gossip and complaining about what other people do. That is their passion, and that’s what they get excited and emotional about. So please be patient with them about their interests. It may seem silly or superficial to you, but it’s not to them. So let them have their say; don’t try to solve their problems (they hate that and only want to express themselves), even though you will likely come up with a clear and obvious solution; and try to at least feign interest by acknowledging them, asking questions, and demonstrating empathy for their position. The best course, too, is to take their side no matter what, even if it’s clear to you that they are in the wrong, or could be wrong–especially close friends and spouses, coworkers and bosses. Remember, they only want you to listen and take their side; anything else will offend and upset them.

If you do not have autism, this is how you appear to us. You think it’s ridiculous to talk about the application of complex network theory to understanding the economy, designing better slaughterhouses, or blowing up the Death Star, the behaviors of basking sharks, or what happened in Nausicaa (Daniel’s latest obsession); we think it’s ridiculous to talk about what Bob did to Sally at work, that George is having an affair with his boss, and that Mary is being mean again.

The point is that we’re both wrong; neither is in fact ridiculous; both are vitally important to the person; each is desperately trying to connect to the other through their interests. Neurotypical people are primarily interested in people; autistic people are primarily interested in things and ideas. Autistic people, by sharing their interests, are trying to make a connection with you. They are trying to be social. They’re not being social wrong, they are being social different. And when you rebuff them, you discourage them from trying to be social and you hurt their feelings. They then retreat into themselves and are less likely to try to be social in the future.

At the same time, if we were to treat the way you connect the same way, you would consider us to be anti-social, rude and arrogant. In fact, we are often considered to be all these things. This is reinforced by the fact that what we want to bond over is typically intellectual, nerdy, and/or geeky. You think our interests are stupid and annoying, and we feel the same about yours. But it is we who have to adapt.

In short, it is the responses and reactions of neurotypical people to our attempts to bond that contribute as much as anything to any sort of unsocial behavior. When our family sits at the dinner table together and Daniel wants to tell us something, we express interest in the topic, asking questions or otherwise contributing to the topic at hand. As a result, Daniel has been talking more and more. And he’s grown more interested in us as a result. Imagine that! We express interest in him, and he expresses interest in us.

Neurotypical people develop their identities through their interpersonal social networks; autistic people develop their identities through their interests. They identify with their work and interests, meaning if you dismiss their topic of conversation, you are dismissing them personally. That, at leas,t is how we interpret it. It is similar to if someone told you that your friends were all stupid and hateful and they didn’t understand why you would like those people. My guess is that you would distance yourself from that person. Because when they insult your friends, they insult you. For us on the spectrum, our obsessions are our friends. We listen to you talk about your friends; we only ask you listen as we talk about ours.

So that’s why we on the spectrum want to share our interests. It’s how we try to bond with you. In addition to that, we want to share when we want to share because what we want to say is present to mind. That means we can remember everything and communicate it well. If you make us wait, we may not remember in that moment, and it’s likely we will have to search for everything we wanted to say. That means we’ll be full of long pauses, uncertainty, and frustration. Frustration you will probably share since you don’t understand why we’re so hesitant now when we were so enthusiastic before. You need to understand that when the moment passes, it is impossible to recover. And we’ll be likely to forget half our points even as we know we forgot half our points, making us more frustrated–and more determined next time to get it all out.

So now you know why it is that we on the spectrum want to talk about the things we want to talk about, and why we feel such an urgency to do so. Part of the urgency is the way our memory works, but part of it is the same kind of urgency you feel in wanting to tell your friends and loved ones about what the other people in your life did. And that’s something we should both be able to understand.

Social Bonding and the Gut

Many with autism have gut problems, and most of the time those gut problems are related to the bacteria in our guts. I certainly have gut problems, especially but not exclusively related to gluten, so you will on occasion read something on gut-related issues.

Which brings me to recent research that showed that there is a relationship between the kinds of bacteria present in the gut and degree of social bonding. While close social bonds will result in the easy spreading of pathogens, they will also result in the easy spreading of beneficial bacteria as well–which can in turn reduce the likelihood of getting pathogens. We also know that the greater the biodiversity of one’s gut flora, the healthier the gut.

Of course, if strong social interactions, including frequent touching, is necessary to maintain a strong immune system and a healthy gut, it should perhaps not surprise us that autistics have immune system and gut problems. Many of us are very sensitive to touch, especially human touch, and try to avoid it (either directly or indirectly), and this sensitivity can very considerably from day to day.

