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.

Daniel’s Stoic Philosophy

Last night Dylan threw up after having had a stomach ache all day. Waiting to get in the shower after he threw up, Dylan was very upset and said he hopes he never gets sick again. Daniel responded, in perfect stoic philosophy fashion, that Dylan will indeed get sick again.

Of course, most people would take such a statement as literally the opposite of comforting. We’d be outright offended if an adult said what he said. However, Daniel meant it as a kind of comfort. It was clear, from the way he said it, that it was meant to help Dylan be less upset. If he’s certain to get sick again, it makes no sense to get this upset now about it. Perfect stoic logic.

Of course, this isn’t the first time Daniel demonstrated stoic logic. Dylan is a bit OCD, and he cannot stand to get any water on his clothes. And I do mean the smallest drop of water will make him want to change clothes.

One day, while I was wetting his hair to make it more manageable, I got his shirt a little wet. Dylan of course started complaining that I got the shirt wet and that he wanted to change his shirt. Daniel overheard him and came and tried to comfort him by explaining the concept of evaporation. He told Dylan that over time the water would turn into air, so there was no point in getting upset, since the shirt would be dry soon.

Again, this was Daniel trying to comfort Dylan. Daniel takes a very practical approach to solving emotional problems that is likely to seem cold to most people. But if you think about it, what’s a better demonstration of concern than to actually help you change the way you think about a situation so you’re no longer upset?

A Day at Work with Asperger’s

I think it is important that neurotypical people understand how we on the spectrum experience the world.

I’m a substitute teacher and one day last year I went to a high school I would often sub at. When I arrived, they did not give me the class for which I signed up, but had me help in the counselor’s office.

For most people, I suppose, being reassigned when you show up isn’t a big deal. But it is for me. When I saw the fact that I was assigned something other than that which I had chosen, I felt a wave of dread and anxiety. I cannot stand for my expectations not to be met and I do not like things being changed at the last minute. If you want to put me in a bad mood and make me uncommunicative, that’s a great way to do it.

What was worse was that I had to deliver documents to students. That meant going to different classes and having to interact with different teachers. The first thing I did was put the documents in order of room number because the randomness of the order drove me crazy. Then I went from the third floor down to each floor. There were three sets of documents, so I had to visit several class rooms more than once.

I don’t like doing this sort of thing because for one I don’t like interrupting people teaching. And if the door is open, I don’t really know the proper way to announce myself, so I just stand there until someone notices me.

In once classroom a teacher got mad at me because, like I had done in every other classroom, I announced the student’s name for him to get his document. She informed me that I was to hand the document to her and she was to call the student’s name. I told her I was sorry, but nobody had told me I was supposed to do that.

What I really, really, really wanted to say was, “I have a Ph.D. and I have a higher I.Q. than anyone working here and I have to do this ridiculous job because of people like you, so get off my back!”

But I’m pretty sure that would have come across as uncooperative and arrogant.

Instead, I just did as she told me from thereon out. Even though she was the only one to object. Because a confrontation like that–especially one where, because of the social situation I’m in, I cannot actually respond–freaks me out, causes me anxiety, and causes me to go over and over and over the situation that just happened.

The last class period I was put in the In-School Suspension room. There were only four students. When the school day ended, maybe a minute before the bell rang, the students came up and asked me if they could leave. The clock said it was 4:15. I told them they could go. When I left, a vice principal came up to me and asked if the students had left with my permission. I told him yes. He told me I had to keep students from bell to bell. Then he looked at me and said, “Excuse me, do you have a problem with what I just told you?”

I don’t know what look I gave him, but I decided not to try to figure it out. So I told him, “I’m sorry. I have Asperger’s. Whatever look I gave you…”

He shook my hand and sent me on my way. In my head, I thought that apparently my face doesn’t always reflect the content of my mind and heart. He was the first to point it out. I have to wonder how many just went with their interpretation and didn’t confront me and just went away thinking I have a bad attitude. I have to wonder how often a mistaken look has cost me something.

