Sunday, July 31, 2016

Don't Be Rude

"Why didn't you do X?"

"Because Y."

"I don't want to hear your excuses."

"Well, you asked the question."

"Don't be rude!"

To an autistic person, the first question is a direct question, to be taken literally and to be answered literally. The answer isn't an excuse; it is an explanation. So when you get mad at the answer, the autistic person doesn't understand why you're mad and will respond that you're the one who asked the damn question in the first place, so why the hell are you mad about the answer? And that observation is not at all meant to be rude. It's an observation.

Something I have never understood (and I'm writing this on this blog because of the very distinct possibility that my inability to understand it is a consequence of my autism) is why people cannot tell the difference between an excuse and an explanation. More, I don't understand why people get mad at your answer when I am pretty sure they know what your answer will be. Why even ask the question. To me, asking the question makes you the rude asshole. Just get to the point. Say what you want to say and stop playing games designed to justify your yelling at me.

Many of the things we on the spectrum say sound rude to those who are not on the spectrum, but the same is true for us: neurotypical people sound rude all the time to us, when what you're saying is clearly understood by everyone.

Saturday, July 30, 2016

Autism is a Pervasive Developmental Disorder

Those familiar with autism are perhaps also familiar with the designation PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified), but I don't think many understand that autism is itself a PDD.

I can provide some very specific examples of the degree to which autism is both pervasive and a developmental disorder.

Most people associate autism with being a communication/social disorder, but the fact of the matter is that it very often affects the body itself in a variety of ways. The fact that autism is a different form of neural construction and information processing should make us not all that surprised that other parts of the body are affected. The gut, for example, is often strongly affected in many of us on the spectrum. My son and I both have gut problems. As I have written about before, our apparent glutamate-glutamine imbalance results in leaky gut, which results in an immune response to gluten. Taking daily glutamine has helped us both. The leaky gut is an aspect of our autism, but it is at least treatable with glutamine supplements.

But there are other factors at play. I have come to understand autism as potentially neotenous, meaning the retention of infant traits while still continuing to develop into a sexually mature adult. In my case, that has meant developmentally underdeveloped heels and arches, meaning I have considerable physical pain in my feet. I also have twisted femurs such that my hip joints rub, also causing pain (especially if a strong low pressure system comes in), which may be related to the DPP since it is in fact a developmental problem.

I've also never been particularly coordinated. I'm not outright clumsy, but I'm nowhere near being able to be an athlete, and I never have been. Daniel is much the same way. Poor coordination is a common element among those on the autism spectrum, and it's part of the PDD aspect of it.

Feet pain, hips pain, gut pain -- all seem part and parcel of my own autism. So in my case not only do I have to deal with communication breakdowns and various misunderstandings, but a considerable amount of physical pain and diet restrictions as well. All just part of the fun of being on the spectrum.

Friday, July 29, 2016

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.

Saturday, July 23, 2016

A Literature of Autism for Empathy-Creation

On my main blog, Interdisciplinary World, I wrote about a CNN article that discusses some of the more recent work that has been done on the connection between fiction and empathy-creation. This connection suggests several things to me regarding the gulf between autistic and neurotypical people.

One of these is perhaps very obvious, which is that autistic people need to read more fiction, and neurotypical people need to read/view more fiction with autistic characters. What is perhaps less obvious is that autistic people don't actually seem to read much fiction or be all that interested in it (perhaps because too many works of fiction do not have many characters to which they can connect). Further, there is probably not a lot of fiction out there with explicitly autistic characters.

This means that autistic people cannot create the anchor needed to become interested in fiction and thus be exposed to other minds than theirs, and neurotypical people cannot delve into the fictional minds of autistic characters to develop empathy for them.

Meaning, we need a literature of autism. Or, at the very least, a reading list of autistic authors and fiction with autistic characters. Anyone care to contribute to creating that list?