Social contact, stress physiology and gut microbiome are all intensely related. Your social contact defines how much stress you interact with, and both can influence the cocktail of microbes in your gut.
Of course, autistics are famously anxious and stressed as well. Well, it turns out that high anxiety is also connected to touch, as I’ve noted before. Lower stress also helps you maintain healthy bacteria in your gut, so strong social bonds that include a great deal of touching is both directly and indirectly beneficial to your gut microbiome. Equally, avoiding such contact means you won’t benefit from these same social gains.
Ironically, given the fact that social interactions cause us anxiety, and yet we need social interactions to reduce anxiety, we on the spectrum seem to be fully impaled on the horns of a dilemma.

Asperger’s or Introversion?

When I first came to understand I have Asperger’s Syndrome, I had many people tell me that I am merely introverted Well, I am certainly introverted. But let us consider the Asperger’s Fact Sheet and the criteria. Do I meet them?

  • Do I have an “all-consuming interest and a one-sided, self-focused social approach”?

As a child I was obsessively interested in dinosaurs, then sharks, then orchids.  I would make lists of dinosaurs or sharks or orchids; sometimes those “lists” would be drawing after drawing after drawing — in a list-like fashion. They would be labeled with data about the dinosaur or shark or orchid. Length or location or some sort of objective fact.

I am still obsessively focused, but the focus has become self-organizing network processes. I can sit and talk about that for hours and hours. And I promise you that the conversation will be quite one-sided and self-focused. Most of my conversations have been and continue to be. As a result, I work well with others on projects in which I am interested, but I don’t socialize well.

  • Is it true that because I “cannot read social or emotional cues well, they come off as insensitive, pushy or strange, yet have very little insight into how they are perceived”?

I cannot tell you how many times I have been accused of being arrogant. Even when I am insisting we need to have humility in our ignorance. I have been told I am “insensitive” when I try to solve problems. I’ve been told more than once I seem “strange.” And my wife constantly reassures me that I have very little insight as to how I am perceived by others and that I cannot read social or emotional cues well.

  • Do I engage in “taking turns speaking, staying on a topic for a polite number of turns, and showing interest in someone else’s comments. People living with Asperger’s tend to talk at people instead of with them, and will often talk about their favorite topics long after the other person has become tired of the subject.”

I can definitely dominate a conversation. I have a tendency to interrupt when I have a thought. I stay on topics for a long, long time (or, if I’m not interested, not very long at all), and I have a hard time feigning interest. I do tend to talk at people instead of with them — I use language to communicate information rather than to create relationships — and I most definitely talk abut my favorite topics long after the other person has become tired of the subject. I am sure I am tiring even at conferences.

  • “Having a normal or higher IQ allows a person to learn and know, to push the envelope in intellectual ability, and to rejoice in the pursuit of some realm of knowledge, but there can also be negative effects. When someone is aware he is different, when, for all his intelligence, he cannot successfully make a friend, or get a date, or keep a job, he may end up far more prone to depression and despair than a person with a lower IQ. It has been found that children with both high-functioning autism and Asperger’s suffer from depression and anxiety more than their typical peers.”

I have always had a hard time making friends. I typically just “befriend” the friends of friends. I got by with my brother’s friends for a long time. I made exactly one friend during my Master’s in English, and I lost track of him immediately after we graduated. That was two years in Mississippi. I made one friend during my Ph.D., and was mostly friends with his friends. I got my first girlfriend when I was 25. I was, in fact, quite depressed for most of the 1990s because of these kinds of relationship problems. And I continue to have problems keeping a job.

  • Meltdowns.

I used to have meltdowns. When I was interrupted at a task, especially. When things just became too much. I have had two nervous breakdowns. But I have, over the years, learned how to deal with the stressors in my life. Yet, I do have to fight off blowing up when I am interrupted at my obsession/work.

  • Clumsiness.

I walked on my tiptoes as a child — something quite common in people with Asperger’s/autism. I was a disaster at trying to play any kind of sports. Teachers complained about my handwriting skills.
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There are other aspects to Asperger’s, which includes thinking style. Bottom-up thinking, analytical thinking, being able to see patterns extremely well, strongly visual thinking — are all typical of those with Asperger’s and autism. I am equally very bad at top-down and strategic thinking typical of neurotypicals. Strategic thinking is extremely exhausting, and I’m not very good at it.

I suppose it is entirely possible to have every trait of Asperger’s and not have it, to only be introverted. But you should probably bet on Asperger’s being the most likely diagnosis. And my own positive diagnosis certainly confirmed that bet, at least for me.