Sharing a Co-Morbidity Doesn’t Mean Autism Doesn’t Exist

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My wife shared this image on Facebook. The things surrounding “autism” are all things that can be co-morbid with it. For example, I have general anxiety disorder–meaning I have anxiety all day every day–but I don’t have Tourette’s. Not everyone who has general anxiety disorder has autism, of course, but if you are autistic, you have general anxiety disorder. And not everyone with Tourette’s is autistic, but a higher percentage of autistics have Tourette’s.
 
There are those who think that having daily rituals is having OCD. Having rituals is not really quite OCD. Rituals are a way to create order in life, and is therefore something you will find autistics doing at much higher rates than, again, the non-autistic population. True OCD would involve someone who cannot leave a room without turning the light switch on and off exactly 15 times each time, or who gets “fascinated” by a shoe for 30 minutes straight. Or it may involve being unable to stop thinking about something all the time–such as sharks, for example, or in my case, self-organizing scale free network processes. The benefit of having what one could call “OCD thinking” is that one can become a scientists or scholar, and then you’re actually paid for what you can’t stop thinking about. You can get a Ph.D. with that way of thinking.
 
Of course, if you’re always thinking about certain things, if your brain is always running at 150 mph, you may have a hard time paying attention. My own hyperactivity is mostly in my thoughts, but Daniel has a hard time sitting still unless he’s involved in his obsessions. Which simply means his hyperactivity is internalized.
 
These things themselves come from the fact that the autistic brain is dominated by positive feedback. Complex systems like the brain have a combination of positive and negative feedback. Negative feedback helps to keep things in equilibrium. The thermostat for your heater/AC uses negative feedback to keep the temperature the same. If you had a positive feedback thermostat, the hotter the room became, the hotter the heater would try to make the room. Things go faster the faster they go. Hyperactivity then occurs because you’re getting overstimulated. This can then push over into a situation where you become overwhelmed by the situation. Reactions to this can include extreme escape behaviors, banging your body against a wall while becoming non-responsive, or having an outright meltdown where you cannot control your actions. The overstimulation occurs in no small part because we also have sensory integration disorder. That means we have a hard time separating out visual input from sound from touch from all of the rest of our sensory input. I experience it as a feeling that my mind is being crumpled up like a piece of paper and everything goes black.
 
I also come with some extreme sensitivities. I cannot stand to have my wrists touched. I jump every time someone does that. I want to remove my skin to get away. But I try to downplay my reactions because people will just think it’s “weird.”
 
Autism is a fundamental structural difference in the way the brain is wired and works. It results in a very distinct set of behaviors. Yet, it is a spectrum, and that spectrum goes from truly debilitating (what is now called Autism 3) through “high-functioning” (Autism 2) to Asperger’s/Autism 1 and, I would argue, ADD/ADHD. Yes, most of the elements which are often co-morbid with autism can be found elsewhere. I have a slight tendency toward manic-depression, but there are certainly people with manic-depression who aren’t autistic, and there are people with crippling depression who aren’t autistic. Yet, those are found among autistics at much higher rates.
 
Those who like to throw around the argument that “autism” is a “mere label” are really just trying to downplay some very concrete elements of reality. There are some things that are “mere labels,” and some things that absolutely are not. Having structural and biochemical differences in my brain that result in my mind being very different from non-autistic people isn’t a label. It’s an acknowledgement of that reality. I’ve enjoyed the giftedness and even the OCD that has come with it. I couldn’t have gotten my Ph.D. without it. And yet, my sensitivities and “weird” behaviors have definitely affected various aspects of my life. One of the best things to have happened to me was for me to realize I was autistic and to get officially diagnosed. It cleared up why I was argumentative (have ODD), why I couldn’t understand why everyone else wasn’t as rational or couldn’t see all the complex patterns I could see. It cleared up why I have all my sensitivities, why I think the way I do, why I avoid being in the middle of large groups of people, why I have blackout and movement seizures, why I have a delay in my response to people, and why I can get confused if people don’t give me the processing time I need.
 
The benefit of knowing I am autistic goes beyond that. Now I’m no longer just that weird person who doesn’t like to socialize who inexplicably alternates between being wonderfully kind and friendly to appearing to be rude (from failing to notice things going on or being confused about a given situation). Those behaviors are now able to be explained. Which doesn’t mean I shouldn’t have someone say, “Hey, so and so said hi to you.” I do. It helps. Nor does it mean I shouldn’t have certain behaviors pointed out to me, because when they are, I become more conscious of them and the fact that they may make non-autistic people uncomfortable, so I should try to change that behavior. At the same time, there’s always a degree to which we cannot help our behaviors. In a room full of autistic people like me, the non-autistics would stand out and it would be their behavior which would seem out of place. And if we insisted they fit in, they would seem socially awkward and would have an extremely difficult time fitting in.
 
