I Am Not an Illness

By contemporary American standards, I’m mentally ill. I am mildly bipolar, I have had two nervous breakdowns, and I have Asperger’s Syndrome. I have had a great deal of difficulty “fitting in” to society. But just because someone does not fit in to a particular society at a particular time, does that mean they are mentally ill? I have an extremely good long-term memory and I am a poet. A few thousand years ago, that would have made me the tribal poet, who kept the myths of the tribe. I would have been Homer. Nobody would have thought it strange that I was mostly withdrawn and antisocial, until it was time for me to recite the stories. I would have been greatly valued then.

Or consider someone with schizophrenia, who sees visions. Today, we medicate such people. In other times and places, such a person was a religious leader, a shaman, whose visions were valued. The story of John Nash shows us how valuable schizophrenia can be — he rejected his medication, because he couldn’t think on them. Had he been medicated early on in life, where would game theory have been?

More, the story of John Nash shows us that even something as severe as schizophrenia can be dealt with without treating it as an illness. He learned to identify what was real and what was not real. Imagine what could happen if people with schizophrenia were taught how to deal with the visions, how to control or ignore them, rather than to have them medicated away.

If it is possible for John Nash, it’s possible for others. And it’s possible for others who have mental differences. We with Asperger’s or autism have to learn how to fit into society; the fact that I have been able to make any number of changes in how I act and interact over the years — before I learned I had Asperger’s — shows it is possible to change and adapt. It would help if our society actually valued our differences and did not punish us for them by telling us we are less than those who are neurotypical. We are not less than you simply because we are neurologically different. And being told we are — directly or indirectly, by pathologizing our differences — does not help us. Quite the contrary: being told we are less, many have decided it’s not worth being here on earth.

Consider Robin Williams’ suicide. The way his brain worked is why he was so brilliantly funny. Yet, the way his brain worked was also labeled as “mentally ill.” He was told that the very thing that made him who he was, the very thing that everyone loved about him and valued about him, was “wrong.” He was “wrong,” less than the rest of humanity. That’s what the rhetoric of “mental illness” does. It devalues and it dehumanizes. That’s enough to make most people want to kill themselves.

More, we make it impossible for someone who is having suicidal thoughts to talk about it. We are told that if we encounter a person with suicidal thoughts, we should tell someone. At the same time, we are told we need to be with a suicidal person throughout their suicidal episode, until it passes. But if you know that telling someone you are having suicidal thoughts will result in their telling the authorities, and if you know that one of the ways you can get locked up is if you are a “threat to yourself or others,” what is the incentive to tell anyone? There is none. The incentive is the opposite, in fact. Keep it to yourself, so you won’t get locked up (and become more depressed because you’re in a mental hospital).

We do need a national dialogue about “mental illness.” And the dialogue needs to be about how we need to stop pathologizing differences in this culture. We are well on the way with homosexuality. Now we need to depathologize most of the rest.


I recently posted on the interconnections among glutamine, glutamate, and GABA. The only thing I noted about GABA is its role in reducing anxiety. However, there is research that shows that GABA is directly involved in the workings of the inhibitory neurons known as basket cells.

So glutamate, which is involved in the excitatory neurons, is transformed into GABA, which is involved in inhibitory neurons. For those whose autism is caused by IWT, it seems that it would be worth looking at the glutamate-GABA pathway.

Troy’s Top 10 Causes of Anxiety

Anxiety is one of the main features of autism. If you’re on the spectrum, you have anxiety. But of course, we don’t all have the same sources of anxiety. Here are my top 10 (insofar as they were ten I could think of).

  1. Heavy Traffic — Actually, any traffic. I’m pretty sure I ought to be the only one on the road, ever.
  2. Not being able to say what I need to say before I forget it.
  3. Saying the “wrong” thing. “Wrong” of course being whatever is socially acceptable to the neurotypical majority of that culture.
  4. Doing the “wrong” thing. Similarly, “wrong” being whatever is socially acceptable to the neurotypical majority of that culture–not to be confused with “moral,” as autistics rarely have any problem with that.
  5. Not working–The brain is too busy to not be doing something, be it reading, writing, or something, anything.
  6. Working too hard at work to avoid upsetting people.
  7. People being factually wrong.
  8. People getting upset with me. I know I’m going to do something wrong without knowing why it’s wrong or that it’s wrong, and I’m anxious someone is going to get onto me about it, and I won’t know why they’re upset at me.
  9. Not being able to write down an idea before I forget it.
  10. Not having my expectations met. Especially someone promising to do something and then not following through. I keep expecting people to do precisely what they say they’re going to do, and I keep getting disappointed, and that creates anxiety when there’s no follow-through.