Saturday, July 16, 2016

A Pathological Look at Neurotypical Behavior

            When you read about autism, you typically read about it as a pathology. Autistic people are viewed as being normal people with pathological deviations from the norm. Every so often you will come across an article that delineates a few of the special abilities of people on the spectrum, but even in doing so, it comes across as “well, at least there are a few positive things that come out of this tragedy.”

            Autism is a structural variation in the brain’s architecture that gives rise to differences in processing and in different abilities. One may even argue that it gives rise to a different kind of mind. The vast majority of those people are in the “mild” end of the spectrum, though a great deal of focus is on the “extreme” end, with those who often cannot speak and seem to be particularly mentally disabled. This focus further pathologizes the spectrum precisely because it does not fully or even properly represent the reality for most people with autism.

            To fully understand my point, I want to treat those not on the spectrum as though autism were the norm and what we now call neurotypical behavior were the minority. That is, I want to treat neurotypical people the way they treat people on the autism spectrum, from the perspective of someone on the spectrum. Because, from our point of view, you are full of deficits.

The Pathology

            Irrational behaviors are one of the primary aspects of neurotypical people. Very often decisions are made without a great deal of thought or, certainly, research. This is especially true of their opinions. Whereas a sensible autistic person will do a great deal of research before developing an opinion or coming up with a proposed solution, neurotypicals have been observed to have an immediate opinion on things without, apparently, knowing the first thing about the topic. This is different from the kinds of errors autistics made from managing to miss something in their extensive research; rather, the neurotypicals carelessly won’t do any research at all before making a decision. And if they do any research, it will be at best a truncated version, as if they are impatient to come up with any answer at all rather than to make sure they have the right one.

            It seems that a strong reliance on emotions is a typical reason for this immediate, almost knee-jerk, way of making a decision. As a result, it is not uncommon for them to agree with a solution that sounds good, sometimes regardless of the overwhelming evidence against the proposal, rather than something that has a track record of actually working. This seems to especially be the case in the areas of economics, the social sciences, and government. While this same tendency does allow them to respond more quickly to others, sometimes that is done at the expense of properly assessing the social situation. Fortunately, they do seem to have a particularly strong ability to make that proper assessment, so we must admit that in this particular case their pathological tendency toward immediate conclusions is often beneficial.

            Having said that, there are some very strong negatives of that ability that seem to be combined with a kind of empathy that makes them more likely to identify more with people like themselves than with different people. While we autistics have a tendency to not be judgmental or biased, neurotypicals are terribly judgmental and biased. They judge people on things like race, sex, gender, deviations from the way they themselves think, culture, religion, and pretty much any difference one could possibly imagine, often to the point of hating members of other groups. Some autistics who have been raised with these people have learned these behaviors themselves, even though they are not typical to us. This makes associating with neurotypicals potentially dangerous, unless we remain on our guard against their biases.

            This note on this particular moral deficit brings me to the topic of the large number of moral deficits commonly associated with neurotypicals. They have an under-developed sense of loyalty, and many do not seem to show any degree of loyalty at all. Further, they seem willing to lie about just about everything. The primary use of language for them seems to be to lie to each other. They will tell each other they look nice when they don’t; they will say one thing to one person, and another to another; they will backstab; they will tell their friends they are right when they know their friends are wrong. I could go on and on with the ways they lie to everyone. They will also exaggerate and say things they don’t really mean. They will sometimes use words to mean completely different things. For example, I recently heard one of them say, “Give me a smack.” Which seems an odd request. But then I saw their neurotypical partner give them a kiss in response. How strange to ask for the opposite of a kiss and then to get a kiss! As a result, it can be very frustrating to deal with neurotypicals. You never know if they really mean what they are saying, you do not know if you can ever really trust them, and if you make the mistake of thinking they think the way you think, you will too often find yourself screwed over without your understanding what just happened.

