On Consent

There have been several times where I have noticed that children with high-functioning autism have a difficult time stopping what they are doing when someone withdraws their consent.

Let’s say that an autistic child is playing around with another child. Let’s say they are wrestling around, and the autistic child is on top of the other child, and the other child is yelling for him to get off. I have noticed that it usually requires a third party to get the autistic child to stop what they are doing, or for the other child to actually resort to physically pushing him off or even hitting him to get him to stop.

After noticing it in other autistic children, I noticed it in my own son. Daniel doesn’t know when to take “No” for an answer, that when people tell him to stop doing something, he should stop doing it. He doesn’t seem to hear the person refusing or withdrawing their consent. As a consequence, I have been making  a particular effort to help him understand that you always need the other person’s consent if you’re going to do something with them. This may include something as simple as having a conversation, but it may involve play as well. And, when he gets much older, it will definitely have to include sex, to say the least. The last thing anyone wants is for their child to make that mistake.

The good news is that after only two weeks of talking to Daniel about consent and not continuing to do things after he was asked to stop doing them, this morning on the drive to school his sister asked him to stop making some noise he was making, and he actually stopped, saying, “OK. I’ll stop.” I immediately thanked him for doing so.

When I was a child, my mother would often accuse me of being “argumentative and aggravative.” I think to a great extent those two tendencies–which I have found to be not uncommon among autistics–are part of that issue of consent. Someone who is aggravating another is continuing to do what they are doing beyond the point where the person has asked the person to stop. The one doing the aggravating may not stop because they are trying to annoy the other on purpose, or they may not stop because the request just isn’t registering properly. If it’s the latter case, you can teach the person that when people ask you to stop, the rule is that you stop.

There are perhaps few lessons as important as this one to teach, whether your child is autistic or not.

Is ADHD Really Anxiety?

There are a few traits that are almost completely co-morbid with autism: chronic anxiety and ADD/ADHD. If you have autism, you have anxiety and attention problems.

Autism, though, isn’t the only thing where anxiety and attention problems are co-morbid. The same is true of post-traumatic stress disorder (PTSD). When you have PTSD, you are in a state of constant anxiety and constant hyper-vigilance. Hyper-vigilance means you are constantly actively keeping close tabs on the environment. Your attention is drawn to every little thing, to anything you catch out of the corner of your eye.

This hyper-vigilance sounds an awful lot like ADD/ADHD. Hyper-vigilance is actually how I would describe my ADD. It’s not that I have a hard time paying attention–rather, I have a hard time not paying attention to literally everything around me. To the person I’m directly in front of, it’s going to appear that I am having a hard time paying them attention, though.

If we understand ADD/ADHD as hyper-vigilance, this could then easily explain why many with ADD/ADHD can pay close attention to video games, for example. After all, many video games simulate conditions in which hyper-vigilance is needed to succeed.

Obsessive focus on an area of interest could also be understood as hyper-vigilance. Hyper-vigilance will also require hyper-focus if and when the “danger” is located. When there is no actual danger, that hyper-focus could manifest itself in a variety of other ways, including obsessive interests.

Hyper-vigilance comes out of anxiety, and we autistics are full of anxiety. In our case, the anxiety stems from our constantly being bombarded by sensory input. We’re overstimulated, and oftentimes that stimulation doesn’t get integrated well. It should not be surprising if an intense environment should result in hyper-vigilance within that environment. Anxiety is the intermediary.

While I myself do not use any kind of medication, and we do not use medication on our son, I do understand why some might want to medicate themselves or their children. The typical medication is for ADD/ADHD–things like Ritalin–because that’s the most problematic behavior. However, if my suspicions are correct, we are very much treating the symptoms of anxiety rather than dealing with the deeper cause–the anxiety itself.

