Five Misunderstandings About Autism

I am sometimes overwhelmed by the level of misunderstanding about autism prevalent not just in the general population, but with doctors and even parents of autistic children. So I thought I would provide answers to five misconceptions people have about people on the autism spectrum.

1. Yes, we do like to be around people.

The fact that we have social anxiety does not mean we don’t like to be around people, or that we won’t do things that involve groups of people. When I told my Aunt Cindy I had Asperger’s and that I suspected her father also had Asperger’s, she objected that he went to church and was a member of the Audubon Society (coincidentally, I recently read somewhere that people with autism are particularly good at bird spotting). The fact that he was involved in a social group or two does not prove he did not have Asperger’s. The fact that on the very day I was born, he discovered the nesting site of the upland sandpiper in South Bend, IN (when most grandparents would have been at the hospital where their daughter was giving birth to their grandson), suggests he probably did have Asperger’s. My maternal grandfather was not particularly social, and the fact that he was a member of a club and a church doesn’t mean he was particularly social. But neither does the fact that he likely had Asperger’s mean he wasn’t social, either. And the same is true of me. I was not only a member of several clubs in high school and college—I was elected president of the Association of Undergraduate Geneticists (AUG) at WKU. But I am definitely on the autism spectrum.

  1. If we’re verbal, we will talk—and even give speeches

When my wife and I gave a talk on our experience with autism, a man in the audience was curious how I could stand in front of a large group and talk. Well, standing in front of a large group and talking about something about which I am very interested is in fact pretty easy for me. In fact, you may not be able to get me to shut up. I am not dealing with people as people, but as an audience; I am not interacting personally, but rather discussing something I want to discuss. There is no small talk involved; there are few if any emotions involved. But when I go with my wife to our bimonthly support group at The Warren Center, I am extremely anxious. I have to chit-chat with people, I am faced with some pretty raw emotions at times from people having a hard time with what they and their children are going through, etc. But if someone asks me a question and I am in the position to talk about what I know about autism, my anxiety tends to dissipate. I can focus on the topic, and thus I am in a more comfortable place.

  1. We do like to be social, and we do want to be invited places

I have also learned to force myself to do social things even when I don’t want to do them. Again, it’s not that we don’t want to ever do anything social; rather, it is that we don’t want to do social things all that often. Sometimes I’m in the mood to hang out with a bunch of friends. Often, I’m not. But I learned that I had to agree to hang out when I really didn’t want to so I would be invited to hang out when I did really want to. That makes me appear to be more social than I really am; in other words, I act more social than I want to act. And I do so to get invited places when I want to go, not because I feel any social pressure. You cannot use social pressure on me to get me to do anything; that is the very last thing that will work on me.

  1. We can (sometimes) look people in the eye

Looking people in the eye is a complicated issue for people on the spectrum. Neurotypical people naturally look people in the eye, because their eyes track the eyes of other people the vast majority of the time. Autistic people are more decentralized in the way their eyes scan, meaning we look at everything equally. What people need to understand is that there is a range involved among autistics, meaning there are those who are severely autistic who can never look someone in the eye and there are people with Asperger’s who have trained themselves to be more attentive about looking people in the eye. While I have learned over the years to look people in the eye when I talk to them, it is not my preference. But I also understand it makes people uncomfortable if I don’t. And that can create problems for me. I used to look at people’s mouths, and I still often do. But I had several people complain about that and demand I look them in the eye. But to do so means I am consciously thinking about the fact that I need to look that person in the eyes. Often, when I am in a meeting, I will look at my notepad and generally avoid looking at anyone. But if I speak or am addressed, I will make the mental effort to look at the person. But it is a mental effort to do so. And it means you don’t have my full attention.

  1. We are creative and imaginative

I have had people express surprise that I am a poet. I’m not sure why people don’t think someone with autism can be a poet. Craig Nicholls, the singer/songwriter of The Vines, and Courtney Love both have Asperger’s, and they write songs. So yes, it is possible to have autism and to be a poet. Perhaps it is because people with autism tend to be literal in their understanding of language; but in my case, that tendency to be literal with language has resulted in an interest in metaphors and other figures of speech. I often find what neurotypicals do to be of interest for their very oddity to me. And that strangeness of language use is particularly useful for being a poet. So despite what some autism experts have claimed, autistics can be extremely creative, very inventive and imaginative. I suspect a great many artists and inventors, and scientists especially, were and are on the spectrum.

