Keeping Up Appearances

I’ve read that autistics tend to not care about their appearance. I did. In a certain sense. In elementary school, I always made sure my hair was perfect. I would wake up–on my own–at 5:30 to take a shower every morning. I had to wear dress shoes because only those were all-leather and fitted with a Thomas heel, which was necessary because of my feet and hip problems, but I did not have to wear the dress slacks and button-down shirts I wore literally every day everywhere, including to school. That’s why I said, “In a certain sense.” After all, as you can perhaps well imagine, my classmates all thought I dressed ridiculously, and they made fun of me over it. Even my closest friend encouraged me quite often to wear jeans.

When I started high school in the mid-80s, I started wearing jeans. Acid-washed jeans, but not regular jeans, and certainly not any with holes in them (as was the other trend of the time). I did not change that look until I started trying to dress in a sort of “grunge fashion,” which I got all kinds of wrong by wearing regular button-down shirts (as opposed to flannels) unbuttoned over t-shirts. Now I mostly just try to be comfortable, wearing shorts when I can and t-shirts. I avoid long-sleeve shirts because I cannot stand for anything to touch my wrists.

I wonder to what degree autistics “don’t care” about their appearance vs. caring but being unaware of how their appearance looks to others. Perhaps people mean autistics are less likely to brush their hair or perhaps even their teeth. But has it occurred to anyone that someone who is sensitive to touch may find brushing their hair to be an activity that actually causes pain? Has it occurred to anyone that mint might be such an overwhelming flavor and feeling to someone who is autistic that they would avoid brushing their teeth? Given there are few non-mint toothpaste flavors out there (almost all for children, especially after the lemon and orange flavors disappeared from the shelves), and given the “hot” flavor of cinnamon toothpaste likely being a turnoff for many autistics, is it surprising there are autistics who avoid brushing their teeth?

So this issue is a more complex one than neurotypicals realize. As with many things, “not caring” is perhaps a neurotypical projection of neurotypical motivations onto autistic behaviors. That is, they look at an autistic person who is dressed a certain way or doesn’t brush their hair or doesn’t brush their teeth or doesn’t wear deodorant, and thinks, “Well, if I did/didn’t do those things, it would be because I didn’t care.” But that’s simply not true. It’s no more true than if an autistic were to say, “That person has nothing they are completely and totally obsessed about? Why, they must not care about anything at all!” (But that is what we autistics secretly think about all you neurotypicals! 😉 )




Social Cognitive Development Through Games: Do You Know Me?

Over a year ago, Anna and I overheard Melina playing a game with Daniel. She called it “Do You Know Me?” She was asking him questions like “What is my middle name?” and “What is my favorite superhero?” And he was answering.

Anna and I both realized at about the same time that what Melina was doing was absolutely brilliant. She had Daniel engaged through the use of a game format, and the same was a social game. By asking Daniel these kinds of questions, she was helping him learn about her, including aspects that that were similar in nature to his own interests. And by asking explicit questions, she was also giving him explicit answers, meaning she had him engaged in explicit learning of things that many children learn in more indirect ways, through more passive observation or social interactions.

She also expanded the questions beyond herself to include the rest of the family. For example, she asked him, “What is daddy’s middle name?”

It probably won’t surprise anyone that Daniel did quite poorly in correctly answering these questions. (When Melina asked, “What is my favorite superhero?” even I would have guessed “Super Girl,” and would have never in a million years guessed that it was “Black Widow.”) But these are the kinds of questions people on the spectrum ought to be asked so they can learn more about the people around them. Knowing a bunch of trivia about a you might even make an autistic person want to get to know you even better.

Cows Eat Grass, Not Vegetables

Once I was trying to get Daniel to eat some chili I had made. I used to make a kind of chili with beans that he liked a whole lot, but my wife found a new recipe without beans and with a lot of other vegetables that Daniel is less of a fan of.

So I told Daniel we had chili for dinner.

“Is it with vegetables?”

“Yes,” I said.

“I don’t want it.”

“But you have to eat vegetables. They’ll make you grow up to be big and strong like Daddy. You want to grow up to be big and strong like Daddy, don’t you?” I asked.

“Yes. I want to eat lettuce.”

