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.

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Bullying or Joking Around?

Today my wife went to The Warren Center to attend a presentation on bullying and special needs children. The presenter suggested that we encourage Daniel to engage in self-advocacy, that we perhaps should have his teacher discuss with the class the fact that Daniel has autism and what that means–if Daniel agreed to it (which he has), and that we role-play certain scenarios.

We decided to try a role-playing scenario. Anna pretended to be a mean girl insulting our daughter, Melina; then, I pretended to be Melina’s friend just joking around.

Anna: Oh, hi, Melina. Wearing those glasses you look like a real nerd.

Me: Was that mean, or just joking around?

Daniel: It was mean.

So far, so good. I then went.

Me, in a playful voice: Hey, nerd! What’s up?

Anna: Was that mean, or just joking around?

Daniel: It was mean.

There’s little question that anyone not autistic would have very easily picked up that I was joking. If you’re an autistic adult, you would probably even pick up on it from the umpteen times you’ve seen people interacting just that way and having a laugh about it. But Daniel just turned 9, and he’s still learning.

The problem is that we cannot trust Daniel’s judgment on whether or not he’s being bullied. He’s saying his friends are being mean to him, but it’s not impossible that his friends (assuming for a minute he’s making the right judgment that they are in fact his friends) are just joking around with him and he’s misunderstanding the social situation. He also wants to be loyal to his friends, so he is loathe to mention anything negative about them. He doesn’t want to lose the friends he has, regardless of how they may (or may not) be treating him.

Hopefully, if and when his classmates are given the presentation about Daniel’s autism that the bullying will stop. We’ll probably have to have them address the issue of Daniel’s difficulty understanding playful banter among friends, where you insult each other to show camaraderie, precisely because Daniel doesn’t understand it and may be mistaking it for being mean.

Sharing a Co-Morbidity Doesn’t Mean Autism Doesn’t Exist

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My wife shared this image on Facebook. The things surrounding “autism” are all things that can be co-morbid with it. For example, I have general anxiety disorder–meaning I have anxiety all day every day–but I don’t have Tourette’s. Not everyone who has general anxiety disorder has autism, of course, but if you are autistic, you have general anxiety disorder. And not everyone with Tourette’s is autistic, but a higher percentage of autistics have Tourette’s.
 
There are those who think that having daily rituals is having OCD. Having rituals is not really quite OCD. Rituals are a way to create order in life, and is therefore something you will find autistics doing at much higher rates than, again, the non-autistic population. True OCD would involve someone who cannot leave a room without turning the light switch on and off exactly 15 times each time, or who gets “fascinated” by a shoe for 30 minutes straight. Or it may involve being unable to stop thinking about something all the time–such as sharks, for example, or in my case, self-organizing scale free network processes. The benefit of having what one could call “OCD thinking” is that one can become a scientists or scholar, and then you’re actually paid for what you can’t stop thinking about. You can get a Ph.D. with that way of thinking.
 
Of course, if you’re always thinking about certain things, if your brain is always running at 150 mph, you may have a hard time paying attention. My own hyperactivity is mostly in my thoughts, but Daniel has a hard time sitting still unless he’s involved in his obsessions. Which simply means his hyperactivity is internalized.
 
These things themselves come from the fact that the autistic brain is dominated by positive feedback. Complex systems like the brain have a combination of positive and negative feedback. Negative feedback helps to keep things in equilibrium. The thermostat for your heater/AC uses negative feedback to keep the temperature the same. If you had a positive feedback thermostat, the hotter the room became, the hotter the heater would try to make the room. Things go faster the faster they go. Hyperactivity then occurs because you’re getting overstimulated. This can then push over into a situation where you become overwhelmed by the situation. Reactions to this can include extreme escape behaviors, banging your body against a wall while becoming non-responsive, or having an outright meltdown where you cannot control your actions. The overstimulation occurs in no small part because we also have sensory integration disorder. That means we have a hard time separating out visual input from sound from touch from all of the rest of our sensory input. I experience it as a feeling that my mind is being crumpled up like a piece of paper and everything goes black.
 
I also come with some extreme sensitivities. I cannot stand to have my wrists touched. I jump every time someone does that. I want to remove my skin to get away. But I try to downplay my reactions because people will just think it’s “weird.”
 