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Supporting Your Autistic Child at School

With school starting at the end of August, those of us with school-aged children on the spectrum get to deal with all kinds of issues surrounding accommodations, i.e.p.s and son on. And in this more often than not the schools act like they are your adversary than your partner in educating your child. Only if you are constantly on them, strict with them, and insistent will teachers and administrators at least give the appearance they are doing what they ought to be doing.

This isn’t to say that you won’t occasionally luck into a good teacher and SpEd teachers, and even a supportive administration (which is vital to there being good teachers and Special Education teachers). There will be. But that’s not most parents’ experience. If you have an autistic child, most of the time you will not find a great deal of support.

This is why it’s important to get an advocate for your child. There are professional advocates for SpEd students and their parents who can go with you to your school for their annual meetings and to help you address the kinds of problems that arise from the fact that teachers and administrators don’t understand autism in the least. And this is true even of the SpEd teachers. I’ve been a substitute teacher for SpEd classes, and I was amazed that they were amazed at how well the autistic children reacted to me and behaved for me. Which is telling.

One problem is that, for many with autism, it’s an invisible disability. You won’t look at me or at Daniel and say, “He must be autistic.” Autism gets expressed in behaviors and thinking. And we have a tendency to say that we can help whatever behaviors we exhibit–which is only partly true. And schools aren’t designed to deal with anyone who isn’t perfectly normal in their behaviors, is willing and able to sit still for hours, and isn’t of average I.Q. and generally uncreative and unimaginative. (In other words, they aren’t designed at all for anyone even marginally on the spectrum.)

As my wife and I have learned, you have to fight the schools every step of the way. And you have to be strict and insistent. Only then will your child get what they need from your schools.

Yes, We Autistics Do Have Theory of Mind

One of the theories of autism is that those on the spectrum do not have a Theory of Mind. However, as I have read more and more examples of the evidence that supposedly supports that view, I have to come to the conclusion that it is the neurotypicals who believe this who don’t have a proper Theory of Mind.

If you have Theory of Mind (ToM), you believe that others have a mind like yours. Please note that anyone who has ToM believe others have a mind like THEIRS. If you’re neurotypical, you believe others have a mind like your mind, and  we with ASD believe others have a mind like our mind. However, we are both wrong. We are both overgeneralizing.

One can view the human ToM as an evolving history of ToM. People believe that those in our tribe have minds, but people in other tribes do not. Those in our extended culture have minds, but others do not—or theirs is not as developed. Read some of the work by European scholars prior to the 20th century, and you will see a great deal of ink spilled on the “fact” that primitive peoples do not have minds like the more advanced Europeans. This, of course, is false. But it took a long time for people to come to realize this—and there are those who still do not believe it.

More recently, we have come to understand that animals have minds as well, even if they are not as complex—or at least the same—as human minds. We moved from treating animals as automata to treating them as being vaguely aware to treating them as having varying kinds of consciousness.

It seems that with the theory that ASD is a problem with having ToM we have another version of the above. The problem is that it’s working both ways. Since people with ASD are treating everyone as though they have the same kinds of minds as them, and neurotypicals don’t recognize themselves in the way they are being treated by those with ASD, the theory (developed by neurotypicals studying ASD) that ASD is a ToM deficit emerges. The problem is that each side is looking at the other and thinking, “What’s wrong with them?” The problem is that both are wrong to think that way.

What I am suggesting, then, is that we have two different groups—neurotypicals and autistics (including Asperger’s)—with two different kinds of minds, each theorizing everyone has the same kind of mind they have, and coming into conflict. Many of the comments made by autistics that are interpreted by neurotypicals as rude or arrogant are perfectly well understood for exactly what they are by fellow autistics. In the same way, things that seem bizarre or a waste of time to autistics (like small talk) are perfectly well understood by neurotypicals for what they are by other neurotypicals.

Given that neurotypicals far outnumber autistics, it is the latter who have had to do most of the adjusting. However, as the number of people recognized as being autistic seems to be rising, the adjustments might soon have to be more mutual. And if neurotypicals don’t want to miss out on all of the benefits that come with hiring autistics, the adjustments will have to become more mutual. Those neuroptypicals who figure this out will be the ones profiting most.