The long and short of it is that autism is a real thing with real behavioral and cognitive differences in those of us who have it. It’s important people know Daniel is autistic. That way people can understand that if he’s in a situation with a lot of people where he’s being completely overwhelmed that he’s not an out-of-control brat who just need some strong discipline to straighten him up, but actually cannot integrate what is going on, positive feedback is dominating, and he’s so completely overwhelmed he shuts down until he resets (in a closed system like the brain, positive feedback doesn’t run away forever, but rather creates cycles). I want people to understand that. I want people to adjust their expectation and to make room for “odd” behaviors so they can reap the benefits of our existence.
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New Social Environments Are Exhausting

This past week I have had trainings for my work. I have been hired as a paraprofessional in a middle school behavioral unit in Plano ISD, and that means I had to go through four days of training. I have been utterly exhausted for four days.

I have had to be in a room with about 30 strangers for four days. On day one, I’m not sure I could have stimmed more or faster. My legs shook and I was fiddling around with my pen. I stimmed less each day, but I didn’t seem to get any less exhausted. I fortunately didn’t have training today, so I was able to sleep in (not to mention going to be a little early)—I got 10 hours of sleep (I usually wake up naturally right before I get 8 unless I’m that exhausted).

My wife noted that I seem to get exhausted that way if I have a day full of meetings. I also get this way the first week or two of a new job. One can only imagine what impression that makes. After that first week or so, though, my brain adjusts to the new situation, and I am back to my old normal self and degree of energy.

Given that this is what a new situation does to me, one can also perhaps imagine why I may not want to participate in these kinds of meetings or trainings, why I may not want to start a new job or switch jobs, or why I may want to avoid situations in where there will be a large number of people I don’t know and with whom I have to interact. I can only imagine what I must look like to others.

Coincidentally, having this level of self-awareness only makes things worse in these situations, because it only makes me more anxious, which only makes me stim more and harder. It’s a positive feedback nightmare. And when your brain is running at full blast for hours on end, it’s exhausting.

More Support for the Intense World Theory; Or, Why We Hear Better Than You

We may start looking at auditory signs of autism based on two recent discoveries. One is that autistic people hear more sounds than do neurotypical people. The other is that the reason for this is that inhibitory pathways in the brain are weaker in autistic people.

Readers of this blog will not find the latter to be the least bit surprising. Weak inhibitory neurons would of course create more intense experiences of sensory input since inhibitory neurons dampen out information. They quiet things down, so to speak.

With weak inhibitory neurons, the excitatory neurons are necessarily going to dominate. This creates positive feedback, which makes for a more intense experience of one’s senses.

The first article also contributes to the increasing number of sources touting the positive aspects of autism. They point out that autistic people often do better than neurotypical people on visual and/or auditory tasks, spotting more continuity errors in videos and being more likely to have perfect pitch. I have little doubt that my high-level skills in proofreading have everything to do with my autism. Taking in an processing more information has its advantages.

Unfortunately, that “more information” doesn’t seem to include human faces.

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?

 

Food

I don’t think I’ve ever met anyone with an autistic child whose child wasn’t picky when it comes to food. In that sense, we’re somewhat lucky in that Daniel isn’t all that picky. In fact, our 11 -year-old daughter is the pickiest one. It’s for her that we have to often make “other meals” than the main one.

That being said, there are two people in this household who are gluten-free, and it’s the two who have been diagnosed ASD–Daniel and me. We are gluten-free because anything with wheat in it causes us to get severe stomach aches, and has more than once caused Daniel to throw up (usually, it’s a combination of birthday cake and driving home from the birthday party). Daniel won’t even ask for cake anyplace else any more.

There’s also some Type-2 diabetes in the house, so there’s an increasing avoidance of anything with carbs.

But we can’t just get rid of carbs, because our daughter won’t eat anything except bread, tortillas, spaghetti, butter, cheese, milk, cereal, bacon, fried eggs, or pepperoni pizza (how is the taste of everything else too strong, but not pepperonis, which she’ll eat plain?). If we got rid of carbs, she’d starve.

To round things out, Dylan will at least eat almost anything.