Autism is a fundamental structural difference in the way the brain is wired and works. It results in a very distinct set of behaviors. Yet, it is a spectrum, and that spectrum goes from truly debilitating (what is now called Autism 3) through “high-functioning” (Autism 2) to Asperger’s/Autism 1 and, I would argue, ADD/ADHD. Yes, most of the elements which are often co-morbid with autism can be found elsewhere. I have a slight tendency toward manic-depression, but there are certainly people with manic-depression who aren’t autistic, and there are people with crippling depression who aren’t autistic. Yet, those are found among autistics at much higher rates.
 
Those who like to throw around the argument that “autism” is a “mere label” are really just trying to downplay some very concrete elements of reality. There are some things that are “mere labels,” and some things that absolutely are not. Having structural and biochemical differences in my brain that result in my mind being very different from non-autistic people isn’t a label. It’s an acknowledgement of that reality. I’ve enjoyed the giftedness and even the OCD that has come with it. I couldn’t have gotten my Ph.D. without it. And yet, my sensitivities and “weird” behaviors have definitely affected various aspects of my life. One of the best things to have happened to me was for me to realize I was autistic and to get officially diagnosed. It cleared up why I was argumentative (have ODD), why I couldn’t understand why everyone else wasn’t as rational or couldn’t see all the complex patterns I could see. It cleared up why I have all my sensitivities, why I think the way I do, why I avoid being in the middle of large groups of people, why I have blackout and movement seizures, why I have a delay in my response to people, and why I can get confused if people don’t give me the processing time I need.
 
The benefit of knowing I am autistic goes beyond that. Now I’m no longer just that weird person who doesn’t like to socialize who inexplicably alternates between being wonderfully kind and friendly to appearing to be rude (from failing to notice things going on or being confused about a given situation). Those behaviors are now able to be explained. Which doesn’t mean I shouldn’t have someone say, “Hey, so and so said hi to you.” I do. It helps. Nor does it mean I shouldn’t have certain behaviors pointed out to me, because when they are, I become more conscious of them and the fact that they may make non-autistic people uncomfortable, so I should try to change that behavior. At the same time, there’s always a degree to which we cannot help our behaviors. In a room full of autistic people like me, the non-autistics would stand out and it would be their behavior which would seem out of place. And if we insisted they fit in, they would seem socially awkward and would have an extremely difficult time fitting in.
 
The long and short of it is that autism is a real thing with real behavioral and cognitive differences in those of us who have it. It’s important people know Daniel is autistic. That way people can understand that if he’s in a situation with a lot of people where he’s being completely overwhelmed that he’s not an out-of-control brat who just need some strong discipline to straighten him up, but actually cannot integrate what is going on, positive feedback is dominating, and he’s so completely overwhelmed he shuts down until he resets (in a closed system like the brain, positive feedback doesn’t run away forever, but rather creates cycles). I want people to understand that. I want people to adjust their expectation and to make room for “odd” behaviors so they can reap the benefits of our existence.

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.

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?

Daniel’s Nomination Speech

The entire 2nd grade class at Arapaho Classical Magnet is going to elect a president for the entire 2nd grade class. Each class has nominated a person, and next a second round of speeches will result in all the 2nd graders voting for a class president. Any student who wanted to participate could do so.

Daniel came home very excited. He said that he had an opportunity to give a speech to his class and he wanted to give a speech on sharks. It was a few days before we found out that the speech was to get his classmates to vote to nominate him for their class. When we told him what the speech was really about, and that he couldn’t just give a speech about anything he wanted, he lost all interest in giving it.

Fortunately, Anna pushed him to write and give his speech anyway. He had been so excited to give it, and we were excited that he wanted to do it, but Daniel didn’t want anything to do with the speech afterwards. So Anna proposed that Daniel could make his platform about getting his teachers to teach more about sharks during 2nd grade.

Naturally, this would seem to be the perfect solution. But equally naturally, nothing is going to be quite as clear-cut with Daniel. “What if the teachers show a video about a shark eating a dolphin? Then they’ll just hate sharks more!” I managed to persuade Daniel that it wasn’t likely they would show a video like that if they taught more about sharks. Satisfied, he agreed to write a speech encouraging people to vote for him on the platform that he would get the teachers to teach more about sharks.

Anna sat with him and helped him with the speech. It was a negotiation between informing people about sharks and trying to get people to vote for him.

The teacher recorded Daniel giving his speech.

It will probably not surprise anyone that he didn’t win on an all-shark platform. However, we are very proud that he actually wrote his speech–the longest thing he ever wrote–and gave his speech in front of the class. It was no small thing for him to do.