Autistics Speaking Day

Note: The following is a repost of something I posted as a note on Facebook at about 2:30 AM last night, so the few of you who know me in real life may have already seen it. I thought it was worth posting here so it could reach a (slightly) wider audience.

As some of you may know, today is Autistics Speaking Day. (Or at least, it was when I started writing this; by the time I finish it and you actually read it, Autistics Speaking Day will be yesterday.) I thought I ought to use this opportunity to share my own experiences with you.

First, the big revelation: I am autistic. Specifically, I have PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified), the most mild condition on the autism spectrum. Some of you may have heard me use the term “Asperger’s syndrome” in reference to my own condition. Asperger’s and PDD-NOS are almost identical (both being mild forms of autism), and Asperger’s is more well-known, so for simplicity’s sake I usually use the term Asperger’s, even though PDD-NOS is my “official” diagnosis.

For those of you who I haven’t previously “come out” to as autistic, this revelation may be a bit of a shock. I certainly don’t fit the stereotypes about autistic people. I can speak fluently. I don’t need help with day-to-day tasks. I’m not withdrawn or antisocial (though I won’t deny that I am rather awkward). I can empathize easily with others. Though I’m skilled in a number of areas, I wouldn’t call myself a savant. But like most stereotypes, the stereotypes about autistic people aren’t necessarily grounded in reality. As many people on the spectrum have pointed out, “if you’ve met one autistic person, you’ve met one autistic person.” This is part of the reason I’m writing this note in the first place: to show that there’s more to autism than the media shows. It’s important for me to point out, though, that in no way do I claim to speak for all autists. My experience with autism is uniquely my own, and another person’s may be completely different. In writing this, I am merely adding one more perspective to the many that exist.

To begin with, let’s talk about what autism is and isn’t. In the neurotypical (IE, non-autistic) world, the most common view of autism is that it’s a debilitating disease that leaves people unable to function on their own or cope with reality. This is not true- at least, not entirely. Autism does cause an enormous amount of difficulty for many people, but this is only one side of the story. There are also many positive, even beautiful, aspects of life with autism, that are overlooked in the wider society. What autism really is is an alternate neurological configuration, a unique manifestation of the human condition, with its own struggles and blessing, tragedies and joys.

Now, what exactly does autism involve? There are a number of symptoms that are associated with autism, and not every autist has all of them. However, there are a few basic traits that characterize autism, all of which have influenced my life in one way or another:

Autism involves acute sensitivity- either physical, emotional, or both.

This is probably the most fundamental characteristic of autism- and the one that is most frequently misunderstood. Many people will tell you that autists lack empathy. For many autists- myself included- this couldn’t be further from the truth. Rather than a lack of empathy, we have an overabundance of it. We are often hyper-sensitive to other people’s feelings, and can pick up on them intuitively. For most autists, this causes them to be overwhelmed in social situations. A friend of mine who is also on the spectrum explained it this way: if someone with unusually strong vision walks into a room full of bright lights, they will be temporarily blinded by it. Likewise, if an autist is in a room full of other people, the empathetic input will often be overwhelming to them and cause them to “shut down”- thus appearing to lack empathy. Since I have a very mild case of autism, this overwhelming only happens to me very rarely- usually when I am dealing with intensely angry people. The neural “static” I get from perceiving their anger is more than I can process, and I go into panic mode. In day-to-day interactions, though, I don’t find my empathy overwhelming at all, and am immensely grateful for the ability to intuitively understand others’ emotions.

In addition to this emotional sensitivity, autists are also often very sensitive to physical stimuli. For people with more severe autism- and even many people with mild autism- this translates to a strong aversion to many sensations, and a need to control one’s sensations through “stims,” or repetitive stimulatory actions such as hand flapping or rocking back and forth. This, however, has not been the case for me. (At least, not for the most part. I do have some tics that could be considered stims, such as twitching my fingers and shoulders and rolling or repeatedly blinking my eyes, but I don’t think these are related to my autism; I also have a mold allergy that causes tics or twitchiness.) The “physical sensitivity” trait has almost entirely bypassed me, but it manifests itself in one unique and meaningful way: an extremely heightened aesthetic sense. I often find myself standing utterly transfixed at things that most people find completely commonplace- the way the brilliant orange of a tree’s leaves in autumn contrasts with the blue of the sky behind it, the way light slants and filters through openings in a storm cloud, the burble and chatter of birds calling back and forth, or the subtle flavors in a spoonful of honey. My ability to notice details like this is a profound source of beauty and inspiration in my life.

