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.

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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.

More Support for the Intense World Theory; Or, Why We Hear Better Than You

We may start looking at auditory signs of autism based on two recent discoveries. One is that autistic people hear more sounds than do neurotypical people. The other is that the reason for this is that inhibitory pathways in the brain are weaker in autistic people.

Readers of this blog will not find the latter to be the least bit surprising. Weak inhibitory neurons would of course create more intense experiences of sensory input since inhibitory neurons dampen out information. They quiet things down, so to speak.

With weak inhibitory neurons, the excitatory neurons are necessarily going to dominate. This creates positive feedback, which makes for a more intense experience of one’s senses.

The first article also contributes to the increasing number of sources touting the positive aspects of autism. They point out that autistic people often do better than neurotypical people on visual and/or auditory tasks, spotting more continuity errors in videos and being more likely to have perfect pitch. I have little doubt that my high-level skills in proofreading have everything to do with my autism. Taking in an processing more information has its advantages.

Unfortunately, that “more information” doesn’t seem to include human faces.

Becoming of Thought

It’s easy to think nothing (not for me)–
It’s how most people live (but I am plagued
By never-ending thought–what luxury
To think about nothing). I’ve often begged
For silence, thought’s inaction (it’s an act
Performed by neurons using what they’re fed
And thus thought has no being) to refract
Us to a state I’ll only meet when dead.
When thinkers think to concretize their thought
To become being, being-thought, at last,
They turn to making, poetry, not nought
Embraced by nihilist, iconoclast.
And yet unthinking order guides each mind,
Unthinkers, thinkers both, to all they find.

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.

Nerds in Special Ed

There seem to be a lot of nerdy-looking children in special education classes nowadays.

Of course, there is a great deal of overlap between “nerds” and “autistics.” It’s not impossible that the overlap is complete, that when we talk about nerds, we are essentially talking about high-functioning Autism I.

When I was in elementary/middle school, there weren’t any “nerds” in special education classes. There were a lot of poor kids, but not a lot of kids like me. My brother ended up in the special reading classes, but only because our mother pushed for him to be in there because in 2nd grade he still couldn’t read. It turned out he was severely dyslexic. But they at first resisted him being in special reading because “he doesn’t misbehave in class.”

Why are there so many nerdy-looking kids in special ed classes when there weren’t in the past? I suspect it’s because when students–like Daniel–are diagnosed with autism, even high-functioning autism (Daniel has Autism II), they are given all sorts of accommodations that end up directing them into special ed classes. Daniel for example is only required to do 5 of his 11 spelling words, though we are certain he could do them all. Of course, if he doesn’t do them all, he won’t learn them as quickly as his fellow students, and he’s going to fall behind.

I suspect that a lot of these kids in special education classes–the nerdy-looking ones, especially–really have no business being in special education. They could do the work, and they are actually increasingly able to do the work the older they get.

Historically, the nerds have grown up to be computer designers and programmers, scientists and artists. What’s going to happen if those kids are being shuttled into special education?

Name-Amnesia

The names, they come and go–we label men
And women well before we know them–known,
The name forgotten–I would need a pen
To pin it down on paper scraps, then thrown
Down to the ground, up to the wind they’re strewn.
Perhaps a scraps will soon return–but when?
My name-amnesia’s only ever grown–
I recognize you, don’t know where it’s been.

Sea turtle names are easy, names of sharks
And orchids spring to mind with awesome ease–
I’ll tell you who or what I’ve read and show
My knowledge–meaning, memory–embarks
On nothing but well-traveled trails–but please
Don’t ask me for your name. I do not know.