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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Autistic Masking

A recent trend I have seen on Twitter among autistics there involved opposition to “autistic masking.” Not all autistics can mask, but many if not most can. And that creates a number of problems for us.

I’m honestly a little torn on this issue, because on the one hand, I realize that literally everyone “masks”–you are a spouse, a parent, a friend, a child, an employee or employer, and there may be remarkably little overlap among those personas you present–and on the other hand, autistics both have to mask a lot more (like stimming), and masking is much more exhausting for us than it is for neurotypicals.

Over time, though, a lot of masking just becomes second nature. Sometimes you mask without even realizing it. For example, recently Daniel started engaging in palilalia. It was only recently that I realized palilalia was something I also did–only, I did it silently, in my head. I don’t see any particular benefit to my “unmasking” my palilalia. I’m still doing it–silently, in my head–and all it would do would be to cause unnecessary stress on others for me to do it out loud.

There are a lot of things people keep to themselves. People self-censor all the time. It’s called being polite. It’s called having good manners. You learn good manners. It’s not something anyone is born with. It’s a form of masking, and it’s a form of masking that makes you a better person over time.

However, the last century has seen a rise in what I would call the “cult of authenticity.” Everyone seems to think–or at least say they think–that people ought to be more “authentic,” that they need to be their “authentic selves.” I say that’s nonsense. I don’t want people to be their authentic selves. I want them to be better, nicer, kinder, more generous than their authentic selves–even if their authentic selves are good, nice, kind, and generous. The cult of authenticity has ruined art, poetry, relationships, and general civility. Rather than expecting everyone to rise up to greater heights, we want everyone to wallow in the shallows of their “authentic” selves.

At the same time, I can understand why many autistics are truly tired of masking. Masking is, for us, a great effort and, even when well-performed, prone to breaking down. Masking for neurotypicals is easy and relatively effortless. Masks can change in less than a moment. This is hardly the case for autistics. We have to always think about what it is that the person in front of us wants to see from us. And heaven help us if the situation changes and the mask has to change. Worse, we have to mask things that others don’t have to mask. Neurotypicals are sincerely interested in other people and stories about others people, while very often we autistics aren’t. But we know it’s important to others to talk about those thing, so we feign interest. Also, if we are allowing a lot of back-and-forth in conversation, you may rest assured that it’s only because we are artificially cutting ourselves off despite having so much more to say. This, too, is a form of masking.

I suppose the real problem with masking is that while presumably neurotypicals do get times when they can be their “authentic selves” around certain people, we too often feel like we can never be ourselves–even around friends and family. When can I stim without feeling self-conscious about it? (Of course, I also rarely stim when I’m fully comfortable, so I suppose wanting both is contradictory in nature, at least for me.) When can I just talk and talk and talk about what interests me? I pretty much never get that opportunity, and I find myself less and less able to have conversations about my interests that go on for as long as I want them to go on (ah, the beauty of grad school in allowing such conversations!).

I often put up with people touching my wrists (which makes me want to crawl out of my skin), and I have to wear suits and long-sleeve shirts (remember my wrists?) in certain situations. I’ve had to get over being interrupted when I work so that I’m not biting people’s heads off. Even then, I really haven’t “gotten over” the intense irritation I get at being interrupted when I’m working on something, especially my writing. Rather, I mask it, taking a moment to calmly move out of the zone and into a space where I can converse. But let me ask you: should I have just kept biting people’s heads off, or should I have masked that reaction? I think we should probably all agree on the answer to that.

Living in the world means masking. This is true for all people. However, it’s harder for us autistics. And we’re rarely if ever given the opportunity to truly be ourselves. Which only makes it harder. Which is no doubt why there is this movement against masking. We have been pressured into always-masking (and always doing so poorly), and many have gotten sick and tired of it. The answer, for them, is to demand from everyone that we be allowed to never mask anymore. I think there are rhetorical benefits to that approach insofar as it draws attention to what we have to do to get along (and even then, not enough)–especially if it can draw attention to the fact that masking, because it’s so hard for us, actually harms us not only through mental exhaustion, but from people reacting so poorly to when the mask starts to crack. We need people to realize what we’re doing and how it can harm us. But, truth be told, we’ll never be able to stop masking. It’s simply part of being human.