            Another odd behavior neurotypicals exhibit is their habit of “small talk.” From what we can tell, small talk appears to be talking just for the sake of talking. A “how are you doing” results in the same non-answer of “fine.” It seems unlikely everyone everywhere at all times is truly “fine,” so it seems that that is a non-answer to what is in fact a non-question. It has been observed that if you give an actual answer to the question, the questioner gets frustrated and impatient, as though they are annoyed that you would actually answer them. A whole conversation can actually go on like that, with general questions giving rise to pat answers so that you could actually change out any pair of people and you would end up with the same conversations each time. The vast majority of their conversations are not about anything of any substance, and, again, they seem positively annoyed if you try to engage them in such a conversation. As a group neurotypicals seem positively frivolous most of the time.

            This frivolity extends to their work. They treat work as a social experience rather than as work. They don’t seem to treat work seriously or to engage in it with the kind of attention we autistics do. How any of them can keep a job is a mystery. Perhaps their ability to lie to their bosses and to pretend deference to them is what keeps them employed despite their inherent laziness. They also do have a tendency to do things exactly as they are told to do them rather than to find new ways of doing things. While one could view this as a lack of creativity on their part, in many cases it is useful to have a group of people who will unquestioningly do what they are told. If you can keep them from wasting their time socializing, businesses could make good use of this tendency to conform and engage in groupthink.

How It Feels to Be Made a Problem

            I’m guessing you didn’t like the above description of yourself. You no doubt agree with many of the things listed, that they are all-too-often traits of the typical person. And no doubt many of you have made positive efforts to overcome those things—especially such things as racism and sexism. Indeed, we on the autism spectrum also make an effort to overcome what are perceived to be deficits. And yet, there are no doubt things I discussed above that you would argue are unusual, to say the least, interpretations of your behaviors. Well, guess what? That’s how we feel about many of the things we read about people with autism.

            For example, we read that we do not have empathy or a theory of mind. That’s utterly ridiculous to us. We fully understand you have a mind—we just treat you like you have a mind like our minds, which results in a number of errors on our part. But guess what? You do exactly the same thing. You treat us as though we ought to have your mind, and when we obviously do not, you actually go so far as to declare that we don’t have a theory of mind! In the past people used to dehumanize others from other races and cultures using exactly this same logic. Since the person from the other culture does not act like us, they must not be human like us. We now know this to be untrue—and to be outright racist—but this way of thinking still manages to creep into studies of people with autism.

            Yes, there are studies of young children involving hiding a toy, removing the child who saw where the toy was hidden, then moving the toy elsewhere and bringing the child back in where the young autistic children do not properly recognize who knows what, but where are the studies of older children and even adults? Why is it that we autistic adults don’t make this mistake? Could it be that the development of this ability is simply delayed rather than absent? Indeed, I see a great deal of evidence that people with autism have a tendency to have to learn through direct instruction many more things than do neurotypical people, who seem to have a large number of instincts that allow them to learn certain things more quickly. This is a difference in learning, not necessarily a disability or pathology. It is slower, but more accurate. As with anything, there are tradeoffs.

            Finally, I want you to consider something else we autistic are always hearing. Given the negative aspects of neurotypicals listed above, what would you think of calls to fix you? From an autistic’s perspective, you would be much better people if you were more autistic. You would lie less, be less biased and judgmental, and be less frivolous. You would waste less time at work and get more work done. You would say what you mean and mean what you say. From our perspective, life would be much better for you if you were more like us. Now how does that make you feel? I can describe you as a pathology, as a problem that needs to be fixed. I am certain you didn’t like it one bit. Well guess what? Neither do we. If people would spend more time talking to us rather than studying us as some sort of black box that can only be understood by external observation of our behaviors, you may have known that by now.

Different Isn’t Worse

            People with autism aren’t broken normal people. We are different. Our brains have different architectures, different biochemistry. It is driven by differences in our genes. All of which give rise to a different way of thinking and thus to different minds. Some of our minds are closer to neurotypical minds than others. It is a spectrum, after all. And some people with autism are definitely disabled when it comes to living in the neurotypical world. But then, there are extreme examples of the neurotypical mind as well—people who are pathological liars, people without morals, people who cannot seem to tell the difference between themselves and the external world. The difference is that they are closer to you, and thus seem more normal to you. To me, a man whose autism would be considered “mild,” those with severe autism see more normal. I get how they are thinking. It is different, not wrong. And if people were more accepting of those differences, I would predict that many of our extreme negative traits would lessen considerably. We are frustrated, and that frustration comes out in a variety of negative ways. But then, consider what would happen if everyone treated you as a disease needing to be cured and not truly understood in the least?