That is my top 10. What’s your top 10? Or, if your child or spouse is on the spectrum, what is theirs?

Death of a Sailfin

Daniel has a fish tank. He loves his fish–and clawed frog. I got it for him because I thought it would be a good idea for him to be responsible for something. My children can only have pets the can take care of.

Last night, I noticed one of his sailfin mollies was upside down at the bottom of the tank. Its gill covers were still moving, but moving fast, and I knew it would be dead by morning. So I told Daniel it was going to be dead. This was all right before bed, so after telling him this, I put him to bed.

That, of course, was not the end of it.

Daniel, to his mom: I want to bury it in the backyard.

Daniel, to me: Do you remember Episode One? I want to play the music they play when they burn Qui-Gon.

Daniel, to his mom: What happens to your body when you die?

His mom explained to him that the body turns to dust and that the soul goes to heaven.  About five minutes later, Daniel calls for me to come into his bedroom.

Daniel: Dad, if our bodies turn to dust, how are there fossils?

This, naturally, turned into a discussion of how fossils are formed through the mineral replacement of bones under the right conditions, and how those conditions are rare, so most bones do in fact turn to dust or dirt.

Daniel: Dad, what are bodies made out of?

This then turned into a listing of skin and bones, muscles and brain. I then pointed out that as we develop our brains, we develop our souls, meaning we need to behave well, do good things, not be rude, and learn a lot in order to develop our souls and become good people.

This morning, the fish was, of course, dead. I removed it from the tank and put it in a Zip-lock so it would be ready for burial this evening after school. Having been prepared for it, Daniel wasn’t at all upset.

Melina (his sister): Daniel, I’m sorry your molly died.

Daniel: Why are you sorry? You didn’t have anything to do with it. It’s just part of the life cycle.

Death and dying in the house of autism.


Living With Someone With Autism

I suppose it must be tiring to live with someone who has autism. Especially younger children, and especially the more severe it is. You never know what’s going to cause a meltdown, and getting upset at the child having the meltdown only makes things worse. You have to step back, let things calm down, and then try to guild the child toward calmer responses to things. You feel like you’re walking on eggshells all the time, and you hope eventually the meltdowns will stop.

I do understand the feeling, even if everything is in many ways in reverse for me. I feel like I’m walking on eggshells all the time. I’m always afraid I’m going to say or do the wrong thing at the wrong time to the wrong person.

For example, it can be hard to have a discussion, let alone an argument, when you have short term memory problems. You know you heard the person say something that led to you having a particular response, but you don’t get what they said exactly right, and then they rightly are upset that you got what they said wrong. But you don’t mean to get them wrong. Worse, in any sort of discussion that is even a little heated, it can get confusing and you start hedging and trying to find your words, and while you’re trying to find your words, the other person is still going.

Now imagine you have a history of people misunderstanding you, taking what you say and do wrong, because they are interpreting all your behaviors as being neurotypical, even when they ought to know better (because most of our interactions are driven by unconscious assumptions, you cannot actually expect people to ever be consistent in their treatment of and assumptions about you). You go through life always wondering if you’re saying the right things and doing the right things, and you can never be yourself, and you have to always adjust your thinking and your behavior to everyone else. Talk about walking on eggshells! It’s no wonder we on the spectrum are full of anxiety all the time.

So I can understand why parents of autistic children, why those with autistic spouses, might feel they are always walking on eggshells. I really can. And I’m sure, given that Daniel seems to hold things together pretty well at school, that he understands to a great degree as well. After all, he has to constantly adjust his behaviors to everyone else’s expectations. It’s our jobs as parents to help our autistic children to be able to do that by helping them come up with coping mechanisms better than getting upset–even if there is a great deal to get upset about in the world.