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.

Autistics Helping Autistics

Medical Express has a piece on an autistic man, Kyle Barton, who lives in the Plano area and who attended UTD who has had a hard time finding a job. The title of the piece is Man with Autism Helps Design Virtual World to Make Life Better for Adults like Him. The entire thing is well worth reading, and I don’t want to summarize it. The article not only discusses his project, but goes into the struggles he’s had finding a job.

I certainly understand that struggle. Barton certainly should not be unemployed. He is a graduate of UT-Dallas and, very obviously, very intelligent. And yet, he’s struggled to find work. I have a Ph.D. from UT-Dallas, and yet the only work I’ve managed to get have been adjunct professor jobs, and temporary and part time work. I’m incredibly thankful I now have a full time job, but it’s as a paraprofessional (don’t get me wrong, I love the work I’ll be doing, but I should be making far more given my education and abilities).

While I do hope that Barton’s work will help many autistics navigate the world better and, hopefully, find and keep work, there’s a certain absurdity to someone like him or me having trouble finding employment. We seem to mostly be guilty of being socially awkward, spending too much time working at work, being too creative, and treating too many people as equals. The fact is that most people are completely intolerant of any real differences in thinking and behavior and only tolerate superficial differences.

 

Time to Write

While I was doing pretty good keeping up with this blog since I started it, the fact of the matter is that I have been writing less and less and less recently. The reason isn’t that I don’t want to write nearly as much. Quite the contrary. The reason is that I’ve been very busy teaching of late.

I have been working as a substitute teacher this past school year. Through most of the year, I was subbing at high schools, about half in regular classes and half in special education classes. This was very low-demand overall for me. I could mostly sit and read, sit and write, and if I wrote anything that I could use for this blog, I’d transcribe it later.

However, since February, I have been working exclusively at a school in their BSC as an emergency sub. Becoming essentially a full time faculty member really changed the dynamics such that it became more difficult to work on things like my book or my blog. I have gotten some reading done, and I have written a few poems, but those were about the only things I could really work on given the time demands during the day.

Of course, when I get home, I have my wife and three children, with whom I get to spend some time between making dinner and doing freelance writing work. I have tried to do more and more freelance writing work precisely because of the difficulties I have had getting a full time job. At the same time, I am hoping my success will result in something full time there.

In any case, the summer is almost upon us, meaning summer break. For a sub, bad for the checkbook, but more time at least. I’ll be spending as much of my time as possible doing freelance writing work, of course, but I am also hopeful that I will be able to return to my novel and, of course, this blog on a more regular basis.

On Anxiety

If you are anywhere at all on the autism spectrum, you have anxiety. It seems to come with the territory. It’s easy to find things about which to be anxious, but in truth the feeling seems to just be there, as background noise, never ceasing.

At the same time, there are plenty of things that give us anxiety. Facing new social situations is an obvious one. While we may be standing off to the side, sitting there quietly, seeming to only be listening, perhaps appearing aloof or even arrogant, the fact of the matter is that the situation makes us anxious, and it may take us a while to get used enough to the situation to come out of our shells. That probably won’t happen at the end of a party, but it might happen at the end of a week-long academic conference.

One thing that causes us anxiety is not working on our project, whatever that project may be. Most of the time, we are our work, and that means when we are working on a project, we almost don’t know what to do with ourselves when we are not working on it. When I am working on a project–whether it’s a novel, a poem, a play, a paper, a nonfiction book, or some other project–I am always thinking about that project. I am anxious when I am not working on my project. When I am working on it, I am anxious to finish it. It drives me, but it also drives me a little crazy. I seem to be absent-minded, but I’m always thinking about my project. It never ends, until the project is over.

And then I start on the next project, and the cycle of anxiety starts all over again.

Even now, as I am writing this, Daniel is full of anxiety because he has a project he wants to do, but he can’t get his younger brother to cooperate with him (or, more honestly, obey him and do everything he says–something that makes Dylan’s supreme independence a perfect foil for Daniel). Because he is anxious and frustrated, he yelled at his mom, which caused me to have to stop and make him apologize to her.

