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.

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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.

What Kind of Blog Is This?

Most of the blogs you’re going to find out there on autism are going to be by parents of autistic children. Parents who are not, themselves, on the spectrum. For your average parent who is not on the spectrum but who has a child on the spectrum, such blogs are useful and even necessary, from an emotional standpoint.

But I would hope that many of those same parents would come by this blog and read things from my perspective as an autistic father with an autistic son. You’re not going to get a lot of emotional satisfaction here at my blog, I’m afraid. That’s just not my thing (which shouldn’t surprise you if you have an autistic child). What you will find here, though, is a combination of my own experiences as someone on the spectrum, my experiences as a father of an autistic child, my experiences as a father of two children not on the spectrum (but who have a few features), my experiences as a husband of a wife not on the spectrum, and my research and (hopefully) insights into that research on autism.

That means you’re probably going to find as many discussions of oxytocin as my autistic son’s obsessions with sharks (especially basking sharks of late) and Star Wars (most especially Storm Troopers). In fact, in the area of shark obsessions, he is particularly obsessed with the fact that people eat shark fin soup. He is very upset by this fact and keeps asking me why people who eat shark fin soup want to hurt nature. He doesn’t understand why anyone would ever want to harm a shark.

If there is a problem with this blog, it will be that I will tend to follow my own obsessions. Combine that with the way my memory works, where I have a tendency to forget a great many things when I need to remember them (including ideas for blog posts, all too often), and it’s more likely you’ll learn about the glutamine-glutamate cycle than Daniels’ dental obsession. But I do promise to try.

Also, if you have any specific questions you would like me to answer in a future post, please feel free to ask me!

Questions, Questions, Questions!

Daniel loves to ask lots of questions. Especially when we’re in the van. That’s when there is an almost constant barrage of questions.

“Why are basking sharks called basking sharks?”

“Do tiger sharks like people?”

“What’s the world’s fastest shark?”

You may have guessed that Daniel’s into sharks. As was I when I was about his age, perhaps a bit older. So when I noticed he was getting more and more and more into sharks, I got him a Sharks of the World, which I will have to admit was about 30% for me. Past obsessions are really never past.

Daniel never quite got as into dinosaurs as I did, but he’s definitely as into sharks as I was. And he’s also into plants. He has several plants filling his window sill, much as I did when I was, again, a little older than him. It seems that, having skipped dinosaurs, Daniel has followed my path of interests when I was a child. Yet, I’ve neither encouraged nor discouraged his obsessions (not that you can do that with someone who is autistic anyway). Are autistic obsessions heritable?

Asking questions about one’s obsessions–or sharing one’s obsessions with others, if one is confident enough in one’s knowledge–is a major way we on the spectrum connect with others. I happen to still remember a great deal about sharks, so when Daniel asks questions, I usually have answers. Also, there’s the internet, which acts as a bonding center. (Speaking of which, I’ll need to find time today to look up facts on basking sharks, since he’s been asking me to do that with him.)

Yet, as you grow older, you become more and more aware of the fact that asking incessant questions and giving lectures on your latest obsession is generally not socially acceptable. Even if you attend a conference on your obsession, it turns out that between sessions, most people want to chit-chat and gossip rather than to continue discussing the cool new ideas you just learned about. So what do you do? You mostly learn to just shut up. And then you’re in a situation where you desperately want to talk to people (about your favored topic), but you know nobody wants to hear about it, so you just end up standing around, awkwardly making people feel uncomfortable.

Think about what it would be like for you if, every time you came home from work, you wanted to talk about work, and your spouse told you that he or she didn’t want to hear about work, that it gets on their nerves every time you “obsessed” about work. After a while, you would just come home and not say much of anything. But since work is 8 hours of your day, it’s a major set of events in your life, and you want to talk to someone else about your experiences and problems and triumphs, so where does that leave you? What kind of relationship would you end up having with your spouse?