            Coming to this understanding between autistics and neurotypicals matters. Given the negative social consequences felt by pretty much everyone on the autism spectrum, we can only conclude that autism is one of the last ways of being human for which it is still completely acceptable to discriminate against. We are punished in the schools, discriminated against there, with the result that only around half graduate high school. Those who go to college don’t do much better. And even if, like me, one not only graduates from college but gets graduate degrees, one finds upon graduation that the work world is almost completely hostile to you. Not because we can’t do the work—because not only can we do the work, we will likely do it better than the average neurotypical person—but because we don’t interview well, we don’t acknowledge hierarchies, we are blunt, we come across as arrogant, and we aren’t social in typical ways.

            I wrote this piece in order to help the average person understand what it’s like to be treated as a pathology. It can just as easily be done to you as it has been done to us. Does that mean you are a problem that needs to be fixed? Or does that mean we ought to be considered fellow human beings whose minds are part of the natural variation among human beings, whose contributions to society are vital for social health? We correctly recognize that acceptance of cultural, ethnic, racial, and sexual diversity results in a healthy society. Perhaps we can one day soon include different ways of thinking, different kinds of mind as well.

Friday, July 15, 2016

Neurotypicals Have a Communication Disorder

I generally disdain the very idea that ignorance is bliss, but I may have come across an example of where it is most definitely true.

It is one thing to have everyone constantly misunderstand you and misinterpret what you do or say, but it is quite another to understand that everyone is doing that while also knowing there is almost nothing you can do about it. How do you control unconscious behaviors? If someone brings your attention to them, you can practice not doing them, but even that will only get you so far when it's a natural reaction to you.

It is remarkably easy for someone on the spectrum to get into the flow state. The flow state is one where you are mentally completely committed to what you are doing. The rest of the world drops away when you are in this state. And for me at least, it is a state of happiness.

Pop my bubble, and I can literally feel my brain cringe in annoyance. I may then immediately appreciate your popping my bubble (if, say, the house is on fire), but you're still going to get a flash of annoyance from me. I cannot help it. And even having it pointed out to me that I flash annoyance at you probably won't do anything to help me fix it. It's a gut reaction.

In the past, if you popped my flow state bubble, that was guaranteed to result in me having a meltdown and chewing you out. The fact that I have moved from that reaction to a momentary flash of annoyance means I have in fact improved in my reactions. I am sure my wife appreciates the fact that I had stopped having the strong reaction years before I met her. But I'm equally sure I have annoyed her with my look of annoyance at being brought back to the real world.

The problem is that people don't understand why I have the reaction I do, and they misinterpret it to mean that I'm annoyed at them. I'm not. I'm momentarily annoyed I was broken out of the flow state. If they did it to help me, I'm grateful and appreciative--and I try to let that be known. But all too often people care only about the nonverbal communication and not the verbal one. I cannot help the former one, and the latter one is always going to be honest. But people take it the opposite way.

Because of this, autism is considered to be a "communication disorder." However, if I was in a flow state and I was brought out of it by someone on the spectrum, they would understand my look. And they would accept my expression of appreciation as honest. We would communicate to each other quite clearly. It becomes disordered when it takes place between an autistic and a neurotypical person. And the disorder works both ways. To me, neurotypical people have a communication disorder. They do not communicate well, or even honestly, most of the time. You think you've smoothed things over with them, and they are still harping on it the next day. I supposed they communicate clearly enough to each other, but to me, they can't communicate jack squat most of the time.

If I weren't completely aware of all of this, life would perhaps be less frustrating. I would go through life unaware of all of these things, occasionally confused about why something has fallen apart socially, but mostly being blissfully unaware that there's anything wrong. I got by in that state for 40 years.