My physical and emotional sensitivities also overlap in a unique way. Like several other autists (though not all, or even most), I have synesthesia- a condition in which a stimulus in one sense provokes a response in another. In my case, I perceive personalities and emotions as colors (and in some cases, textures as well), which I refer to as “auras.” My strong sense of empathy coupled with this synesthesia causes me to see a vivid cornucopia of colors whenever I am around other people. I don’t see these colors in the literal sense, the way I would if they were painted on a canvas in front of me- it’s more like how you see a color in a particularly strong memory. Although I know it isn’t actually there, I automatically imagine it in intense detail and can perceive it as clearly as I could if it were real. With people I know very well, these colors form incredibly nuanced and beautiful patterns. To me, synesthesia is one of the most interesting and meaningful aspects of my unique perception of the world.

Autism involves difficulties with socialization.

From a very early age, I have been socially awkward. Although I was never able to put a name to it until I found out I was on the spectrum, I have always felt different from other people in some deep and fundamental way. I think I’ve always known, on some subconscious level (perhaps due to my aforementioned sense of empathy), that the way most people perceive the world is different than the way I do. Don’t get me wrong; I get along very well with most people, and have several circles of friends I feel comfortable interacting with. But even among my friends, I almost always feel like an outsider who has been welcomed in, rather than a true insider. It’s extremely rare for me to find someone with whom I have a true sense of kinship and mutual understanding.

Conversation has always been a source of confusion for me. On the one hand, I love deep, meaningful conversation, and can literally talk for hours about ideas and subjects I care about. On the other hand, small talk and social chit-chat- the type of conversation our society seems to value most- have always presented a stumbling block. I feel alienated in many conversations, not because I’m shy or withdrawn, but simply because I never know what to say. I often end up sitting on the sidelines and listening to other people converse, because I can’t figure out how to integrate myself into the conversation. If the conversation turns to a topic I find meaningful, I can contribute fluently, but until then, I’m pretty much lost.

Although I am now able to express myself very easily and comprehensibly, this was not always the case. When I was much younger (during my first few years of elementary school), I often found it difficult to communicate and make myself understood. (This changed for a number of reasons- partially because I simply matured, and partially because of changes in my physiology that made it much easier to deal with my autism symptoms. More on this later.) For example, I often said or did things that made perfect sense in my mind, but didn’t bother to explain the complex string of reasoning that had gotten me there. To anyone watching, it must have looked completely ridiculous. For example, I remember one moment in my first grade class when my teacher mentioned something about how air particles move to fill in any empty space. We were sitting on the floor at the time, and I thought that a good way to demonstrate this would be to have one person get up at a time, and the people remaining on the floor move in to fill the space they had left. Of course, it never once occurred to me to share this idea with anyone; I just decided to try it out myself. As soon as the girl sitting next to me got up, I quickly moved in and took her seat. To the teacher, it must have looked like I was misbehaving, but in my mind, it was obvious that I was modeling the motion of air molecules!

Many autistic people are also very literal thinkers, which leads to difficulties understanding figurative language. For the most part, this has not been the case for me. I have never had any trouble understanding metaphor, idiom, sarcasm, or any other way words can be used non-literally, and I use such figures of speech frequently. I have a huge love of symbolism, allegory, and surrealism in art and literature, and do not rely on literal interpretation in the slightest when it comes to artistic works. However, there is one way in which the “literal mind” manifests itself in me: I am incapable of lying. It’s not just that I have a moral objection to it (though in many cases I do). Even in situations where it would have little or no moral consequence, I still find it absolutely unthinkable to deliberately utter an untruth. It simply clashes with my worldview.

Autism involves a need for patterns and order.

“Patterns” here just refers to any sort of sequential relationship between things. Logic, language, math, science, and music are all examples of patterns. A large part of being autistic consists of noticing patterns in everything and seeking out patterns that help us understand our world. In my case (as well as many others), this amounts to an intense capacity for logic and reasoning, and for tasks that require intense focus. I always try to base my decisions in reason rather than assumption, and carefully analyze most ideas and situations. I am also very good at deductive reasoning and problem-solving. This is not to say, though, that I am coldly logical or that I have no appreciation for emotion or intuition. As I said before, I am highly emotionally sensitive, and I have a deep appreciation for intuitive art methods like surrealism. To me, logic is a method of understanding the world, and emotion is a method of relating to it and giving it meaning. Art and intuition are ways of expressing our perception of the world. All these perceptual methods build on each other, rather than working against each other.