I don’t think we would call the spouse who wants to talk about his or her day at work “socially awkward.” Wouldn’t we instead blame the one who doesn’t want to hear about the other’s workday?

To someone on the spectrum, one’s obsessions are one’s “workday.” It’s what we think about, it’s what we care about, it’s what dominates our days and our thinking and likely whatever work we do (officially or unofficially). So while I couldn’t care less about Minecraft, I provide at least a little time to listen and look at what Daniel did. And not just Daniel of course–I also have two other children, and they (along with Daniel) love to draw or (in the case of the youngest, Dylan, and Daniel both) ask incessant questions about Star Wars characters.

We all do these things, but most people seem more willing to indulge in stories about how the workday went, but not in dissertations on sharks, orchids, or self-organizing network processes. If we were so indulged, you may find us to be a little less socially awkward.

A Personal Tale of How the Intense World Feels from the Inside

I think there is little doubt that autism runs in my family, and that the kind of autism we have is best described by the intense world theory. The dominance of positive feedback in our neural systems goes a long way toward explaining a large number of traits, including my being mildly bipolar. Another thing that happens to me on occasion also now makes sense in the light of the intense world theory. Every so often my skin becomes hypersensitive. Some times it is more intense than others. Often, my joints and muscles ache and my mind is racing — I cannot remain asleep for more than a half hour at a time — and I become ravenously hungry, but then be able to satiate that hunger with, say, a handful of chips. Everything moves at top speed in me. After a few days, it will subside.

This makes perfect sense with the intense world theory of autism. When positive feedback dominates, the system in question cycles. This is true of any scale free network process, including neural networks. There are times when I don’t feel very much; but most of the time the cycles are subtle enough that they are not all that noticeable. However, sometimes those cycles run amok, and the intensity increases and increases. There is eventually a crash back to normal, but the period of intensity can be a bit much.

When Your Work Is Who You Are

My wife has observed that my work is deeply intertwined with my identity. It was not the first time she observed it, but sometimes the Nth time you hear something is when you start to think about it.

I hadn’t really thought about it before because she was and is right. It seems so natural to me. I am a poet/playwright/interdisciplinary scholar/spontaneous order theorist. When I wake, those things are on my mind; they are on my mind throughout the day; they are on my mind when I go to sleep. My mind is always active, thinking about my various projects.

Asperger’s has been called the “Little Professor Syndrome,” and I certainly fit that description. When I was obsessed with dinosaurs, I could have held my own with a paleontologist; when I was obsessed with sharks, I learned everything I could find on sharks; when I was obsessed with plants — and later narrowed that obsession to orchids — I learned everything I could find on plants and, particularly, orchids. That obsession later turned into molecular biology in college, then economics, then quantum physics (at least, to the degree one can learn about it without math), then chaos theory and complexity, then fiction writing, then poetry, then play writing. The older I have gotten, though, the more I have retained past interests. I remain curious about molecular biology, and I often think with the concepts of biology; I have increased my interest in economics, combining my interest in complexity with economics into Austrian economics and spontaneous order theory; I still write plays and poems.

One of my more recent obsessions is learning about autism. When I learned my son had autism, I did the autistic thing and became obsessed with the topic and learned everything I could about it. My familiarity with molecular biology and neurobiology helped. It was in dong this research that I learned I had Asperger’s.

It turns out that those with Asperger’s deeply identify with the work they do, with the work with which they are obsessed.

If the person with autism can find a place that will indulge his obsessions, he will be a great worker and will do great work. If the person with autism cannot find such a place, he won’t allow that job to interfere with his “real” work. One can perhaps imagine what the outcome of that is likely to be.

