LGBTQ and Autism

I keep coming across this connection between autism and an increased likelihood of being LGBTQ, but I haven’t written about it until now because, well, it hasn’t been personalized yet. My wife has a gay best friend–they have been friends since they were 14–but he’s not autistic. I always figured that homosexuality didn’t bother me in the least because I was so secure in my own heterosexuality. Which, again, points to why I haven’t really written about this issue. With a few exceptions, such as here.

Yet, it would be a dereliction of my duty as a blogger of all things autism if I were to leave it aside. Thus, I refer you to this article: Dual Spectrums. It’s worth a read, because it discusses the very high correlation between autism and fluid gender and sexuality.

I believe that one of the traits of autism involves a failure to “see”hierarchies and boundaries in the world. For the same reasons I tend to treat the CEO and the custodian the same and for the same reasons I’m a polymath, there are those for whom the boundaries of gender and/or sexuality have dissolved. I have argued that autistics tend not to be racist, and this tendency is also related, I think.

It also may simply be that we are oblivious to social pressures and are thus free to be ourselves, more or less.

Of course, we are looking for a single reason, we’re almost certainly going to be wrong.

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Adult Diagnosis: Now What?

Once I diagnosed myself with autism, I wanted a formal diagnosis. Many people have wondered why you would want a diagnosis when you’re already an adult.

I can only speak for myself. I have my Ph.D. in the humanities, so I have read a great many philosophers (I read a great many philosophers prior to getting my degree, which was among the reasons I wanted a Ph.D. in the humanities), and if there is a common thread among the philosophers, it is that you need to get to know yourself. To “know yourself”–as written at the Temple of Apollo at Delphi (home of the Oracle at Delphi)–you have to think long and hard about yourself and your place in the world. I add to this having contemporary biological, evolutionary, psychological, neurological, and sociological knowledge about yourself as well. So to me, knowing whether or not I was autistic would allow me to better know myself.

Using the knowledge to better understand oneself means that you use that knowledge to better oneself, to understand one’s place in society, to clarify your past actions. It doesn’t mean you’ll suddenly be able to “fix” yourself; rather, it means you’ll have greater clarity about who you are and why you do the things you do.

That, I think, is what people ought to do with an adult diagnosis. But I know for a fact that that’s not always what happens. I know of someone who suspected her husband was on the spectrum. She started sharing information about Asperger’s with him, and he became convinced he was autistic. As a result, he started using it as an excuse for everything, to excuse everything he did. They ended up getting a divorce.

Too many people cannot seem to tell the difference between having a reason for something and having an excuse for something. Autism is a reason I may fail to notice you trying to greet me in a public place, but it’s no excuse to be rude. Knowing that my autism may make me less attentive to people immediately in front of me, I can make more of an effort to focus on whoever may be closer by, which will make it more likely I will notice when someone is trying to greet me.

There are of course other things I cannot help, such as my short term memory amnesia. Knowing about that won’t help me, but it most certainly does help others understand why it is that I can remember volumes of information while being simultaneously unable to remember your name right after you told it to me. Throughout the years I have been with my wife, I have told her that if she wants me to do something or get more than three items from the store, she will need to write it down. She thought that was ridiculous given how prodigious my long term memory is. When she heard the doctor diagnose me with short term amnesia, though, she finally understood what I had been telling her all these years was true. Now I get lists.

My diagnosis has, I believe, strengthened my marriage somewhat by my wife having a better understanding of some of the things I do and say (and don’t do and don’t say). I’m sure some of it is still annoying, but at least there’s some understanding there of it. And if something gets to annoying, I really do try to change what I’m doing, etc.

I also believe my diagnosis has helped me with my scholarship. I have published several peer reviewed articles on spontaneous order theory–a theory of economics and sociology–and I assumed like everyone else that people were fundamentally the same in their thinking, with slight variations in IQ or between men and women. However, I now know that not to be the case at all. The idea of neurodiversity suggests a much more complex system, a more deeply heterogeneous social system, than most people realize. This neurodiversity is what makes human society so dynamic and creative. The lack of it in other social species it what keeps them relatively stagnant in comparison.