Most of my pickiness comes out of certain textures being “wrong.” And Daniel seems to go back and forth on some things, like fried eggs. I made him over-easy eggs, but he wouldn’t eat the yolks. So I started making him fried egg whites. Then he said he didn’t want, “baby eggs,” meaning he wanted yolks. He ate over-easy eggs with yolks for a few weeks, but this past weekend he ate only the whites again. My guess is he’s torn between the slimy yolk texture and the desire to not be eating “baby eggs.”

I also have to make two batches of chili, one with all the vegetables, one with just meat and beans. Melina won’t eat any chili, of course, but the boys will. And the boys will eat things that are hot and spicy, but complain if there are too many things like onions, chunks of peppers, or spinach/chard. Of course, part of this is simply that children simply refuse to eat their vegetables.

Our pickiest eater, though, is one who hasn’t been diagnosed with autism. She does have the pickiness and the clothes sensitivities (and fashion sense) that typically comes with autism, though. At least she doesn’t have the wheat allergy, though, or I don’t know what that girl would eat. As it is, with pickiness, gluten-free, and diabetes (and I have slightly low blood sugar, so I have to have carbs), I’m practically a short order cook when it comes to dinner. Doesn’t everyone make 3-4 different meals at dinner time?

Taste and Texture

Have you ever noticed that spaghetti and fettuccine taste different? Probably not. Unless, that is, you’re on the autism spectrum, in which case it’s not impossible that the differences in texture between spaghetti and fettuccine result in the experience of different flavors for those two otherwise completely identical foods. The result is that I love spaghetti with meat sauce, and I love fettuccine alfredo, but cannot stand spaghetti alfredo or fettuccine with meat sauce. They’re wrong.

Also, scrambled eggs are terrible, but boiled eggs or over-easy eggs are great. Texture makes all the difference among those ways of preparing eggs.

Cooked peas are terrible–nasty squishy, poppy things. But peas in pea salad are fine. The texture gets improved with the boiled eggs and diced pickles. (My wife replaces the pickles with cheese, which is also texturally wrong, but tolerable.)

If you have a child (or significant other) who seems to be oddly picky about things that shouldn’t matter–“How can you like macaroni and cheese with elbow noodles, but not with spirals!”–the reason is almost certainly texture issues. The textures of foods matter as much as the textures of clothing on our skin. And you may not be able to tell any difference, but we most certainly can.

Keeping Up Appearances

I’ve read that autistics tend to not care about their appearance. I did. In a certain sense. In elementary school, I always made sure my hair was perfect. I would wake up–on my own–at 5:30 to take a shower every morning. I had to wear dress shoes because only those were all-leather and fitted with a Thomas heel, which was necessary because of my feet and hip problems, but I did not have to wear the dress slacks and button-down shirts I wore literally every day everywhere, including to school. That’s why I said, “In a certain sense.” After all, as you can perhaps well imagine, my classmates all thought I dressed ridiculously, and they made fun of me over it. Even my closest friend encouraged me quite often to wear jeans.

When I started high school in the mid-80s, I started wearing jeans. Acid-washed jeans, but not regular jeans, and certainly not any with holes in them (as was the other trend of the time). I did not change that look until I started trying to dress in a sort of “grunge fashion,” which I got all kinds of wrong by wearing regular button-down shirts (as opposed to flannels) unbuttoned over t-shirts. Now I mostly just try to be comfortable, wearing shorts when I can and t-shirts. I avoid long-sleeve shirts because I cannot stand for anything to touch my wrists.

I wonder to what degree autistics “don’t care” about their appearance vs. caring but being unaware of how their appearance looks to others. Perhaps people mean autistics are less likely to brush their hair or perhaps even their teeth. But has it occurred to anyone that someone who is sensitive to touch may find brushing their hair to be an activity that actually causes pain? Has it occurred to anyone that mint might be such an overwhelming flavor and feeling to someone who is autistic that they would avoid brushing their teeth? Given there are few non-mint toothpaste flavors out there (almost all for children, especially after the lemon and orange flavors disappeared from the shelves), and given the “hot” flavor of cinnamon toothpaste likely being a turnoff for many autistics, is it surprising there are autistics who avoid brushing their teeth?

So this issue is a more complex one than neurotypicals realize. As with many things, “not caring” is perhaps a neurotypical projection of neurotypical motivations onto autistic behaviors. That is, they look at an autistic person who is dressed a certain way or doesn’t brush their hair or doesn’t brush their teeth or doesn’t wear deodorant, and thinks, “Well, if I did/didn’t do those things, it would be because I didn’t care.” But that’s simply not true. It’s no more true than if an autistic were to say, “That person has nothing they are completely and totally obsessed about? Why, they must not care about anything at all!” (But that is what we autistics secretly think about all you neurotypicals! 😉 )