Autism in the Schools — A Personal Narrative

After losing a full time freelance to full time position because the company I was working for learned I have Asperger’s and, as they put it, they had “no intention of accommodating you,” I started substitute teaching for Dallas ISD. Because I live in Richardson, a suburb just north of Dallas, I was restricted, due to travel time, to which schools I can teach at. And through some sort of bizarre set of coincidences, I was somehow only been able to take special education classes — meaning, I was surrounded by autistic children almost every weekday for over half a year.

It was a very eye-opening. I saw and interacted with autistic children in elementary, middle, and high school. And I saw how nobody — not a single special education teacher, not a single teacher’s aide, let alone any of the regular teachers in which some of these students have “inclusion” — has the foggiest idea what to do with these children. I  saw them try to interact (and discipline) autistic children as though they were simply neurotypical children with behavior problems. But this is exactly the wrong way to think of them. Given what we have learned about autistic people, given what we know about why they behave so differently from neurotypicals, one is bound to fail to teach proper behaviors, let alone provide them with the rest of the education they need to receive at their schools. As a result, I have seen in the high schools extremely intelligent young men and women who have not received nearly the education they could have received.

At the elementary school, there was about a dozen students, most of whom had autism. When they would “misbehave,” they would be threatened with moving colors, etc. that are typically used in the schools. These tactics clearly had no effect whatsoever on their behaviors, as they didn’t mean anything to the children. Abstract symbolism don’t mean much to us. Yes, there were picture cards for the students, but the use of those picture cards seemed to be limited at best. Picture cards are necessary for autistic children, but they have to be used constantly and consistently. But more than that, threats upset autistic children, shutting them down, pushing them toward having breakdowns. If you want to change an autistic child’s behavior, you have to use logic and reason — and use it repeatedly. Also, if they are doing something to another child, you have to get them to empathize with the other child to get them to stop what they are doing.

For example, one of the children was poking another in the back. The one being poked was just sitting there and taking it (probably having gotten used to her poking him all the time), but he was obviously annoyed, as anyone would be. I got down on the floor and said to her, “Would you like it if someone poked you like that? Would you like it if someone poked you like that? Would you like it if someone poked you like that?” I tried to get her attention, repeated her name, and kept asking the question. After a while, she finally said, “No.” I said, “Well then, you shouldn’t do that to him if you wouldn’t like it.” And she stopped. And she never did it again — at least, the day I was there.

I was in that class with the special ed teacher’s aide. During recess, the aide asked me, “How on earth are you reaching these kids?” She had never seen anyone change their behaviors so quickly before. Of course, there’s nothing I was doing that I haven’t learned from simply doing research on autism and some of the behavior modifications used. It is nothing anyone out there couldn’t do or learn about. So I told her what I was doing and why I was doing it. It was a complete revelation to her. I gave a brief explanation of what is happening with children with autism, why they acted as they did, etc., which of course ties back in with how to properly teach proper behavior to autistic children.

That same day, toward the end of the day, the same girl got upset and ran to the other side of the room. She threw a tissue box and tried to hide among the pillows in the corner. I went over to her and told her she needed to pick up the tissue box. She of course just withdrew. I had noticed earlier that she liked playing a computer game with a gorilla, so I grabbed a toy gorilla and started talking to her through the gorilla. The gorilla asked her if she wanted to come back to story time and if she would pick up the tissue box. She smiled at me, nodded, and stood up, picked up the tissue box and put it away, and then walked over and sat with the other students and listened to the story. Why did this work? Autistic people are object-oriented, she liked the gorilla game, and I got her to focus on an object she liked and had it talk to her. In other words, I successfully communicated with an autistic child. But few truly understand how to do this.

At one of the high schools at which I used to sub, I taught in all three of the special education classes, which range from classes with students so severely autistic that they are nonverbal and can just barely function at all to talkative, intelligent, humorous students who I wonder why they are not in inclusion classes. There are students who are clearly only in school just to give their parents a break — they won’t be learning anything, and whatever they learn, the won’t be applying outside of school, as they are not going to be holding any sort of job. But those aren’t the students I want to talk about.