Since we cannot rewire the brain, we cannot treat the ultimate cause (and we with autism probably wouldn’t want to do that, anyway, since that wiring is part of who we are as human beings), but anti-anxiety medications may go a long way toward eliminating at least the co-morbidity of ADD/ADHD. They would also likely alleviate some of our social issues, which stem from that anxiety.

The general rise in ADD/ADHD and the high prevalence of it in the U.S. can, I believe, based on this thesis, be traced to the fact that our school system is making our children far more anxious than ever before. But that’s a whole other set of issues. I will say, though, that rather than putting more children on Ritalin and related drugs or anti-anxiety medications, perhaps if our schools treated students as ends in themselves rather than as means to achieve testing outcomes to make administrators look good and justify their 6-digit salaries, there wouldn’t be nearly as many children with ADD/ADHD.

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.

Oxytocin and Autism II

Oxytocin is an important neurotransmitter, and one which has been implicated in autistic behaviors. Known as the “love hormone,” there’s a lot more to it than that. According to Psychology Today,

It regulates social interaction and sexual reproduction, playing a role in behaviors from maternal-infant bonding and milk release to empathy, generosity, and orgasm. When we hug or kiss a loved one, oxytocin levels increase; hence, oxytocin is often called “the love hormone.” In fact, the hormone plays a huge role in all pair bonding. The hormone is greatly stimulated during sex, birth, and breastfeeding. Oxytocin is the hormone that underlies trust. It is also an antidote to depressive feelings.

As I have noted before, oxytocin has a dark side, meaning low levels of oxytocin not only reduce one’s desires for social interaction, but also reduces the tendency to engage in “groupthink,” the worst versions of which are racism and sexism. To the extent that autistics don’t engage in in-group/out-group thinking, we have a general tendency to not engage in racism and sexism.

However, do note many of the behaviors noted above. I suspect that it’s not just any empathy that’s affected by lower levels of oxytocin, but the specific kind autistics have problems with. Coincidentally, the kind of empathy we autistics have problems with is the same empathy that actually makes people favor their in-groups over out-groups and thus can make people behave in racist and less moral ways.

Also note that oxytocin is as much the sex molecule as the love molecule. I have read that many autistics have little to no interest in sex. While that’s certainly not universal (I’m sure other hormones, etc. are involved and affect sex drive as well), it seems to be much more common among autistics than neurotypicals. Low levels of oxytocin would explain this phenomenon. Ironically, since having sex increases oxytocin levels, those who lack interest in sex due to low oxytocin levels are behaving in such a way as to maintain low oxytocin levels.

The connection to trust is a bit odd to me, as I find autistics to be generally quite trusting. However, it may make sense if trust is tied to in-group members, and distrust to out-group members. Without that distinction, it may be that we are simply more trusting of out-group members, and thus we seem more trusting overall.

Here is an interesting overview of the research to day on the connection between oxytocin and autism. I have also written about the connection between touch and increasing oxytocin levels in a post titled Hugs Help.

The Mesolimbic Reward Pathway

The mesolimbic reward pathway is a neural system that helps people be more social. The larger it is, the most social a person is. Perhaps not surprisingly, it’s smaller in people with autism.

What this pathway seems to do is make social interactions pleasurable. Again, the larger it is, the more pleasurable one’s social interactions are going to be. That is, you get rewarded for being social. While it’s likely social interactions aren’t actually made painful by having a smaller pathway, social interactions simply aren’t as pleasurable. If you’re not being rewarded for something, how likely are you to do it?

The authors point out that they haven’t untangled cause and effect quite yet on this. Do more social interactions cause the mesolimbic reward pathway to increase, or does its size increase social interactions?

This makes me wonder, though, why it is that many of us on the spectrum find pleasure in certain things–more so, it seems, than do others? For example, my clipboard gives me pleasure. I use it to do most of my writing. My books give me pleasure. I’m very happy just looking at them in my library. Is there a pathway in the brain for object-pleasure? Or does the mesolimbic reward pathway make social interactions so much more pleasurable that neuroptyicals prefer social interactions over the pleasure things give them?