My diagnosis, then, has had a significant impact on the way I think of myself and on the way I think about social issues. When you begin to realize that so many important people in the past and present were on the autism spectrum, and that autism is over-represented among creative people, you start thinking about creativity and social evolution quite differently. You also think about the importance of autism in society differently.

I’m not sure I would have written this blog if only my son were diagnosed with autism. I do not think I would have obsessively learned all I have learned about autism without my being autistic myself, so I certainly wouldn’t have had the depth and breadth of topics as I have had here.

In any case, I’m glad I was diagnosed. I suspect it has weakened some relationships from people who are likely sick of hearing me talk about autism all the time. I also suspect those people miss my talking about topics they found interesting. But it has also strengthened a few relationships. I know myself much better than I did before, and I think I understand the world a little better as well. Which is probably no coincidence. Know yourself, know the world.

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.

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.

Yes, I AM an Autistic Person

Am I a person with autism or an autistic person?

The latter identifies the person with disability; the former is “person first,” and suggests that the person and the disability is different.

If we are talking about a paraplegic or someone who lost an arm, person-first language would make sense. However, I am not a person with autism. That is, if you could “take away” my autism, there would not be a “Troy Camplin” left that in any way would resemble who I am. Autism is a brain structure difference, and that difference results in a particular way of thinking, behaving, acting, interacting, etc., and affects personality.

That is, I am utterly indefinable outside of the autistic structure of my nervous system. The same is true of my son, Daniel. He would not be him, with all his wonderful capabilities and occasional frustrations and difficulties, aside from the autism. Daniel is an autistic person. So am I. We are not people with autism, as though the autism could be taken away and we would remain the same (absent a few communication difficulties). No, we are autistic people. Quite different in our thinking, behaviors, interactions, etc.

This is different from saying I am a person with dark brown hair (or, increasingly, without much hair). The color of my hair does not affect my personality. I am a person with hazel eyes. I am a person with slightly low blood sugar. I am certainly a person with a large number of traits that have nothing to do with my personality, behaviors, thinking, actions, etc. Skin color, nationality, ethnicity, etc have no effect on my morals, behaviors, interactions, etc. But my being autistic does.

The thing with the “person first” language is that it participates in the medicalization of autism. If a person has cancer, you would definitely say they are a person with cancer and not call them a cancerous person (talk about a difference in meaning!); it’s a person with diabetes, not a diabetic person; it’s a person with psoriasis, not a psoriatic person. Things that can be potentially cured, treated, or truly controlled are things appropriately medicalized, as they are diseases of different kinds.

But I am not a disease. I don’t have a disease. And I really don’t have a disability, except from a purely neurotypical-centric world view. Nobody would consider me disabled because I’m left-handed in a right-handed dominant world. Many things are designed exclusively for a right-handed world, making many things difficult for those of us who are left-handed. But do those difficulties make us disabled? Of course not. We adjust. We sometimes find left-handed utensils. Sometimes people adjust to us (letting us sit with our left elbow away from everyone at the dinner table, for example). But we’re hardly disabled on account of it.

And the same is true of being on the autism spectrum. I adjust to the neurotypical world. I try to find autism-friendly social situations when possible. And sometimes neurotypical people need to adjust to us. Failing to do so is simply selfish and rude. Especially if we tell you that we are on the spectrum and explain our communication differences. If we do that and you call those things “excuses” and refuse to adjust your expectations, that makes you the asshole, not us. We don’t mean to be rude, even if we sometimes do things that can be interpreted by neurotypicals as rude; but when we apologize and explain ourselves, the decent thing to do is to accept our apology and to try to understand the communication breakdown with us.

To say someone is a person with something is to say that they remain the same whether they are with the thing or not. I am the same person whether or not I am with my computer, whether or not I am with my cup of coffee; even whether or not I am with my wife and children. I’m a man with a wife and children, not a wife and child person. But I am most certainly an autistic person. It is part of my state of being. My very existence is unthinkable in its absence.