“Lettuce will make you big and strong like a bunny.”

“A bunny?!?”

That’s when Dylan, who was 4 at the time, chimed in.

“I want to eat vegetables and grow up to be big and strong like a cow!”

To which Daniel said, “A cow?!? You want to eat grass?!?”

This interchange tells you a lot about the difference between Daniel and his neurotypical younger brother. Dylan immediately understood that cows eat grass, grass is a plant, plants are vegetables, and therefore cows eat vegetables, meaning that if he ate his vegetables, he could grow up to be as strong as a cow.

Daniel understands that cows eat grass. While Daniel is a genius at cause-and-effect relationships and patterns, he clearly does not (immediately, at least) see conceptual patterns. He clearly does not have a broad-enough definition of “vegetables” so as to include grass, though Dylan could make that connection immediately.

Generalizing from a single example to other situations is difficult for people on the spectrum. This is one reason why we are socially awkward. Every social situation comes pretty close to being new and unique. It takes a lot of similar interactions for us to begin to generalize, and the fact that social situations are all different on some very complex levels makes learning them extremely difficult. As Temple Grandin observes in Thinking in Pictures, “autistic children need to learn everything by rote. One or two warnings won’t do” (97). In this particular case she was talking about how telling an autistic child to not cross the street may result in the child not crossing the street in front of their house, but not realizing that other streets in front of other houses is meant in that rule as well. That has to be specifically pointed out.

Grandin also points out that this inability to generalize causes inflexible behaviors (38) precisely because practically every situation is new. Everyone has been in a new situation in which they felt uncomfortable and didn’t know what to do or think or say. Most people like to stick to their routines to avoid truly new situations. But for most people there are few truly new situations; most situations have a family resemblance to other situations they have been in. But suppose you went through life and every situation seemed like a completely new situation. Wouldn’t you be anxious, fearful, unsure what to say or do, uncomfortable, and want to get back to what you know?

As we can see, the autistic epistemology wherein concepts are built from the bottom-up after many iterations of the perception (an epistemology promoted by Ayn Rand and Nietzsche, both of whom almost certainly were on the Spectrum) results in extreme difficult in generalizing and, thus, more rigid thinking where you have to be taught things more explicitly. With neurotypical people, many concepts are either innate or developed after only one or two examples. This means that generalization is fast and easy.

In the highly social neurotypical world, this means that many classical autistic “individuals usually learn to talk, but they remain very severely handicapped because of extremely rigid thinking, poor ability to generalize, and no common sense” (46). Of course, the last one is really just a poor ability to generalize human behaviors. And all of these have to do with the way concepts are formed.

Cows eat grass. They don’t eat vegetables.

Autism and Human Evolution

Although some traits of autism can be observed almost at birth (since we now know what we’re looking for), it is notable that it becomes most obvious around the age of two. This is, perhaps not coincidentally, when the first round of synaptic pruning and massive cell death occurs. This massive change in the developing toddler’s brain is why two-year-olds go through the “terrible twos.”

It is also notable that autistic brains show a lack of synaptic trimming. This results in an over-connected brain. Temple Grandin in Thinking in Pictures notes that autopsies of autistic individuals shows brains that look immature, particularly in the cerebellum and the limbic system, and that EEG scans show brain waves more typical of a 2-year-old’s (50), causing her to suggest that “autism is caused by immature brain development” (54).

If you think about it, if we were to understand the autistic brain as being the brain of a two-year-old’s that, nonetheless, manages to simultaneously mature in important ways, we can make sense of the traits of autism. Does a toddler understand what is and is not socially appropriate? How often do toddler’s embarrass their parents with their honestly and straightforward observations–including that the emperor has no clothes? Two-year-olds are infamous for their tantrums. Toddlers of course tend to be more literal and to not get metaphorical speech. Given the lack of language, it is almost certain toddlers are visual thinkers. When they do talk, their speech seems all over the place, even associative in nature. Toddlers expect everyone to be honest and kind. They don’t have fine motor skills. The senses have not yet become fully differentiated, meaning they experience a degree of synesthesia. Etc.

If you were to make a list of toddler traits and place it next to a list of autistics’ traits, the overlap would be overwhelming.