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.

 

Autistics vs. Socipaths

I want to make a bold proposition: the polar opposite of the autistic is the sociopath.

The autistic is internally chaotic and thus attempts to order the world–we seek order and seek to create order. That’s why young autistics in particular love to line things up (or make lists, as I did, which is really the same thing). It’s why we love structure in our lives and prefer for things to be predictable. Chaos added to chaos is just too much.

The sociopath is internally overly-ordered and thus attempts to bring chaos to the world–they seek chaos and seek to create chaos. They are extreme risk-takers and thrill-seekers. In its healthiest forms, they may climb mountains; in its unhealthiest forms, they may be serial killers. (Of course, not all thrill-seekers are sociopaths, though we do know that thrill-seekers do need more stimulation than does the average person.)

Each is seeking to balance order and disorder, as all of nature, from the level of quantum physics up through living things, human psychology, and human societies, does. When the internal world isn’t both ordered and disordered simultaneously, but is imbalanced in one direction or the other, balance in the external world is sought.

We do not have the sociopathic equivalent of the severe autistic because while too much chaos can make one unresponsive, too much order won’t have the same effect.

If my thesis is true, the sociopathic brain should be dominated by negative feedback (too much glutamine, too few synapses, etc.) and thus need stimulation (challenges). Challenges require strategies, so we should expect sociopathic people to be more strategic. We would also expect them to be more “social” and more outgoing and charming as a result. As a result, sociopaths both tend to be attracted to positions of power, and people tend to reward them by giving them power. You will find an extremely high percentage of politicians and CEOs to be sociopaths (though sociopathic CEOs also tend to be the least effective because of their tendency to take risks and not actually care about anyone else).

The autistic brain seems to be dominated by positive feedback (too much glutamate, too many synapses, etc.) and thus need a more calming atmosphere (which is why challenges can frustrate autistics). Autistics don’t seem to be particularly good at strategy, but tend to be creative problem solvers (mostly to try to order everything). They would then also be more likely to be introverts and anti-social, though this primarily comes about because we’re perceived as “socially awkward” by neurotypicals.

 

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.

On the Double-Mindedness Developed Among the Different

In The Souls of Black Folk, W.E.B. Du Bois says that blacks have a sort of doubleness in them not found among whites. Blacks cannot just “be themselves,” but must always think about how they are being perceived by whites. This creates a sense that you are always of two minds: that you are not only thinking and doing, but that you are thinking about how others perceive you, and adjust accordingly. Whites never have to deal with this. Being the majority and having the majority power, they can just be themselves without worry about how anybody is thinking about them.

Du Bois would probably not be surprised if he learned that other minorities were put in similar situations in the U.S., but it probably didn’t occur to him that there were people out there with different kinds of minds, and that they too would develop such a doubleness.

I know all about this double-mindedness, because I experience it constantly. I not only have to think about what I’m going to say or do, but I have to think about how others might take it. I can either just say or do whatever I want as I want and hope that I don’t do something that will set people off, or I can always consciously think about everything I say or do before I say or do it, testing against what I expect the expectations are (and hoping I’m getting those right). If it takes me a moment to respond to something, it’s because I’m going through all this nonsense to make sure I don’t say or do something wrong.

Now, you might expect this to take place in a 45-year-old man, but you wouldn’t expect it to take place just quite yet in an 8-year-old boy. However, Daniel has said some things that shows he–on some level, at least–does understand that he has to engage in this double-mindedness.

While we all behave differently in different environments–school, home, church, work, etc.–rarely do we think these things through. However, when I asked Daniel one day if he behaved at school the way he did at home, he told me that because he has to keep it together at school, he likes to “go crazy” at home. That is, this is something he’s actually thought through. Other children may do the same thing, more or less, but how many would articulate it as such?