But now I know. I know, and there's little I can do about it. Unless I manage to educate every single neurotypical about autism and the fact that there are a whole lot of people out there with whom they are constantly miscommunicating. But I supposed that's the Sysiphian task set for me. The world is less because of this lack of understanding.

Wednesday, July 13, 2016

Non-Verbal Communication and Autism -- Some Personal Consequences

Autism is considered to be a communication disorder. It is of course much more than that, and the definition of dis-order depends on one's standard of order, but in a world dominated by neurotypicals, our differences are considered to be disorders. And given the consequences, we might as well call them that.

When we think of a communication disorder, we are typically thinking of language as communication. However, much human communication is non-verbal, and here autistic people face a number of hurdles as well.

I recently came to understand the degree to which this is true in a recent situation in which I was being correctly redirected to do something other than what I was doing. When the person redirected me, I realized she was right and that I should be doing something else, so I immediately complied. A bit later, though, she asked me if it annoyed her that she had redirected me.

When I am concentrating on something--as I was in this case doing--I tend to get "in the zone." If you do or say something to get me out of the zone, I feel immediately annoyed. I cannot help it, but I can often get over is as immediately as I feel it. What I didn't realize is that I also showed that annoyance on my face. Which is just as immediate and something I can't help.

Now imagine that I have been doing this all my life. Which I have. Without realizing it. Which I have. How do you think people will react to me? Or think of me?

For my regular readers, you may remember that this is not the first time this has happened to me where my attention was drawn to the look I was giving.

But I do have to wonder how many times something has gone awry because I was giving a look that I was unaware I was giving. 

This just ends up on my growing list of things I seem to have to tell people about me so they won't misunderstand my words, actions, and now facial expressions. Meaning I'm almost certainly going to have to always tell everyone I'm on the spectrum just to create the conditions under which I'll be less likely to be misunderstood. Meaning I'll get all the fun and pleasure of being directly discriminated against when people know I'm on the spectrum.

So those are the choices: open discrimination against me for being on the autism spectrum or have people decide they don't like me because of my "attitude." I've decided to take my chances with the former.

Friday, July 8, 2016

Reflections on Being a Student on the Spectrum

Teaching 2nd grade summer school Reading and Math, I cannot help but reflect upon my own elementary school education. I was always considered by pretty much everyone, including my teachers, to be a very intelligent child. Any bad grades were considered to be laziness on my part.

One area in which I struggled throughout my career as a student was math. I particularly had a very hard time with word problems. I also had some problem with certain areas of multiplication, and fractions made no sense whatsoever to me until I took high school chemistry. I failed 8th grade math, made a C in Algebra 1 (Freshman), Cs and Bs in Geometry (Sophomore), a B in Algebra II (Jr), and an a in Calculus and in Trigonometry and Analytical Geometry (Sr). In college, I made a C in Calculus I, and I failed Calculus II so miserably that I managed to make a fairly low F even doing all of the extra credit.

Math in elementary school has now gone almost completely over to word problems. When I was in elementary school, tests would have almost all numerical problems, and only about 2 word problems. That meant I could miss the word problems (which I almost inevitably did) without failing the test. But today, the quizzes I have had to give involved nothing but word problems. Meaning there's a very good chance that I would have been failing math well before 8th grade.

While there is no question that we need to teach children how to formulate problems (which is what word problems do), it doesn't make a lot of sense to teach formulating math to children who cannot add, subtract, multiply, or divide. That is, you absolutely must have the mathematical skill in place before you can move on to mathematical reasoning and formulation of problems. The latter may be most important overall, but you cannot skip establishing the foundation.

Now it may be that this way of doing things is the best way for certain students. I won't deny that possibility. But it's coming at the expense of other children. And if this is true, then the way I was taught it came at the expense of the kinds of students who do well in the way math is taught today. There are trade-offs. In this particular trade-off, I would have been the one traded, from doing well enough in math to pass to failing very much earlier on.