Coincidentally, there there is a second time when there is massive synaptic trimming, and that is during puberty. Lack of trimming during this time is associated with the onset of schizophrenia.

Lack of trimming up through the age of two gives you autism; lack of trimming through puberty gives you schizophrenia. This simultaneously suggests that the two are indeed related to each other, and at the same time that it is absolutely right to separate the two.

In the case of autism, what we see is a retention of infant/toddler traits as well as the development of new kinds of traits as the brain simultaneously develops and does not develop. The retention of infant traits in adults even as the adults mature is known as neoteny. And it’s not uncommon in nature. And it is particularly notable that neoteny seems to be a central part of great leaps in complexity in evolution. There is some evidence that humans are essentially a neotenous species of ape. And all vertebrates are neotenous sea squirts.

Does this mean that autism is a great leap in human evolution? It’s not impossible. That may be hard to believe given the difficulties involved with having autism, but it may also be true that there is nothing unmessy about evolutionary leaps in complexity. In fact, we know from the scientific/mathematical study of such leaps–known as catastrophe theory–that such transitions are both chaotic and often momentarily traumatic to the system. Which means that autism itself may not be the next stage in evolutionary complexity, but may perhaps be a stage to the next stage. Part of the evolutionary discovery process.

This could in part explain the gradual increase in cases of autism. I say gradual, because the apparent sharp increase is caused by a combination of redefinition and increased identification of autism in the population. At the same time, I’m willing to be there has been a real increase in cases over the past several millenia, or more. Again, this is what you would expect in an evolutionary discovery process.

The oddest thing about this potential leap into a new level of complexity is that it seems that people with autism are particularly well-adapted to computers and the internet. If I could manage to make a living only ever being online, I would probably never get offline. I communicate with far more people online than I do in the real world.

More, it seems that autistic brains actually work more like artificial neural nets than like neurotypical brains. I did a great deal of reading about ANNs when I was working on my Master’s in biology, and I continued reading about them over the years. I learned how they work, how they create concepts, and when I started reading about autism, I noticed almost immediately that the autistic brain works in almost the same way, create concepts in a bottom-up fashion in pretty much the same way. Also, if you read Temple Grandin’s book Thinking In Pictures, you will note that the way she describes the way she stores memories is much like a computer stores memories–exactly as seen/input. A computer cannot store information any other way. And as Grandin observed, “A severely autistic computer programmer once said that reading was “taking in information.” For me, it is like programming a computer” (38). I must admit to using the same language when talking about reading and learning new things–I refer to myself as an “information junkie.”

Come to think of it, given that people like Alan Turing were almost certainly autistic, it may be that the computer is a co-evolutionary product of autism. It may not be a coincidence that autistics are well-adapted to the very environment we (Alexander Graham Bell, Alan Turning, Bill Gates, and any number of computer programmers) created.

Progress in Language Skills

Recently Daniel has been showing the degree to which he has been making progress in his language skills. Two areas in which he has shown improvement have been the initiation of conversations and the use of figurative language–two areas typically difficult for those on the spectrum.

Anna’s mother recently had a surgery, and we had talked about it a little bit around the house. When Anna’s mother came up for Thanksgiving, as soon as she sat down upon arrival, Daniel went up to her and asked her about her surgery, and then told her he was happy she was doing better. This was the first time Daniel had ever initiated a conversation. It wasn’t the first time he started talking to someone–but simply starting to talk to someone isn’t the same as properly initiating a conversation. Daniel will ask you questions about sharks or Star Wars or planets, but he’s not going to ask you about how your day went or, well, pretty much anything at all about you. So him asking his grandmother how her surgery went–and doing it on his own–was major.

The other one happened yesterday. I was having the kids clean up their rooms and the toys scattered throughout the house, and finally Daniel decided he was finished. He announced that if he continued cleaning, in 5 minutes he would blow up. I told him I wanted to see that, so keep cleaning for 6 minutes. He said, “I’m not going to actually blow up. It’s like saying I’m hungry enough to eat an elephant. If I did that, I’d die. Like the old lady who swallowed the horse.” I told him, “Oh, then, since you were just being hyperbolic, keep cleaning.” He gave a huge groan–which he does any time you “got” him–and he finished cleaning.

