When I Tell You “My Son Has Autism”

If my son is behaving in a way that you don’t like or which you think is dangerous for himself or others, and I say to you, “My son is autistic,” that does not mean:

  1. That I am excusing or justifying or even defending his behavior.
  2. That you should just keep doing what you’re doing like I said nothing.
  3. That you know more about what to do in that situation than I do, even if you’re an expert (you may be an expert in whatever activity we’re doing, but you’re not an expect in doing it with an autistic child).

Rather, what it means is:

  1. You should shut up and listen, because
  2. You are almost certainly doing something that is completely ineffective, or
  3. You are doing something that will make things worse, which could mean
  4. You are creating an even more dangerous situation.

When a parent of an autistic child is telling you that their child is autistic, it’s usually because there is a situation occurring in which what is being said and done will make things worse, not better. While threats (of not doing the activity, for example) may work with neurotypical children, they don’t work with autistic children. They either won’t care or, worse, they will care a great deal and be pushed toward having a meltdown over it.

If you are actually concerned about safety, and a parent tells you that their child is autistic, it’s time for you to shut up and listen, because it’s clear to the parent that whatever you’re doing or saying is making things more dangerous. You don’t dismiss us, and you certainly don’t double down.

We parents of autistic children know what works. It’s your job to seriously shut up and listen. I cannot emphasize this enough: S.T.F.U. and LISTEN!

Now, once you are listening, once you are paying attention, you will be told how to solve the problem. More likely, the parent will have a better solution once you explain to the parent what you need from their child. And if you want to actually have a positive interaction with an autistic child, don’t threaten, don’t raise your voice–literally don’t do anything you think would work, because you’re wrong.

Rather, calmly address the child and use reason to explain to them why they shouldn’t do what they’re doing. They will listen. And they will give you the behavior you want. Because while the autistic child may often appear like they’re not behaving rationally, the fact is that they respond to reason better than a neurotypical child does.

So, please, the next time someone tells you, “My child is autistic,” just shut up and listen. The person isn’t looking to make excuses. They’re trying to help you understand. And they’re trying to help you solve the problems occurring with their child.

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Autism and the 2-Year-Old Brain

I am certain that one of the ideas I have about autistics will likely annoy some people because they are bound to misunderstand it. That idea is that autistics essentially have the brains of two-year-olds. While the feedback to that linked post was all positive, I still don’t want people to misunderstand what I mean when I talk about this topic, because I know people will mistakenly think I’m just saying autistics are “childlike” or some such nonsense, or that we’re “retarded” (too bad that word hasn’t been quite retired). However, nothing could be farther from the truth.

At the same time, it occurred to me that we could look at some traits of 2-year-olds and see if my thesis is correct.

First, I want to quote a comment made on one of my past posts:

If autistic people missed part of a brain update around age 2, it would make a lot of sense to have a really good long-term memory but not so good short-term memory. Isn’t one of the main functions of a 2-year-old’s memory to learn as much new information for use for the rest of his life? At that stage in life, I would imagine long term memory would be a much better investment than short-term memory.

I think this is probably true. It would, I think, explain this aspect of the way our memories work. It would also explain why many are more visual (at the cusp of learning language, the child would actually be more visually-oriented) and also why many are good at seeing patterns (finding the patterns of the world is vital to living in it), as these traits continue to get developed through the delay. And we also know that delays in development can result in improvements in function.

So, that having been said, I want to look at the traits of 2-year-olds.

  • Temper tantrums are common in this age group.
  • They may play with other children for a short time, but aren’t yet capable of true sharing.
  • They find it hard to wait or make choices.
  • They can’t understand reason or control their impulses.
  • They love to copy adults, in both appearance and activity.
  • They may be bossy.
  • Two year olds have difficulty distinguishing reality from fantasy.
  • By three, most children can follow complex instructions.

We could rephrase these such that they sound like you’re describing an autistic person. While we know there’s a huge difference between tantrums and meltdowns, that difference may not be quite so clear-cut among 2-year-olds. Older autistic children typically only play with other children for a short time and have a hard time sharing. I know I have a hard time waiting, and I have a hard time making choices (as my wife can attest when we’re trying to pick a restaurant).

An interesting one is the one about understanding reason and controlling their impulses. The latter is certainly true to a certain degree. That’s our weak executive function–weak also in 2-year-olds. But if anything, we’re hyper-rational. If there’s anything we understand, it’s reason. I think, though, that our cognitive delay may in fact be among the reasons for our strong rationality. It’s more developed, because developed more slowly. Not to mention that it’s a replacement for our weak executive function.

Eulalia is essentially copying adults (or films or TV shows). We tend to be bossy. My son has a hard time distinguishing between the cartoons he watches and reality–he’s always asking me for clarification of what can and cannot happen in the real world compared to the cartoons he watches. And it’s well-established that we all have a hard time following complex instructions, but rather need things broken down.

The fact that many of these traits continue as children become older, and often into adulthood, suggests the mature-yet-2-year-old brain hypothesis–a form of neoteny–may be worth further investigation.

NOTCH2NL–The Human Gene?

There is a gene–NOTCH2NL–that is found only in humans (and Denisovans and Neanderthals, once upon a time). It’s actually part of an ancient family of genes, but this particular version is only found in humans–and, more, we have multiple copies of it.

What this gene does is slow down the development of stem cells into neurons. Why does this matter? This delay actually causes more stem cells to turn into neurons, meaning without NOTCH2NL, our brains wouldn’t have anywhere near as many neurons and thus wouldn’t be anywhere near as big.

This gene is found on chromosome 1, in the location 1q21.1. As the original article in Cell notes, additional copies of this region have been found in people with autism. In other words, it’s possible that at least some autistics have even more copies of NOTCH2NL, resulting in even more neurogenesis. More neurons could push the brain toward greater positive feedback, which seems to be a main feature of autism regardless of various potential causes.

What this implies is that the very process that made us humans–the proliferation of NOTCH2NL (after it evolved)–could be behind the emergence of autism. In other words, some autistics may be more human than human.

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.

 

Time to Write

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

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

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

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

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

On Anxiety

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

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

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

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

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

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

You know, like writing.

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

Meltdowns

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

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

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

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

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

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

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

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