Today, April 2, is internationally known as Autism Awareness Day. I've never really paid much attention to Autism Awareness Day before because, in the past, I've never really known much about autism. Most of what I thought I knew came from depictions of autism in the media, articles on the subject, anecdote, and the very few brief encounters I've had with autistic children. Those unsatisfactory sources led me to envision autism as an unruly, hyperactive child who is completely socially detached, throws violent tantrums, and is more or less mentally handicapped, with parents or caregivers who struggle and grieve trying to deal with them. Some of the information I had come across even suggested that people with autism don't understand that other people are actually alive or conscious, only themselves. They didn't recognize people as people. For whatever reason I never questioned this image of autism for a long time, perhaps because I was too distracted by topics I found more interesting or relevant. I never thought too deeply about what autistic people go though, what life is like from their perspective, or what happens to those kids when they grow up. I was aware of autism, but my awareness was superficial.
To make a long story short, my distorted image of autism was challenged on several fronts some time back. Not strongly, but just enough to get me asking questions and looking for the answers. I learned that autism wasn't at all what I thought it was, and that I had many gross misconceptions about it.
I've learned that autism, at its core, is more or less a social learning disability. Many social skills and abilities that most people take for granted, such as understanding the meaning of someone's facial expressions, don't come naturally to people with autism. Many people with autism struggle with interpreting nonverbal and indirect forms of communication, such as facial expressions, tone of voice, body language, subtext, sarcasm, and figures of speech, though many can learn to master some or all of these. Often, they will take things literally, or at least their first instinct will be to take things literally. Social rules, such as those which determine what is and is not appropriate in a given situation, can also be difficult for an autistic person to grasp. This isn't because they are stupid. It's like being colorblind in a world where everything is color-coded. They just don't naturally see or pick up on these things. Another way to put it is to say that autism is to social skills what dyslexia is to reading. People with autism can often learn how consciously to recognize and interpret some or most of these social rules and cues, but some will find this extremely difficult and make limited progress no matter how hard they try. And while it is possible for someone with autism to become reasonably adept in social situations, for most, social situations are like feeling your way around in the dark in a booby-trapped labyrinth.
Along with the social stuff, autism is characterized by what the DSM refers to as "restricted, repetitive patterns of behavior, interests, or activities". This can include strong, focused, narrow, or obsessive interests or hobbies, adherence to rituals or routines, or repetitive sensory-seeking behaviors (often called "stimming") such as hand flapping, rocking back and forth, finger rubbing, pacing, or any number of other things. Many people with autism are also extremely oversensitive or undersensitive and indifferent to various kinds of stimuli, such as sounds, smells, tastes, textures, heat, cold, pain, and so forth. Too much sensory stimulation can become so overwhelming that it overloads the mind to where it can no longer function and shuts down most or all non-essential functions.
Some forms of autism include delays in speech and communication abilities, others do not. Some autistic people are mentally handicapped, some are of average intelligence, and some are absolutely brilliant. Some hit all of their developmental milestones on time or early, speak and write very well, do well in school, and find themselves leading productive and independent lives. Some can pass as 'normal' perfectly when they want to. And some may require help and care for their whole lives. Autism comes in many varieties and effects each person differently, even those who have the same variety of autism. There is no stereotypical autistic person. But all of them face significant challenges, whether openly or silently, which are not easily understood by those who don't face those same issues.
But, underneath all of the 'symptom' stuff, people with autism are still people. They are not stupid, broken, or "missing pieces" (at least not any more so than the average person). They have feelings, though sometimes those feelings work a bit differently. They have hopes, dreams, and aspirations. They get lonely and want to be loved. They care about others and are every bit as capable of moral and ethical judgement as anyone else. They want to understand the world they live in and themselves, and many are quite a bit more introspective and metacognitive than the average person. There are actually perks that can come with autism, and this is being recognized more and more. Many with high-functioning forms of autism can be very productive and successful, with analytical minds that excel at pattern-recognition, trouble-shooting, and logical thinking. The autistic mind processes and sees things differently than most others do, and this is not a bad thing. Sometimes it's just the perspective needed. Some employers are recognizing this and purposely hiring people with autism for specific jobs.
When I realized I was wrong about autism, and what I thought autism was, I took the time to learn the truth and correct myself. Because, the thing I hear most from the autistic people I've talked to is that other people simply don't understand. They just want people to understand them and what they deal with, and accept them for who they are, differences and all. But the problem with correcting your own errors and learning the truth is, sometimes, you find things you didn't expect to find. Sometimes the rabbit hole goes down further than you thought it did. Or maybe, somewhere in the back of your mind, you knew where it was going, but you didn't really want to believe it. Because it could irrevocably change the way you see everything.
The more time I have spent reading about autism, talking to people with autism, listening to them, and learning, the less it seems like I'm learning about some group of people and their challenges, and the more it seems like I'm looking in a mirror. The more it feels like my life story is being told back to me through the words of countless others. The more I can relate to their struggles. In fact, for the first time in my life, I feel like there are others who really actually get what I go though, and understand the crap that I've dealt with and have rarely talked about with others, since others don't seem to get it.
I haven't come to any conclusions lightly, or without a great deal of scrutiny and review. Especially given the nature of those conclusions. But the more I look at myself, both now and as I was growing up, the more apparent it becomes that I, myself, almost certainly have mild autism – what they would probably have diagnosed as Aspergers Syndrome before the DSM-V mucked with the terminology. I had been very hesitant for some time to say this, especially publicly (I've talked to a few people about it). But as the evidence keeps stacking up I'm no longer able to achieve the level of denial necessary to avoid this conclusion. All of the signs and symptoms are there, and quite clearly. And it makes everything, the past 32 years of my life, and all of the crap I deal with to this day, make much more sense. I've always known there was something different about me. I've always felt like everyone knew something I didn't. Like I was always lagging behind others in everything. Like I was always the "c" of an "a b" conversation. Like even in my closest groups of friends I've mostly been on the periphery, unable to really be on equal footing with others. Now I finally understand why.
Since I keep letting it slip to people, I figure there is no real point at keeping this under wraps anymore. I don't really want to do that anyways. As I've become more aware of what autism really is, what people with autism really deal with, the stigma of the word has dissipated for me. I don't feel ashamed or embarrassed about it. And I don't want it to be an elephant-in-the-room kind of thing that people are afraid to bring up or ask me about (or even joke about in a respectful manner), as if I might get offended by it. Plus, I'm tired of carrying this around and trying to keep it to myself. I'm not looking for attention or sympathy or whatever, but I think it's better to be out in the open and honest about who you really are. So, I'm putting it all out on the table, for better or for worse, come what may.
In past years, Autism Awareness meant to me a passing awareness of someone else's problems. Kind of. Because on some level, I think I suspected. There were clues, and I did notice them, but I wasn't ready to accept them. Now, to me, Autism Awareness means self-awareness. It's amazing how much you can learn about something when you realize you've been living it for 32 years, seeing it from the inside. It's my intention to seek a clinical evaluation as soon as I can afford it, though that might be a while. Probably a year or two. In the mean time, I still want to be open and honest about where I am in all of this. I want to help other people understand and maybe clear up some misconceptions and distorted images, not just for my own benefit, but for the benefit of others too.
Thank you all for taking the time to read this. If anyone has any questions or feels some point needs clarification, please just ask. Thanks.