Autism, Empathy, and Practicality

I have previously written about the issue of whether or not people with autism have empathy or not. My son’s reactions to two episodes suggest that the claim people with autism do not have empathy is in fact quite wrong.

Our babysitter for our two youngest once hurt her leg mowing her grass. The lawn mower threw out a brick, and cut and bruised her pretty badly. Daniel’s response was, “I’m going to grow up and become a doctor so I can fix your leg.”

What this suggests to me is not a lack of empathy, but a focus on solving the problem. Rather than giving a “there-there” response that may make one feel better emotionally, he gave a (to a 4 yr old at the time) practical solution to fix the problem. Is that a lack of empathy or evidence of it?

Another time our youngest, Dylan, hurt himself shoving a q-tip into his ear. He was bleeding and we took him to the emergency room to make sure he was okay. Anna and I were in other rooms when it happened, and only Daniel saw what Dylan had done. So when the doctor asked what happened, Daniel stepped up and started trying to explain what happened. Understand that Daniel was 4 at the time and in a strange place for the first time, talking to a strange person — but he was more concerned about making sure the doctor knew what happened than he was with being in a new situation with a new person. More, he went up to Dylan while he was crying and patted him on the leg. Again, Daniel focused on the practical, but in this case he also tried to comfort Dylan.

As for me, I stayed calm as I first cleaned Dylan’s ear to try to look at it, then took him to the emergency room. Was the fact that I was calm an indication that I did not have empathy? It might to some people. Am I being unempathetic when I focus on the practical and try to figure out ways to actually solve the problem at hand rather than say or do something that sounds nice but doesn’t actually help anyone or, worse, panic? I don’t think so.

Asperger’s, Autism, and IQ

It seems that people who process sensory information differently are those we identify as having a high I.Q.

Of course, “sensory processing problems” is a main aspect of autism. Does this mean that those with autism ought to have a high I.Q.?

Well, historically people with autism have been shown to have lower I.Q.s than the general population. However, those with Asperger’s generally are seen to have higher I.Q.’s than average. Now, if Asperger’s is, in many ways, simply autism without the language delay, then this raises some interesting issues. Are the low I.Q. scores for those with autism a result of language issues? It seems that that may in fact be the case. Indeed, when alternative measurements of intelligence have been used with certain people with autism, their I.Q. scores jumped from “mentally retarded” to “genius.”

Consider the results from the first article. Two of the aspects of people with high I.Q.s are the ability to focus and to pick out details. These are aspects commonly found in people with Asperger’s especially. It is part of bottom-up thinking — the details give rise to the big picture for someone with autism. Neurotypicals, on the other hand, see the big picture first — this is part of top-down thinking. As a result, they may miss the details, just as bottom-up thinkers may miss the big picture.

In a sense, this means that “high I.Q.” is practically equivalent with “having autism.” Or at least “having Asperger’s.” And as we find more and better ways of reaching non-verbal and low-verbal autistics, I suspect we will find more and more high I.Q.s out there.

Part of the issue involves the general ability to integrate the details. Integration of details becomes increasingly problematic as you move along the autism spectrum. Those with Asperger’s can integrate the best among those on the spectrum, whereas the most sever may not be able to integrate at all. Such a person would, of course, be identified as having severe mental deficiency, since they cannot make any sense of the world at all. The result, it would seem to me, would be a sort of U-shaped range of I.Q., with large numbers with high I.Q. being closer to the Asperger’s end and there being a tipping point of inability to integrate then resulting in very low I.Q.s at the extreme other end.

The result of this would be a situation where those with Asperger’s would appear to have high I.Q.s on average, whereas those with autism would appear to have average I.Q.’s on average. Of course, if you average a group that in fact has two groups in it — one with high I.Q. and another with low I.Q. — you would expect the average of that larger group to be average I.Q. All of which points to some problems with looking at groups statistically without paying much attention to the details.

Home, Where Autism Was the Norm

I’ve come to realize I was raised in a very autism-friendly home.

The house I grew up in was quite dark inside. There was dark brown paneling, brown carpets, and fairly dim lights. The “brighter” spots with lighter carpets and so on tended to have dark furniture that had the effect of darkening things.

