Asperger's Syndrome: What it's Like

A lot more is known about Autism Spectrum Disorder (ASD) now than there was for those of us who grew up in the 1970s and 80s. For one, it's actually called ASD, and it's typically regarded that Asperger's Syndrome, which was itself a little-known condition back then, is at the higher-functioning end of the spectrum. Those of us at that end may not even be aware that that's what we have, we've always just been a bit quirky.

Another thing that's been said by ASD experts is that everyone on the spectrum is different. Different strengths, different challenges, different interests, different triggers. Some things are often similar, but the situation with each person is unique. As one expert said, "When people tell me they know someone with autism or Asperger's, I tell them, 'Congratulations, you met one person with autism. What applies to them may not apply to all of them. Each person has to be understood and treated differently."

So, as a person with Asperger's I can tell you about myself, but I've been able to translate my own experience into ways to help people younger than me who are also on the spectrum.

Temperature issues

When I was a baby, my mom and grandma made a point of bundling me up in blankets wherever we went, as moms tend to do, because they didn't want me to get a chill. One day they had me out for a walk in the stroller and they saw that my face was wet. My mom looked at me and said, "Why is his face wet?" My dad said, "He's sweating. Look at all those blankets you have on him! It's not cold out. He's hot!" When they took the blankets off of me, I was fine.

That was the first sign that I'm sensitive to heat. It's less of a problem now that I'm older, but it's still true. There are few things I hate more in the world than being hot. I don't want to go anywhere where it's hot, I don't care if it's Acapulco, Hawaii, or Disney World. Totally pointless. I won't even go outside when it's hot unless I have to. Being hot makes me feel sick and angry. And by hot, I typically mean any sustained temperature above 80. That's even more tolerance than I used to have. My max used to be about 70-72, and even then I had to wear shorts or I'd quickly be sweating. I know others who are similar. A temp of about 75 inside is when things start getting dicey, especially when humidity is involved.

On the flip side, I have a high tolerance for cold. I'd much, much rather be cold than hot. I've woken up in winter when the furnace has broken and it's 50 degrees in the house. I'm much more functional at that temperature than when it's the height of summer and the air conditioning goes out, or when I'm visiting an older person who either doesn't have air, or they won't turn it on, or it's set at 80. That's misery. That situation ensures a short visit. But as a kid, I'd go sledding during Christmas break when it was 15 degrees outside, get my snowsuit totally soaked through and be on the verge of frostbite, and I'd still want to stay outside.

Sensory issues

People with Asperger's or autism tend to have sensory issues, and it can be a mix of things. One is an over-sensitivity to various stimuli, another is sensory processing.

In my case, I had the common problem of being very sensitive to textures. Not liking tags in clothing is so common that companies started putting out t-shirts and underwear with the tags printed on the inside, rather than stitched. You may recall the commercials with Michael Jordan scratching at the tag in his shirt. I don't think he has ASD, given his level of coordination, but it illustrates the common problem.

When I was a kid, I hated scratchy clothes in general, and also tags. I couldn't stand them. My mom wanted them left in my clothes because the care instructions were on there, but I couldn't concentrate at school or sit still in church with these things scratching at my neck, so I'd often tear them out, which would sometimes damage the shirt. It then became a procedure that each year when I got new school clothes, my mom would carefully remove the tags before I wore them, otherwise guaranteed I'd rip those things out.

But it was worse than tags. Some things, I couldn't even take the feeling of the stitching in the shoulders, or the texture of the fabric. I couldn't stand droopy socks. I didn't like anything that bagged, or snagged on anything. Really I didn't like feeling anything on me at all, so what I wore tended to be soft and light, or in winter, fluffy. Wool sweaters or any kind of scratchy sweater tended to be both too warm and too rough, so I opted to be cold. I don't think I've worn a sweater in 20 years.

In terms of processing, as with many others, it can be difficult for me to make eye contact. I know it's important, so I've trained myself to do it, but if it's important for me to listen and respond to things, I tend to look away, taking on the look of someone who is thinking hard about what is being said. This enables me to actually hear and process what I'm hearing. If eye contact is insisted upon, well then I have what is referred to as a processing delay. It could take a couple of seconds, or even ten seconds, for my brain to work through what was said.

Think of it like your smart phone or computer. If you download a small file, and only have one app open, there's little to no delay. But if you're streaming, while also writing, while your email is open, while you're working on designing an image, and then you want to download something, it's going to take some time.

In the same regard, I'm not just looking you in the eye. I'm forcing myself to make steady eye contact with you - because it makes you comfortable - which means I'm looking at your eye color, your hair color, the size of your pores, the mole on your lip, your slightly chapped lips, and the blackhead on the tip of your nose. I'm thinking about all of these things, while also possibly noticing your smell, how loudly or rapidly you're breathing, your accent, and other fine details about you that I can't help but notice. If I look away, possibly at the ceiling or at my feet, or close my eyes, I can actually just concentrate on what you're saying.

Coordination

Some people are klutzy or clumsy. With Asperger's and autism, it's a bit more than that, and there can be different reasons. It was hard for me to learn how to catch. There just didn't seem to be enough time to get my hands where they needed to be and then squeeze to get a ball. My dad would get frustrated in trying to teach me, and gym class was no help. Peer pressure there just made things worse.

What finally helped was training myself with things like balloons, handkerchiefs, or tissues. Anything I could toss in the air that was soft and slow to fall. I had to build skills and reactions where there weren't any.