These frustrations/anxieties are part of our daily experience in dealing with other people and the the world in general that constantly imposes on us and prevents us from working on our projects, which is really all we want to do. Daniel is going to have to learn that you can do more with honey than vinegar, or he’s going to just stop trying to involve anyone and do work that doesn’t involve anyone else to get it one.

You know, like writing.

So there are certainly many things that make us feel anxious. The fact that we identify with our work, and not working on our work makes us feel anxious to work is part of it, but it’s hardly all. Sometimes, you just feel anxious. And it may not be caused by anything in particular. The fact is that most of the time, we simply feel anxious because we feel anxious. We can look for causes, but how often will that be simple justification of the feelings? The fact of the matter is, anxiety is co-morbid with autism. Sometimes it just is. It is the background noise of the world when you are autistic.

Meltdowns

Daniel is 8 and he hasn’t had a meltdown in probably 3 years. That doesn’t mean he doesn’t get frustrated–or loud–but he has it under control, and I can immediately redirect him. Daniel being verbal helps, though he wasn’t verbal until he was about 3.5 yrs old.

While Daniel is able to avoid having meltdowns, there are children out there who are no more autistic than Daniel who are still having meltdowns in their teens. It’s one thing if the child is so severe that they cannot speak and otherwise have extreme difficulty communicating–the frustration of trying to communicate and having your body refuse to cooperate is without question extremely frustrating. But there’s honestly no excuse for someone who is verbal to be having constant meltdowns (which isn’t to say that we won’t have our very, very bad days).

There are several things we did with Daniel that resulted in him no longer having meltdowns. One thing we would do was hold him until he calmed down. We would also repeat his name and try to sooth him by encouraging him to tell us what happened. Afterwards, we would talk to him about what frustrated him and ask him if his reaction seemed reasonable given the situation. He always agreed it wasn’t.

We also told him that if he felt a meltdown coming on, to squeeze our hands or to count down with us from ten. We introduced these at the same time that he was agreeing the causes of meltdowns were unreasonable.

The bottom line is that we always held Daniel accountable for everything he did, even during a meltdown. We made him apologize to anyone he may have harmed during the meltdown and clean up any mess he made. We helped him communicate rather then have a meltdown, and helped him to reason through his frustrations. Autistics can be reasoned with–perhaps more so than non-autistics–and so if you’re using reason with them, their meltdowns should becoming less and less intense and coming on less and less often.

What cannot be done is to accidentally reward them for having meltdowns. Never give in. Never avoid what may lead to a meltdown, as they will learn that having a meltdown will get them out of uncomfortable situations (or simply situations they don’t want to be in). Make them talk about it (if they’re verbal, of course). While it’s true that once you’ve crossed over a certain point, the person is no longer entirely in control of what they’re doing, since the world has become extremely chaotic and confusing, the fact of the matter is that autistics are in fact in control of themselves up to the moment they have their meltdown. If that weren’t the case, it wouldn’t be possible to reduce the number and intensity of meltdowns through reason and various calming techniques.

It has been my experience that older children especially will actually use meltdowns to get themselves out of things they don’t want to do–such as go to the store, stay home, apologize to someone, go to class, or even be around someone in particular. If you give in because they have a meltdown, that will tell them that meltdowns will get them what they want. While I do not think you should punish a child who has had a meltdown the same way you would punish a child who threw a temper tantrum (since they are hardly the same thing), there should still be consequences for the meltdown, as already mentioned–apologies, cleaning up the mess, etc.

Too often we find ourselves tempted to offer the “autism excuse” to justify ongoing meltdowns or other behaviors. Somehow excuses are only offered for the most problematic behaviors that we can in fact learn to control, while we are held responsible for “minor” things that are in fact more emblematic of autism and less under our control. When that happens, we mostly end up being pitied rather than taken seriously. We aren’t given accommodations for reasonable things and given excuses for the most outrageous ones. This benefits no one–especially not us.