The students I want to talk about are those who are together in a special education class that is designed to teach little more than a handful of practical living skills, but who really ought to be in a regular class, because they are definitely intelligent enough to do the work. Many of these students are in fact probably more intelligent than the vast majority of regular students. Why, then, are they not in regular classes? It is because of their “behavioral problems” that have followed them throughout their school years. These have been lucky enough to be identified as autistic, so their behavioral problems were sequestered away in the special education classes rather than the behavioral units (more on that later), but as a result, they have also been sequestered away from a real education. And it is all because nobody understands how to properly modify their behaviors. By the time they reach high school, they haven’t been taught how to properly interact with anyone other than other autistic people — and a dozen frustrated teachers. As a result, we have an army of highly intelligent people who have received no education to speak of and thus will not be able to live up to their full potential. The person who could have been the next Newton may be that socially awkward, “slow” young man or woman who talks funny busing your table before you sit down at the restaurant. That is all they are really being taught to do, and that is a real shame. And it is all because nobody understands how to raise autistic children to be functioning adults.

But, as troublesome as all of this should be to you, I promise you that things can be far, far worse. I know, because I have seen it.

One day I was assigned to a middle school behavioral unit. If you know anything at all about the regular behavior of middle school students, you can only imagine how over-the-top ridiculously bad the behavior of these students had to have been to get them in a behavioral unit. We are talking about repeat offender fighters, kids who take offense at everything and anything and who are convinced that beating the crap out of people is the solution to every problem. In here was one student who — other than cursing like a sailor at the drop of a hat — quietly did all of his school work and played on the computer. He wanted to be left alone to do what he was doing, but of course none of the other students would allow that to happen. They would harass him, turn off his computer, do anything they could to get him riled up and curse at them. A girl in the class, however, would first harass him until he called her a “bitch,” at which point she would get mad and hit him. She hit him four times before she was taken away (by the other adult in the classroom with me the whole time, since there is supposed to be at least two people in there most of the time) to be suspended.

However, there was a time when the other adult had to take three other students away, leaving me with this student and another. The constantly harassed student suddenly came up and started talking to me. The first thing I noticed is that he had an odd way of speaking (odd if you’re not autistic) and seemed a bit awkward. It was obvious to me that he was somewhere on the autism spectrum. He started complaining about the other kids, and I said that if he didn’t like these kids, why was he doing things to get in the behavioral unit? His answer?

“I’ve been in the behavioral unit since I was in first grade. I was put in it after I bit my teacher. I’ve been in the behavioral unit in first grade and second grade and third grade and fourth grade and fifth grade and now sixth grade.”

“You’ve been in the behavioral unit all this time because you bit a teacher in first grade?”

“Well, no . . .”

Well, of course not. But from what I had been witnessing — and what I would witness in the last hour of the day — convinced me that, in a real sense, he was in fact in behavioral units since first grade because he was in one in first grade.

Here is the probable scenario. This kid was/is an undiagnosed autistic. Maybe Asperger’s, but definitely on the spectrum. And definitely prone to meltdowns. His odd behaviors were probably enough of a turn off for his fellow students and teachers, but no doubt they considered his meltdowns to be mere temper tantrums. Meltdowns occur when a stressful situation — or series of them — becomes too much. Meltdowns can appear to be very violent — many autistics will also engage in self-harm, especially if they are not allowed an outlet for their frustration. It would not surprise me if more than a few people have gotten bitten by an autistic child during a meltdown if the adult was intervening wrong. And if the child is undiagnosed, he’s not an autistic child who needs help (but who won’t get the right kind of help because almost nobody understands how to help them), but a serious behavioral problem. So we get a child who gets easily stressed having a meltdown, a teacher who is stressed dealing with it wrong, and therefore get a bitten teacher and a first grader sent off to the behavioral unit.