Hugs Help

Several years ago I came up with the idea that we need to hug Daniel more, and that we need to hug him for a good, long time when we do hug him.

I came up with this idea after I read that autistic children who are given nasal injections of oxytocin became more social for a while. Oxytocin is known as the “love hormone,” because it’s associated with feelings of love.

It has been shown that many autistic children have low oxytocin levels. When you increase oxytocin levels,  many of their social behaviors improve. Since oxytocin is made naturally in response to skin-on-skin touch, I began making sure I held and hugged Daniel more—which has had a remarkably positive effect. We also noticed that if we hug Daniel when he is most upset, he calms down.

Of course, hugging an autistic child isn’t necessarily the easiest thing in the world to do. It’s not uncommon for autistic children to resist being touched, let alone hugged. But of course, if you don’t hug or touch them, you won’t be able to build up their oxytocin, and that means the effects of low oxytocin will continue. So it’s worth the effort to get those hugs in. And the more you hug them, the more they’ll let themselves be hugged.

The key is that you have skin-to-skin contact, and the hugs need to last at least 20 seconds, as that is what stimulates oxytocin production. Even holding hands for more than 20 seconds will get the oxytocin flowing.

Daniel’s social anxieties are fairly mild. And Daniel is increasingly likely to look at you when you talk to him. I am convinced hugging him more has helped. I have seen the behavioral changes. He will always have them to a certain degree, but if Daniel can overcome some of these social issues, while retaining the benefits of autism, Daniel should have a great life. Hugs definitely help.

The Intense World Theory: The Technical Version

Henry Markram and his wife developed their Intense World Theory of autism after they discovered that in the mouse models they were studying, the inhibitory cells (which create negative feedback) worked normally, but the excitatory cells (which create positive feedback) “responded nearly twice as strongly as normal—and they were hyper-connected,” and “were hyperactive, which isn’t necessarily a defect: A more responsive, better-connected network learns faster.” In other words, autistic people with hyper-connected, hyperactive excitatory cells learn too quickly, and they learn irreversibly.

Which can be a problem—especially when what they are learning is a fear response.

The Markrams also discovered that autistic brains have more minicolumns, “which can be seen as the brain’s microprocessors.” Coincidentally, “extra minicolumns have been found in autopsies of scientists who were not known to be autistic, suggesting that this brain organization can appear without social problems and alongside exceptional intelligence.”

This suggests a kind of continuum. It seems that your “average” extremely smart person has enough extra minicolumns, enough of a ramped-up brain, to become a scientist (and, likely, an artist, inventor, etc.). Slightly more, and you might develop Asperger’s Syndrome. Slightly more, and you develop autism. This would suggest, as the article does, that brilliance in those autistics who are also savants is a feature, not a bug.

Many autistics develop very advanced cognitive abilities, including those necessary to be good at math, music, and science. In fact, “Mathematics, musical virtuosity, and scientific achievement all require understanding and playing with systems, patterns, and structure. Both autistic people and their family members are over-represented in these fields, which suggests genetic influences.” My own proclivities are in “understanding and playing with systems, patterns, and structure” in my scholarly work (on complex network processes) and poetry (formal verse — patterns and structure).

What this suggests is that Daniel is an even more intense version of me. I have many social difficulties precisely because I “feel too much and sense too much.” I am deeply empathetic, and my intensity of feeling is what led to my becoming an artist. I am sensitive to fabrics, to anything touching my wrists or neck, to the textures of foods (spaghetti and fettuccini both taste very different to me because of their very different textures). I experience the world very intensely, and it can be too much at times. If this is my experience, and Daniel is (if Asperger’s is one level, and autism is two) two levels more intense in his feelings and senses, his behaviors make a great deal of sense to me.

More than this, the fact that it is excitatory neurons that are working more also explains quite a bit, if we take a complex systems view. As I mention above, complex systems like the brain have both positive and negative feedback working simultaneously. That is a normal brain. In a brain in which the inhibitory neurons were more active, we would expect to see a brain moving more toward equilibrium — low activity. In a brain in which the excitatory neurons were more active, though, we would expect to see cyclical activity — periods of hyperactivity and mania followed by low energy and depression. Many autistics are also diagnosed with bipolar disorder. Though undiagnosed, I am almost certainly at least mildly bipolar. I have seen Daniel have very low energy and cry and “be sad” for no reason at all; at other times, Daniel is extremely hyper. Fortunately, Daniel rarely crashes into the really sad depressive mode, but he does cycle between low and high energy. This would make perfect sense if his brain were dominated by positive feedback, as the Intense World Theory suggests.