The significance here, of course, is that he not only used metaphorical language–hyperbole is of course metaphorical–and use it correctly, but was able to explain it. That doesn’t mean he’s now going to get that people are being metaphorical and will no longer stop taking people literally (I’m a poet, playwright, and fiction writer, dealing with metaphors all the time in my reading and writing, and I still take people literally when I shouldn’t), but he’s on the way to doing it less often. It’s important to understand that people don’t always “mean what they say” in this sense.

Daniel receives a variety of special education services at his elementary school, Arapaho Classical Magnet, including speech. A good speech teacher and a good special education program in general will get results, and I think we’re seeing some of those results in Daniel’s development of these skills. After all, among the foci of his ARD is being able to initiate conversations. That’s not something I have tried to work on with him, though I have tried to help him with non-literal language (something I’m better with because of my being a language artist, while I still struggle with initiating conversations outside of bombarding you with my interests). So I’m glad at the progress his teachers have made with him, and I think it’s important to give credit when it’s due. After all, our first instinct often seems to be to just complain when something goes wrong–and perhaps we need to focus more on giving credit when something goes right.

Why I Am an Expert in Autism

I do not have a degree in psychology or neuroscience with a concentration in autism. So what, then, makes me an expert in autism?

First of all, not having a degree in something doesn’t make one an expert–or prevent you from being an expert. There are plenty of ignorant fools with Ph.D.s. And while I wouldn’t want to go so far in describing most neurotypial experts in autism, I would have to insist that there is a certain degree in which they are necessarily and irrevocably ignorant, and that is in understanding autism from the inside, in how it’s experienced. Interpreting behaviors without understanding the inner experiences that lead to those behaviors will often lead you to the wrong conclusions.

A favorite wrong conclusion is that autistics don’t have a theory of mind. This is something which I have written about before and refuted. In fact, it we autistics could posit that because neurotypicals didn’t think like us, they didn’t have a theory of mind. Yes, I often don’t know how you’re thinking or why you’re doing something, because it would have never occurred to me to do or think that way. For the longest time I simply thought everyone else was simply stupid and irrational. Since I found out I am on the spectrum, I’ve come to realize everyone else’s thinking is normal and it’s mine that is on the long tail. That is, neurotypical people think in neurotypical ways, and I think in autistic ways, and some of those ways overlap, and some of them don’t, and that’s okay.

But how does any of this make me an expert in autism. Well, an expert is simply someone who knows a lot about a subject. I have done a great deal of research on autism–and you need to keep in mind that my idea of research is formed by my degree in biology and my Ph.D. in the humanities. I don’t just read a few popular books on autism, but rather have read a great many scientific articles on it. I would be willing to put my knowledge and understanding of autism up against anyone with a Ph.D. who studies autism. More than that, because of my expertise in complex network processes, I can bring that knowledge to their knowledge and expand on it–as I indeed have. More, I can take all of this data and interpret it through my own experiences, explaining what the data really means.

Many people desperately need the kind of information I can provide from my expertise. Scientists who study autism certainly do, because I think a great many misunderstandings about autism are promulgated because a behaviorist approach is being taken to study autism. Special Education teachers especially need to understand their students from my perspective. Perhaps especially those who are dealing with nonverbal students.

For example, I have been substitute teaching lately, and I almost always pick the SpEd positions. Which keeps me working. Of course, these positions are always with either a teacher or a paraprofessional in the classroom, so I am really mostly backup for the person who knows what they’re doing with that classroom. Taking these positions means I have gotten to observe students across the spectrum as well as what happens in SpEd classrooms up close and personal. While everyone working in the SpEd classes I’ve been in are doing their very best, their very best does not have a foundation in a real understanding of their students–perhaps especially their autistic students.

A recent example of this involved a non-verbal autistic girl at a high school. The teacher (I was subbing for the paraprofessional) said she thought the girl should get her hearing checked because when she was watching a video on the computer with the headphones on, she would always turn the volume way up. I pointed out that autistic hearing is actually backwards to neurotypical hearing. For a neurotypical person, the brain turns down the volume on background sounds in order to hear the foreground sounds better. This is sort of the very definition of focus.