More negatively, Daniel has complained that his “brain is rotten.” He understands that the way his brain works is not the same as everyone else. While we would certainly prefer him to think of his brain as merely different and not as “rotten,” we get what he, as a 7-year-old at the time, was trying to articulate. When he complained one time about this, we pointed out to him that I have autism, just like him, and (because the kids happened to be watching Ghostbusters II at the time) that Dan Akyroid has autism. We suggested that someone with as much education as I have and someone who is a successful and funny actor couldn’t really have rotten brains, but that rather our brains were just different.

Unfortunately there is the too deeply human belief that “different is wrong,” and Daniel will have to learn otherwise as he matures. Because I hardly thought of my brain as rotten (everyone always said how smart I was), I thought that everyone else, being different from me, were wrong. The way that they thought was stupid, as far as I was concerned. Now, knowing what I know about myself, I realize that it is my way which is divergent and different–but that doesn’t mean rotten and wrong.

Daniel also sometimes insists that nobody likes him, that he has no friends. When we ask his teacher, she keeps insisting that he plays with the other kids all the time, meaning that there is some sort of disconnect between what others see happening and what Daniel seems to perceive. I think it’s pretty clear that Daniel understands that the other kids all think he’s “weird,” which he interprets as them not liking him. It probably doesn’t help that Daniel directs play more often than not, and can get upset when people aren’t “playing right.” Most kids aren’t going to like that, and Daniel, not understanding why they wouldn’t want to be his pawn pieces, interprets that as them not liking him or wanting to play with him. So there is likely some combination of awareness and ignorance at play, though both are driving Daniel to develop this dual awareness.

It’s probably a bit much to expect neurotypical people to allow us to just be ourselves. After all, viewing neurological differences as positive is a recent development, and it’s going to take a while to catch on. Maybe there will be a day when people with different neural structures or different cultural backgrounds can just be themselves without having to think about how they will be perceived by the power majority. We don’t know what will be gained, or possibly even lost, if and when that happens, but it would be interesting to at least find out. Daniel’s double-mindedness is already being developed; perhaps his own children won’t have to go through that.

Neurodiversity and Group Selection

Humans are hypersocial, but hypersociality doesn’t necessarily mean acceptance of diversity. And yet, humans do manage to be both hypersocial and accepting of difference. Recent research suggests that the acceptance of diversity occurred about 100,000 years ago, and allowed for more general accepting of such diversity as autism.

Why is this important? Well, if wider acceptance of neurodiversity, meaning diverse ways of thinking and behaving, were to be adaptive for groups, we would expect humans expressing such acceptance to have come to dominate. What was later developed as specialization and gains through trade likely started with a general acceptance of different kinds of human behaviors within the tribes.

Why is acceptance of neurodiversity important? Well, neurotypical people are great at copying what everyone else is doing, but it turns out that as a result, they are actually pretty poor at coming up with new things. Autistic people in particular tend to try to solve things without relying on how things have always been done. This results in innovations that improve the material conditions of everyone in the tribe, and which everyone else dutifully copies. As a result, there is a balance between stable copiers and unstable innovators that keeps human populations on the edge of order and chaos, known as criticality. This is in fact the most creative space a self-organizing network process can be in.

Presently there is not a lot of acceptance of neurodiversity, at least not in the U.S. There is some anecdotal appreciation of a few people who people think may be on the spectrum, but these people are typically seen as outliers rather than a healthy part of our social networks. So much emphasis is put on everyone being the same and acting the same and thinking the same (lip service to “thinking outside the box” notwithstanding) that people who are in fact different in the ways they think and act and experience the world are held in contempt.

In fact, it is this contempt in which we on the spectrum are generally held that I try to focus on many of the positive aspects of being on the spectrum. We need to have healthier attitudes toward neurodiversity precisely because groups that don’t have such diversity stagnate at best. And really, nature abhors stagnation, meaning there is either growth or death. Dynamic tensions create growth; eliminating those tensions results in equilibrium, or death. A healthy society is a diverse society.