Order, now, this is a more difficult bit. In many ways, I am hardly a paragon of order. As anyone who has talked to me for more than a minute about politics or society knows, I am incredibly anti-authoritarian and nonconformist. I see no reason that any sort of arbitrary rules or coercive authority should be given the ability to dictate our lives, and I strongly advocate breaking out of social constrictions of any kind. Also, I embrace spontaneity much more than most people I know do, regardless of whether they’re autistic or neurotypical. I love doing things without having a fixed plan or knowing what the outcome will be. I don’t mind when things don’t go according to plan, and I willingly embrace change. But that said, there are more subtle ways a need for order manifests itself in my life. I form habits very easily, and find it very difficult to break them. There are many things I do in the same way every time- not out of a conscious preference, but simply because that is how I’ve always done them. For example, I almost never eat dinner before 6:00; I always use the crosswalks at a four-way intersection instead of cutting diagonally across; I always put my left shoe on before my right one, and so forth. When I have to do them a different way, although I know it ought to be fine, it feels intuitively wrong. I think that on a subconscious level, I find such rituals comforting, even while I know on a conscious level that they don’t really matter.

Autism involves intense, obsessive interest in specific topics.

Most autists have some specific areas of interest (generally referred to as “special interests” or “perseverations”) that they pursue in an intense and passionate manner, finding out every detail that they can. This often leads to an encyclopedic level of knowledge in a specific field. This is probably the autism trait that manifests itself most obviously in my life, and is among the ones that I find most meaningful and influential (second only to my strong sense of empathy). While some autists have a very limited and specialized scope in their interests, mine cover a very wide range. As anyone who knows me can attest, I am immensely passionate about all of them. My drive to investigate them on as deep a level as possible has brought me much joy and greatly increased my understanding of the world. My insatiable thirst for new knowledge is a fundamental part of who I am.

But what about cures for autism?

There have been many possible “cures” (or at least causes) for autism suggested in recent years. For the most part, I don’t know enough about them to address them here. However, there is one that I do have personal experience with, and feel is worth mentioning: the GF/CF (Gluten Free/Casein Free) Diet. Many individuals are unable to digest gluten (a protein found in wheat and some other grains) and casein (a protein found in milk). When these proteins are improperly digested, they break down into compounds that can be highly harmful to the digestive, immune, and nervous systems. There is a hypothesis that autism is caused by damage to the nervous system from these compounds.

As a child, I had several issues with my health: I had a weak immune system and was sick much of the time; I had problems with digestion; and I often had very low energy and was depressed or spaced-out. The rest of my family had many of the same issues. When I was about nine years old, we learned that our symptoms matched those of gluten and casein intolerance. When we stopped eating these foods, the improvements were immediate and remarkable. In addition to the aforementioned health problems going away, the socialization and communication difficulties I had had up to that point greatly abated. For this reason, I believed for a long time that my autism had been caused by my gluten and casein intolerance. (At the time, I still subscribed to the prevailing view that autism is entirely a negative thing, a view I clearly no longer hold.) However, I have recently come to realize that the truth is probably more complicated than that. I still have all the autism traits that I described earlier in this note; they just don’t cause me nearly as much difficulty as they used to. For this reason, I now think that my food intolerances were not the underlying cause of my autism, but exacerbated the difficulties of it. The negative effects that the food I was eating had on my physical and neurological health made it much harder for me to cope with my autistic traits. Now that I am no longer eating the problematic foods, I am able to deal with the difficulties of autism much more easily, and take full advantage of its positive aspects. I don’t think the GF/CF diet is a panacea by any means, but it was helpful for me, and can probably be helpful for many people both on and off the spectrum.

Moving away from specific proposed cures, I’d like to conclude by addressing the issue of “curing” autism in general. This is a topic around which there is a lot of controversy. I won’t pretend to speak for anyone else, on or off the spectrum- everyone is entitled to their own opinion. As for my views, I personally don’t feel that autism can or should be cured. As I said earlier, it is a unique manifestation of the human condition, and I feel it should be respected and valued as such. That said, I do acknowledge the suffering that many autistic individuals have had to go through as a result of their condition. I don’t think the solution is to eliminate autism, though, but to advocate as much as possible for the rights of autistic individuals, and provide them with the supports that they need to live functional, fulfilling lives. We also need to eliminate the bias against autists that exists in our society, and learn to see them as valuable human beings. With the right help and the support of an accepting and caring society, all individuals on the spectrum can live up to their full human potential.

-Lukas