With autistic hearing, there is no distinction between background and foreground–and often, we hear the background better than the foreground sounds. To hear the TV when everyone is at home and making noise, I have to turn the TV up to around 80 (out of 100), but when everyone is in bed and there’s no noise whatsoever in the house, I can hear the TV perfectly at 23. Daniel’s hearing is so sensitive that, when he was around 4-5 years old, he would cry that he couldn’t go to sleep because he could hear the airplanes overhead. While we live in the Dallas metroplex, we don’t live anywhere near either of the airports. You wouldn’t hear them.

Once I explained these things to the teacher, she understood what was going on. And she further told me that that explained a few other things, though she didn’t go into detail about those other things with me. Indeed, understanding the autistic experience of the world does go a long way to explaining many of our behaviors. Those experiences are fairly universal, even if they are on a spectrum. But if you understand even the cases that don’t result in someone who is non-verbal and not potty trained as an adult, you will understand many of the behaviors of those at the most extreme end of the spectrum.

So yes, I am an expert in autism. I am the kind of expert people ought to be searching out precisely because my expertise isn’t just academic, but equally experiential as well.

8 Perspectives On Our Autism Talk at UT-Dallas

Recently I wrote about the talk Anna and I gave to a graduate class at UT-Dallas. The professor sent us a thank you note and comments from different students that “were taken from the final assignments of the students in Atypical Development. Their task was to think over the past semester and write about the topic that was most interesting to them.” Several chose our talk.

“…the guest speakers covered the material which is not available from lectures and readings. …they validated the relevance of the class content.”

“I especially got a lot out of the talk with Anna and Troy about their journey with autism. It was an important reminder that this childhood disorder not only effects [sic] the child, but the family that raises them.”

“I am also grateful for Troy’s firsthand explanation of why some of the actions of individuals with Autism are socially awkward. I appreciated his detailed description of the difficulty he had with short term/working memory and how it causes him to have a sense of urgency with revealing mundane details in fear he might forget them. His anxiety that tidbits of information never spoken are destined to be forgotten in conjunction with his natural inability to understand social cues gives great insight to the stressful inner workings of an autistic brain. The linearity of his thoughts and need for clear explanations of how to handle specific social situations shows the great difficulty that those on the autism spectrum face and the stresses they go through for everyday social interactions.”

“I also greatly appreciated Anna’s open discourse on what she faced as the mother of a newly diagnosed autistic child, and later, the wife of an autistic man. Her strength was shown through her open discourse with Troy on social matters and her ability to help guide him and her child while still caring for other children in her family.”

“I have spent a while pondering on Troy’s comments about how autism can be looked at as a different personality type and not necessarily a disorder and that society as a whole can share in finding solutions for social inclusiveness with those with these types of disorders, rather than putting the entire burden on the affected individual to conform to preconceived societal norms”

“I really enjoyed the guest speakers, Troy and Anna, who came ans spoke to us last class. I found it very interesting to hear a first-hand account from an adult who has Asperger’s Syndrome and hear about the unique experiences in his life. Troy and Anna also have the exceptional perspective of dealing with two types of autism within one family (Troy and their son, Daniel). I could relate to Anna saying that she had to be very literal with Troy. (after an undergraduate practicum working with young adults with Aspergers.)

“The family that came to our class to speak about their day-to-day life dealing with their autistic son really brought together all of the concepts we learned about autism this semester. Getting to hear about the family’s personal lives truly illuminated what happens beyond the exam room.”

“I really liked that the husband and wife were very open and able to answer any and all of the questions that we asked. …in addition, both the husband and wife expressed how the father was able to interact with their son in his own way. …I found it deeply eye opening that the father said he appreciated that his parents did not attempt to prevent or break his atypical behaviors. I absolutely loved that he mentioned his unique view of combining the strengths associated with autism and the strengths associated with neurotypical individuals into something spectacular in kids and adults that have autism.”

We’re very happy the students seemed to get so much out of our two hour talk and Q&A. The great thing is that we can talk about autism from so many perspectives. As a mother (Anna), as a father (me), and as a spouse (Anna), from the outside (Anna) and from the inside (me), both personally and from a scientific standpoint. This may be a unique set of perspectives. I manage to take the scientific information and put it into a personal perspective and use it to explain our thinking and actions. This group, at least, seemed to respond quite well to it.