Of course, the kind of children in the behavioral unit are anything but understanding and kind. They are cruel, bullies, a certain percent are sociopathic, and autistic children are weird and seem to be the perfect victims. So they get picked on, the stress results in violent meltdowns, and the child remains in the behavioral unit. Year after year after year. And the problem is never solved, but is in fact worsened by such an environment.

That is the situation this poor child is in. He’s been placed in a never-ending Hell, all because he’s an undiagnosed autistic. His fate? He has been taken away to the mental hospital twice. And based on his conversation with me, he is very, very, very angry.

So after being picked on all day, he was told at the end of the day to go outside and get his backpack. He didn’t want to, but I talked him into it (which got me cursed out a few times for my effort). He stepped out to see his papers being blown away, the girl who was being suspended for hitting him all day having apparently dumped out his things. And that’s when the meltdown occurred. He began picking up desks and throwing them. Keep in mind that he’s eleven. All of the desks and chairs ended up in a pile in the middle of the room. It was a slow-motion rage — oddly controlled, as he went out of his way to make sure he never threw a chair or desk in such a way that I would be hit by one. And I was close to him the entire time, trying to talk him back.

I never did talk him back. The bell rang, the teachers told me they would take care of it, and I had to pick up my own children from daycare and school. When I walked away, he was outside the portable, banging his head against the metal side. I glanced back one last time to see a chair flying out of the door.

Without a diagnosis of autism, and without parents like us, Daniel could have been that child. That is a sad, terrifying, and infuriating thought.

Empathy, Morality, and Autism

While I generally disagree with those who claim that people with autism do not have empathy, when it comes to moral decision-making, empathy not only may not be necessary but, according to Jesse Prinz, may in fact get in the way.

I have read in various places that people on the spectrum tend to be very moral. At the same time, people have tended to think of empathy and morality as being closely related. How can one be highly moral and have low empathy? That was the conundrum those who argued that autistic have low empathy had to try to work out.

While I do not agree that people with autism lack empathy, I would agree that we/they have impaired empathy. Why that is is up for debate, though I’m of the opinion that a too-intense feeling drives us away from people, impairing its proper development. It may also be possible that we engage in some degree of avoidance so we are not overwhelmed by others’ feelings.

But if Jesse Prinz is right, we might have an explanation for why it is people on the spectrum tend to be extremely moral in their actions. If empathy is not getting in the way of our moral decision-making, that would make our decisions more moral.

Of course, this separation between empathy and moral decision-making is likely to be read as cold. But if the highly empathetic morality of the inquisitioners is any indication, perhaps we need more cold morality and less warm morality in the world.

Autism is Literally Not Self-Centered

fMRI scans show striking differences between people with autism and neurotypicals.

Most notably, neurotypicals’ “thoughts of social interaction clearly included activation indicating a representation of the “self,” manifested in the brain’s posterior midline regions. However, the self-related activation was near absent in the autism group.” That is to say, the autistics did not put themselves into the given scenario. Say “hug” to a neurotypical, and they will imagine themselves getting a hug from or hugging someone; say “hug” to an autistic, and they will think of the dictionary definition of the word or envision others hugging.

This actually goes along with much of what I have written about on this blog about people on the spectrum being more external-focused. We think more about objects and ideas rather than people, because we don’t think that much about ourselves. This also makes sense of the fact that solipsists are the mental opposites of autistics; solipsists cannot differentiate the world from themselves, while autistics radically differentiate the world from themselves. At its most extreme, the latter is outright debilitating. At the same time, solipsism at its most extreme is the person so hyper-empathetic that you cannot reason with them at all. Everything is based on their feelings, or nothing.

Thus, while many people accuse those on the high functioning end of the spectrum of being self-absorbed, we can see from this research that the opposite is literally true. We don’t think of ourselves at all. Or rarely. But because we don’t think of ourselves, we don’t think that much about others, either — at least, to the degree that one has to think of oneself to think of and about others. We are great with objects, and thus we tend to gravitate toward things like math, programming, engineering, and the sciences. Those of us interested in the social sciences tend to gravitate toward things like agent-based modeling.

Why this pattern of thinking comes about is what we need to try to understand.