Another thing I have noticed about education today is that it's designed to be much more social. There's more group work and "shoulder partners" and sitting together on a rug and so on. None of this is exactly inviting to anyone on the spectrum, and I certainly wouldn't have liked school nearly as much if it had been run like it is today.

Indeed, though I was perhaps seen as highly intelligent but quirky (to put it nicely) as a child in the 1970s, I think there is little doubt that in the current school environment that I would have been identified as having something "wrong" with me. I would have been seen as refusing to participate and I probably would have had some quite negative reactions to a lot of this forced sociality (something perfectly fine for neurotypicals, who don't find it forced at all). I would have likely been identified as having ODD, if not Asperger's/autism. I probably wouldn't have been identified as having ADD/ADHD, because I was never outwardly hyperactive (inwardly, I'm in a dead run almost all the time), but I would have likely been sullen and I wouldn't have liked the classroom environment at all.

In other words, I think I would have done worse in school today than I did in the 1970s.

If it's true that I would have done worse under the way teaching is done today, then we may have some explanation for why none of the education reforms we've tried have ever worked to improve scores. It's because while the reforms help some children learn better, it ends up acting as an impediment to others. It also may explain the "rise" in ADD/ADHD and autism, since the way students are taught today seems to draw out many of their identifying factors.

But we ought to be a little disturbed that someone like me would probably no do well in today's system. The system I went to school in put me on the path to succeeding in college and graduate school. I fear that this system would have had me identified as a problem student and perhaps even having the autism I do in fact have. That is a problem because even though there is a lot of rhetoric around people with disabilities being able to succeed, the fact is that nowadays we are put on a pathway to "succeed" outside of a college trajectory--mostly because we are left unprepared to go. My brother, who has dyslexia, was discouraged from going to college in high school--and he now has a B.A., an M.A., and an M.F.A. You cannot tell me that autistic children aren't discouraged, directly or indirectly, from going to college.

What is worse is that, if I am right that the majority of advancements in the world were made by autistics, then we are doing a terrible disservice to the world at large by creating an educational system that educates perfect copiers well, but leaves reformers/inventors/creators on the sidelines.

Monday, July 4, 2016

A Proposal for Education Reform

All teaching should be structured so that autistic children can learn the material. Because if an autistic child can learn it, a neurotypical child will be able to learn is using that method as well.

That means anchoring language to images and repetition.

But it does not work the other way around. What works for neurotypical children won't necessarily work for autistic children.

Coincidentally, both do best in a Montessori school.

Saturday, July 2, 2016

KLE1738, GABA, and a Possible Autism Connection

I have written on the role of GABA in autism here and here and here. GABA is involved in calming neural activity, and having less of it is associated with autism. Now we have discovered a gut bacterium that seems to survive only on GABA.

Many of us on the spectrum also have gut problems. It may be that we need these bacteria, named KLE1738, but it also may be that one can have too many. Or, seemingly oddly, not enough.

It may very well be that one needs these bacteria to clear out GABA. Without enough KLE1738 to eat excess GABA, it's likely that GABA would get converted back to glutamate (enzymes work both ways, after all). This would keep glutamate levels high, and glutamate both contributes to positive feedback in the brain and to leaky gut.

This may in fact  be the more likely scenario simply because too many KLE1738 would result in starvation and result in the numbers dwindling back to normal. At the same time, one could imagine a scenario where there is a boom-bust cycle of KLE1738, with an alternation between too many and too few. Both too many and two few would result in GABA imbalances. And these swings could also result in the seeming bipolar behaviors we see in many on the spectrum.

Friday, July 1, 2016

Autism and Behavior, Choice and What Cannot Be Helped

There are a great many thing about human beings that we think can be helped and/or chosen. The most obvious that comes to mind is homosexuality. Many consider homosexuality a "choice," meaning homosexuals choose to be gay. Anyone who actually knows anyone who is gay knows this to be nonsense---most have known they were gay since at least puberty hit. They felt a natural attraction to members of the same sex that is as natural as the majority's attraction to members of the opposite sex. I no more chose to be straight than a homosexual chose to be gay. Our sexual orientations and subsequent behaviors are natural, no matter what those orientations and behaviors are.