My mother also didn’t put up with a lot of noise. The T.V. was kept low, the music, when played, was kept pretty low. We couldn’t run around and yell and scream. Mom didn’t put up with throwing fits. Everything was kept calm and quiet. And clean and orderly.

In other words, it was a place where, if you had sensory integration issues, you would feel comfortable.

Also, while there always seemed to be kids around at our house, my mom let me sequester myself in my room any time I wanted to get away from everything and everyone. She never insisted that I play with the other kids, even when people were over. I could always get away to my room, and my room was pretty much off limits to everyone if I wanted it to be.

There were also woods behind our house, and my parents would let me go out and walk around in them by myself. Dark, cool, and full of plants and small animals and streams–it was a perfect place for me to get away while still being outside.

I suspect my mother kept her house this way and was so understanding about my need to get away from others and have time to myself because I suspect she had Asperger’s herself. Unfortunately, she died in May of 2001 from mesothelioma, so she never found out I have Asperger’s and she never got to meet any of my children. I didn’t even know my wife at the time, and I suspect she wondered if I was ever going to marry and have children, seeing as I was almost 30 when she died.

I also suspect my mother’s father also had Asperger’s. He seemed to have all the traits, and in the same way that I can relate to my son best, he seemed to relate to me best among his grandchildren, and my mother best among his own children. He liked to keep things orderly and quiet, and he needed time to himself as well. And his job as Asperger’s perfect–he was a computer expert in the 1950s and ’60s!

It may be the case that my mother, because of all the inadvertent support and ideal environment she provided me, actually managed to mask most of my autistic symptoms from me and the world for a long time. The strange things I did weren’t considered strange. The home environment was ideal. Autistic behavior was practically considered normal. And I thrived.

Until after graduate school, anyway.


Everyone is familiar with the autistic child lining up his toys or food or some other object. But did you know that making lists is a kind of “lining up”?

Well, list-making was the kind of lining up I did as a child. I made lists of sharks, drew pictures of sharks and fish in panels and labeled them (thus making visual lists), and I made lists of orchids. Whatever was my obsession at the time, I made lists of them.

But here’s the funny thing–I haven’t actually ever stopped making lists.

I have a collection of short stories I have written (only a few have been published). Half of those short stories either contain lists or are lists. More than that, today I realized that my tendency to list features or objects in my sentences is itself a form of list-making. That is, listing is part of my aesthetic!

Here are a few examples from a novel I’m currently working on:

“dressed mostly in browns, greens, grays, and black,”

“It seemed as though half the activity in the marketplace involved stealing, chasing, catching, or escaping.”

“The air was cooler than the morning before, and smelled crisp, clean and—temporarily, at least—not of manure, trash, and people’s waste.”

“They arrived at last, drawn in the last few yards by the smells of breads, sweet breads, sweet cakes, sausages, cooking meat, and spices.”

These are all kinds of “internal lists.”

So if your child likes to make lists–or if you love to make lists yourself–congratulations, you have an autistic trait. It does of course make perfect sense that listing would be one of those traits, since it is a form of lining things up. It’s just a literature lining of things up.

It might be interesting to consider the styles of certain authors and see how dominant listning is in them.

400 Distinct Autisms (and some ADD)

In complex systems, many causes can result in the same effect. This is true in social systems, neural systems, and biological systems. And we can see this in the fact that there are at least 400 distinct autisms, at least from the perspective of causes.

The above linked article also notes that one of the causes of autism is also a known cause of ADHD. It has been suggested by a friend with ADD that our daughter, Melina, might have it as well. If there is in fact a connection between ADD and certain kinds of autism, that would make sense, given my (obviously) heritable autism. There is a known protective effect from being female when it comes to autism, and it may be that ADD is what peeked out with Melina.

This points, too, to the fact that when it comes to multiple causes, we have to understand that those causes are all interacting with other causes, affecting effects. This is true in biological systems, neural systems, and social systems, equally. In other words, there could be and likely are a number of environmental factors that affect genetic expression, including degree of expression and thus severity of one’s autism.

We are fortunate that, as the above article as well as this one both point out, we are discovering just how heterogeneous autism is. What is equally interesting, though, is the degree to which that heterogeneity gives rise to similar enough outcomes that we would call them all “autism.” It will be interesting to see how the genetic differences cluster into varying behavioral groups and neural structures.