For autistics with advanced degrees, like me, the logical place to work is a university. And if universities were primarily interested in research, scholarship, and teaching, they would be the ideal place for autistics. Unfortunately, universities are primarily interested in more fully developing their bureaucracies, playing university politics, and engaging in all sorts of social games at which autistics are terrible. If universities were places where a professor could see that something was not working, and the next semester change the way he taught classes based on his observations of what worked and what did not, they would be ideal places for autistics. However, universities are now places where professors are pressured into teaching the same way as everyone else, no matter what the educational outcomes may be.

It seems, then, that there are no places to support people with autism. There is no institutional support; the institutions we have are structurally opposed to both the strengths and weaknesses of autistics, while thoroughly supportive of both the strengths and weaknesses of neurotypicals.

Worse, because people like me are so personally identified with their work that that there is little differentiation between the work and person (please note I said “the work” and not the ideas, as particular ideas will be chucked if they prove not to work out), we tend to take it quite personally that nobody wants us or wants us to do what we are good at. We resent the fact that we cannot make a living being who we are, because of the prejudice against us built into the institutional structures of society. I do not know if there was ever a time when things were better for those with autism; however, I suspect that before the growth of bureaucracy as a fundamental institution in all areas of life, life for high-functioning autistics, at least, was much easier.

Learning to Act Human, Part II

After I learned my son had autism, I learned that I have Asperger’s Syndrome, and so I have actually taken it upon myself to read some things that might help me.

One book I have come across is the Asperger’s Syndrome Workplaces Survival Guide. The first page and a half pretty much described my work history: problems keeping a job over the long term, problems with the fact that I actually want to get my work done and don’t want to be bothered with all this nonsense that seems to fill the work day and prevents me from getting anything done, problems with the fact that I’m not all that social, problems with the fact that (until I became aware of it) I would sometimes say inappropriate things. The author asks the question all of us on the spectrum ask: “What is more important: chatting in the lunch room or getting your work done?” People on the autism spectrum (apparently mistakenly) think it is the latter. Worse, those with AS can appear to be rude, hard to get along with, or bullheaded, when in fact none of these are true. Those with AS don’t have the same internal censors — we have to learn those. We are easy to get along with; we may just not understand social cues we haven’t consciously learned yet. We aren’t bullheaded; we are open-minded and adjust what we believe based on facts and information — we just insist you provide facts and information.

The book is all about helping those with AS understand what is expected of them, to learn how to navigate the workplace. One could ask, “Why is it I have to do all the adjusting?” Well, because the neurotypicals offer most of the jobs available. More, even if you are entrepreneurial, you will still have to interact with neurotypical people. At the same time, a very high percentage of people with AS have college degrees, including graduate degrees. Businesses are missing out on a huge pool of talent because they are excluding a lot of people just because they “don’t get along” with others — when in fact it’s not that they don’t get along, but rather that they just want to get their work done. Businesses are too often getting second best people because the first best don’t have great social skills. And — as I can certainly attest — those with AS are as a result misallocated human resources.

Another book I ran across is The Partner’s Guide to Asperger’s Syndrome. I read the Foreword, and (though I subscribe to the Intense World Theory of AS and autism — at least for my son and me — rather than the less-competent-Theory-of-Mind model presented in the book) I recognized a great deal about me as a husband and father there. In short, everything I read about AS behavior and the social consequences of those behaviors has been a mirror. There is practically no doubt in my mind I have AS. It explains many of my actions, my thinking, my social interactions, my attitudes, etc. The good thing is that in knowing this about myself, I can actually know what to do to fit in better. I have done so over time as it is, without knowing I have AS. When people are bold enough (or asshole enough, depending on their attitudes) to point out my eyes won’t focus on them or that I primarily look at their mouths when I talk to them (leading me to working on looking people in the eyes — a real cognitive effort, I assure you) or that I cannot engage in small talk or that I sometimes say inappropriate things (which I have gotten much better about, being made conscious of it), I can change those things.

So now you know why I’ve acted weird around you, if you’ve ever gotten to interact with me personally. Just remember: if I’m working, for the love of God, don’t interrupt me! 🙂