The same was true, oddly, of falling. I didn't have the natural instinct to put my hands out to stop myself when I fell. Again, I didn't think there was enough time. I'd trip on something and fall right down, sometimes on my face. I had to learn that when I started to lose balance, to immediately put my arms out so I was ready. Over time, I fell less, and coordination grew.

Techniques like that are part of individual coping and training. They don't mean a person isn't intelligent. It just means we need to learn how to do things, and it may take more time, or help in the way of "motor planning skills", but we can actually be fully functional in that area over time.

I found that years later as an adult, when I trained in tai chi and kung fu, the focus there on balance and breaking things down into small movements helped my coordination a great deal.

Memory and learning

I'm told my memory is unusually good. I wouldn't know - from my perspective I've always remembered things pretty well, some things more than others. I can remember details of things from when I was as young as 3 or 4. I can also remember fine details down to exact words of conversations I just overheard. The key seems to be interest. If I'm really interested in something, I want to know all the details of it and everything about it, and I'll more or less remember them. I'll make lists and categorize things even if I do nothing with the list just because I like the exercise of plotting out something like every Avenger to join team, in order through the 1980s. How far can I go from memory? How many covers can I remember? How many details can I remember. Doing that enables me to do other less interesting things, such as reports for work, or years ago, school.

At the same time, sometimes things don't make sense to me because the core concepts one might intuitively know are not a given for me. Kids are always pesky once they can ask "Why?" but I was particularly bad with that. If I couldn't get an answer to something, I would work it over in my mind until I had an acceptable answer. Meanings of words, motivations of characters in films, the workings of international politics or of the human body, I would ponder these things all the time from a young age, partially because I wondered about them, partially because I wasn't doing things like playing baseball because those things were unpleasant.

That aspect of things can be a hindrance, but it can also be a skill. When I'm learning something, I need to know why it is the way it is. When I know why, I can learn the how. In trying to learn that, I often figure out a better way to do things. That's great if you're working on process improvement at your job, but it's very frustrating when you're dealing with say, government, where efficiency and practicality aren't even applicable concepts.

Communication

OCD and ADD are definitely parts of the ASD spectrum, as is anxiety. A common symptom of ASD is when very young children line their blocks or toys up in rows and look at them rather than playing with them in other ways. I didn't usually do that, though I sometimes did, but I did have a problem with wanting things to be just right. If something couldn't be as good as what someone else did, I thought it was garbage - worthless. This made things like art class a problem, because some of the other kids could do a drawing or a clay sculpture and make it look so effortless, while I never seemed to be able to bring what was in my head out into the world. It was rare that I'd bring home an art project for my parents. Sure, we were always told to. I'd usually leave mine in my backpack or throw it away. When my parents, having gone to a parent-teacher conference, asked why they didn't see mine, I might say, "Because it wasn't good enough," or I might just cry, because the entire situation was so overwhelming that I couldn't verbalize what I thought or felt.

For many years, I strove for perfection in all I did, for various reasons, and despite knowing better, I still often do. In order to be perfect, at night instead of going to sleep, anxiety would keep me up as I rehearsed as much of the next school day as possible. Every interaction, with variants. I wanted to know what to say and what to do.

I eventually quit doing that, but to a degree it's a good skill to learn. The writer Dorothy Parker, famous for her quips and one-liners, said that a lot of the secret to brilliant comebacks is to having them ready so they sound spontaneous. I absolutely do that. Before a meeting or presentation, even before any social gathering or social interaction, I'll rehearse it in my head so my lines are ready. That way I won't be stammering or wondering what to say later. That gives me confidence. It also makes it easier for me to do things like maintain eye contact and other social norms, because all I have to do is wait for my cue lines so I can give the responses I've prepared.

However, this isn't foolproof, and a challenge in my career is that I often have to talk to many people at once. Even though I'm a writer, which is a blessedly solitary career, I have to sometimes go to events to talk to small groups of people, or even hundreds of them over the course of a day. Thankfully, there, I can rely on my prepped responses, though the sheer number of interactions and the concentration and energy it takes to get through them can be exhausting.

What's far more difficult is when I'm in a bigger meeting with 5 or more people and I'm asked something I wasn't expecting and I have to improvise. I can do it, but it's like walking a high wire without a net. I can't gauge the reactions of everyone at once, but they're all looking at me. I have to make it up as I go along, and it can be terrifying because I know that when I improvise I have little time to vet out what to say and what not to say, and the longer I talk the worse my judgment becomes.

Know your limitations

Thankfully, experience has taught me what to rely on and what to avoid. It is also crucial to know who you can trust, and be honest with those people. My wife is a key example. She knows that if I'm already tired, and it's hot, and there are a bunch of people around, I'm not going to be at my best. I'm going to be cranky, and while I can probably be okay briefly, it's best not to push it.

At the same time, my friends know that when I'm staring at something or someone, I'm probably trying to learn something about what's going on. Sometimes what I'm trying to figure out might be interesting, sometimes not. It's usually better to let me figure it out, and then if there's something I'm stuck on, I'll ask. Or, we'll get to the key moment, where I say, "Huh," and then I'll tell them what I just learned, which they themselves might not have noticed.

I hope you found this interesting. If you did, two films I suggest watching are the excellent "Little Man Tate," and "A Beautiful Mind." Both of those portray different types of extremes, but they do provide insight into minds that may work differently than yours, but are incredibly fascinating.