But we forget---or don't realize---the degree to which many of our personality traits are genetically wired into our brains. Degrees of aggression or passivity, argumentativeness or agreeableness, curiosity or lack of interest in new things---one could go on and on---are primarily genetic in nature, and are often reinforced by the environments they create by the expression of those personality traits.

The same is true of people on the autism spectrum. We all have personality traits that are inherent to our brain structures and neurochemistry---which is also true of neurotypical people and their brain structures and neurochemistry---that strongly affects what behaviors are natural. And we cannot help those behaviors any more than a neurotypical person can help theirs. I mean, let us face it, the autistic ability to concentrate for long periods of time on one thing of high detail is something neurotypical people ought to be able to do, right? There are plenty of jobs out there that require those skills. All you have to do is change your behaviors and you should be able to do it, right?

Of course, the majority of neurotypical people (perhaps all of them) are horrified at the very thought. They would complain that it's boring, inhumane to make someone sit for hours and pore over highly detailed text or computer programs or whatever else fits the above description without much of a break, but the fact is that someone like me loves to do just that. The best job in the world for me has been the occasional proofreader jobs I have gotten, where I just looked for errors in texts. Eight hours of that is great. Love it. I am accurate and I am fast. It's a great job.

But I'm equally sure that almost nobody else would want that job. Is there something wrong with you if you would hate doing that? I can do it because of how my brain is structured. And most cannot do it because of how their brains are structured. It is neither better nor worse, just different. And you should be thankful people like me exist, to do the jobs that you don't want to do (and perhaps cannot do), but which need to be done. Probably everyone who writes code is somewhere on the spectrum. Certainly editors of code are.

So keep these things in mind when you see how someone is behaving. They almost certainly cannot help it. Which doesn't mean that behaviors cannot and will not change. If there is enough negative feedback (in both senses of the term), a person can be nudged one way or another. But even so, we shouldn't be surprised if there is some residue of the original behavior, or that we find it cropping up here and there. I have had to adjust to the realities of a neurotypical world that is outright hostile to many of the ways I behave---even those that we commonly give lip service to being positive traits, like creativity and "thinking outside the box" (two things most people actually deeply despise).

The current shift toward acceptance of homosexuality as a structural difference that results in behavioral differences does give me hope, though. We just need to help people to understand that being on the spectrum means we have structural differences that result in behavioral differences. It will probably help as we learn that autism doesn't mean just the most severe versions, but means people like me, people who have college degrees and are married and have always been considered a little "odd" or "quirky," but who find that the demands of society make living in society difficult at best.

All of this reminds me of the movie about Alan Turing, who was ostracized because of his homosexuality. People thought him a bit odd because of his autism, which was harder to hide than his homosexuality, but it was the latter for which he was punished. The feeling one gets from the movie is a feeling of outrage that a society that benefited so much from this man would then turn on him because of a trait he couldn't help.

It seems to me that we need to see some movies where the situation is as I have found it---that a society that benefits (or could benefit) from someone turns on him because of his autism. Because that is the reality right now for the vast majority of us on the spectrum. We are either directly punished if we admit to being on the spectrum (as has happened to me) or we are indirectly punished for our autistic behaviors, despite whatever benefit we may be bringing. We are deserving of a movie that will elicit such outrage.

At the same time, If the Alan Turing movie had been made in the 20th century, it wouldn't have elicited the same degree of outrage. Many if not most would have considered the sin of his homosexuality to outweigh his contribution. The movie could make its point precisely because we don't need the point made.

The same is likely true of autism. We will have to have a revolution in the way we think of autism. We will have to depathologize it (for the vast majority of people on the spectrum), and recognize that our "sins" are behaviors we cannot help, and which others need to learn to accept. We will have to have the autism version of Ellen and Will & Grace and change the cultural attitudes. We are different and our behaviors are odd---but no more or less odd than homosexuals' behaviors were considered within the lifetimes of most people (and still are by too many)---but we are humans of a different kind, and we deserve to be treated as such.