However, this aspect is nowhere mentioned in the article. It seems an important thing to consider, though. But to understand this means one has to take a complex systems perspective. Perhaps further research will show others have in fact made this connection — but if not, I think it’s an important insight that needs to be investigated further.

The good news is that many of Daniel’s social anxieties and repetitive behaviors seem to have been decreasing over time. And his language skills have been improving. Fortunately, while he is clearly autistic, his symptoms could have been much worse.

Having a Son with Autism Can Cause Autism Discoveries

There’s a joke that because scientists have a much higher tendency to be scientists, that that really means that autism causes vaccines (rather than the other way around).

But there is some truth to the idea that being a scientist with an autistic child can lead you into paths of learning you never expected. For some it’s a scientific pathway, for others it’s a pathway to personal discovery, and for some it’s both.

Why does the Intense World Theory of autism make so much sense to me, at least when it comes to my son and me?

For one, there are many similarities between Kai Markram, the son of Henry Markram, the neuroscientist who developed the Intense World Theory (IWT) of autism, and Daniel. Both were precocious babies. Daniel is a bundle of energy. Daniel also alternates between social anxiety around strangers and just running up and hugging strangers.

There are the tantrums—which in Daniel’s case, are fortunately getting better over time, as we continue to expose him to social situations. Daniel also on occasion lines things up, though he has mostly stopped doing that. And he is sometimes very sensitive to sounds — he will sometimes turn off the radio, and he is bothered by applause. We have been fortunate that Daniel is apparently better with the food than Kai was, though. He’ll try most foods, but when he’s made up his mind he likes or dislikes something, that’s the end of it.

Given these similarities, what Henry Markram concluded was very interesting to me. The conclusion that “autistic people take in too much and learn too fast” fits well what I know about Daniel. For example, Daniel, since age 4, understands cause-and-effect and can therefore engage in deductive reasoning.

One day, when Daniel was 4, as we were driving to the local grocery store, we drove by a restaurant with a large number of cars in the parking lot, and Daniel said, “Look, Daddy! They have lots of customers!” We then went to the grocery store, and when we came out, as I was putting Daniel in his car seat, he said to me, “Daddy, we were customers, weren’t we?” My wife, who teaches 1st grade, says her 6-7-year-old students cannot do that.

But this is what really spoke to me, what made me understand that, at least in the case of Daniel, IWT explains a great deal:

The more he [Henry Markram] investigated the idea of autism not as a deficit of memory, emotion and sensation, but an excess, the more he realized how much he himself had in common with his seemingly alien son.

And then there is me. Like Henry Markram, as a small child I wanted to know everything (that hasn’t changed). I did a little better in high school than he did, but not by much, and it was not until my Senior year that I turned things around. Oh, and one of the main predictors of someone having a child with autism? Having a Ph.D. Like me.

Vaccines and Autism

Vaccines have nothing whatsoever to do with autism. Full stop.

I’m not going to spend a lot of time on the issue of vaccines and autism on this blog. I would rather spend time talking about the fact that autism is genetic, that it’s inherited, and the consequences of having autism. I would rather not spend a lot of time on a theory proposed by a fraud with no evidence whatsoever.

Here’s the bottom line:

The mercury that was thought to be involved is no longer in vaccines, and autism rates have continued to climb.

Mercury causes proteins to precipitate out. They do not cause point mutations that we find in all people with autism.

When you point out that there’s no more mercury in vaccines, anti-vaccers tend to move the goal post and argue that it’s the heightened immune response. However, the immune response is lower than with past vaccines, and many of the vaccines have fewer kinds of viruses combined–and autism rates are still climbing.

Our medical institutions have responded to every objection to vaccines, even though there is no medical evidence to back up those claims, and autism rates still climb.

Somehow it hasn’t occurred to people that the changing definitions of autism over the decades, the switch from “mentally retarded” to “autism” in the most severe cases (the rates of mental retardation have gone down at almost the same rate as rates of autism have increased), and improving diagnosis that includes people like me are more than sufficient to explain the increases.