A lot of people come to this blog after they hear of me somewhere as an autistic person, and many might assume that everything I talk about on here, at least everything as relates to disability, is about autism. And as if anything I say about myself as an autistic person will apply to anyone else who happens to be autistic. People also assume their stereotypes about autism apply to me, and it’s very likely they don’t.
First off, in addition to autism, I have general neuropathic or central pain (the source has never been figured out, but it responds very well to neurontin), chronic migraines, trigeminal neuralgia, complex-partial seizures, a movement disorder variously considered catatonic or parkinson-like, asthma, severe reflux (for which professionals keep muttering about fundoplication surgery), very atypical sleep/wake patterns, benign joint hypermobility syndrome (benign means “won’t kill you,” not “painless”), jaw “deformities”, a straight neck with various associated muscle spasms and nerve weirdness, and a slew of other stuff going on. This may sound like a lot of different things, but they’re all in one person. When I talk about myself, I’m not necessarily going to separate one or more of these out, in some cases I can’t. They all have medical terms but they’re all happening in my body. That means when I talk about something about how I work, it may be something totally typical, or it may be related to something else that isn’t really about being autistic.
I use a wheelchair because of stamina issues related to the movement disorder. I know that some television shows have simplified it to being about being autistic. It’s not, except inasfar as the movement disorder itself appears more common in autistic people.
I use a portable keyboard to communicate because of a number of factors. Speech has always been difficult because I am autistic, but I have managed to create passable speech in the past. It is also very difficult, very painful, and uses up all my resources (including language comprehension, which is still something I struggle with on a daily basis, although I cover it up well and have for a long time). And to top it all off, I often say things I don’t actually mean, that do not relate to my thoughts, because of the manner in which I learned speech. It became harder over the years with the movement disorder going on, which is very typical of this movement disorder. I had periods when I could not speak at all. And at this point I have virtually no usable speech, and communicate quite proficiently by keyboard. (I also lost speech when I was very little but regained some semblance of it again, and I distinctly remember regaining it before I knew what language was.)
That’s going to be different in some ways — although not all ways — than someone who has never spoken. Don’t assume it’s going to be the same, but also don’t assume it’s too different. How similar or different I am from any given person has to do with a whole lot of factors, not just our superficial outward speech history. (Personally, I relate more to people who have really struggled with receptive language. I’ve known people who never spoke or spoke very late, but who could always understand everything everyone said, and I have a harder time relating to that than to people who either do or don’t speak, but who have trouble understanding language in general, even if they can pull meaning out of it sometimes or a lot by now.)
Additionally, the way this movement disorder progresses is slowly. I remember a family member, after being out of contact for a number of years, being surprised at how much my abilities had changed. But those who’d been near me at the time had experienced this, as I did, as so gradual that, while it was sometimes perceptible, there were very few periods where anything changed rapidly:
When I was thirteen years old, I had elements of speech, movement, and understanding that cut out on me relatively rarely. Commonly enough to cause problems, commonly enough to come to a neurologist’s notice. But still rarely enough in the scheme of things. When I was fifteen years old, speech cut out often enough that an accommodation letter written at the time suggested the use of writing when speech was unavailable. When I was nineteen years old, speech cut out several times a day, and I was beginning to have serious stamina problems as well as in some circumstances balance problems. I began falling a lot when walking places, and even falling out of trees, which I had never done before in a long life of tree-climbing. I was finally given a rudimentary communication device that allowed me to type when I was unable to speak, something that had been noted since I was fourteen or fifteen years old. Sometime in my early twenties, I became nearly housebound, sometimes confined to one area of my apartment, or one single spot. It was around that time that I began using a wheelchair part-time, which made me able to be more active and mobile than I had been before. At some point, I also found that my speech had reached an all-time low, culminating in a telephone conversation in which I was only able to repeat one word over and over. I became a full-time keyboard-user past that point rather than just part-time. I now live in wheelchair-accessible housing in a cold climate with air conditioning in the summer, which has improved my ability to make my way around the apartment, and which has improved my stamina in some regards since for whatever reason I’m very prone to heat exhaustion. Now, in my late twenties, I’m using the wheelchair more (although I still walk as much as possible) and am beginning to have some degree of trouble swallowing.
I was lucky to meet people who knew what this movement disorder was, and who could recognize it in me from the outside, and point me and the professionals in my life to literature about it. It’s not the most common thing for autistic people, but it’s not as uncommon as it’s sometimes made out to be. It was common enough for there to be a session at Autreat about it the year before my first Autreat. It is common enough that I can easily name a fair amount of other people I know who have it to some degree or another, nearly all of whom end up needing to use communication devices or mobility aids at least some of the time (whether they get those things is another story).
And losing abilities during adolescence and early adulthood is, while also not in the majority, not something that can be considered rare among autistic people, either. One study put it at 17%. Another put it at somewhere around 30-38%. That’s between about 1 in 3 and 1 in 6 autistic people are going to experience a noticeable loss of skills in puberty. And, of course, the correlation between losing skills at puberty and gaining other skills has not been explored, although many autistic people who’ve experienced this have talked about it among ourselves. At any rate, these changes I have been experiencing for more than half of my life, at least have names now, even if they’re not fully understood yet. And they are, while not the most common to happen to an autistic person, not as rare as sometimes portrayed either.
And a lot of things I do just because my personality works a certain way. I’m a person, and while autism is a useful word to describe important and inseparable parts of how my brain works, those are not the only parts of how my brain or the rest of my body works or who I am as a person.
I get really nervous when people assume either that I am just like their child, or that I am totally different from their child and could never be compared. Or expect me to know everything about their children. I don’t. Some people I click with and some I don’t. I don’t think it’s possible to completely assess someone’s skills over the Internet, or to understand someone’s abilities entirely based on outward observations. I don’t think it would be responsible of me to encourage people to believe I’m exactly like their kid or totally different, but I don’t always respond to either one as often as I could, so just consider this my blanket response to all that.
At the same time, one of my strong interests is the study of the patterns that power structures take. Please don’t assume that my opinions are the same thing as how my body works. Someone could have a body that worked identical to mine but totally different opinions, or totally different from mine and have very similar opinions. Same with life experiences. When I have opinions that go beyond myself, they should not be treated as irrelevant just because they do go beyond myself. People are allowed to be Democrats and Republicans and Socialists and Libertarians and such, without being told all the time “You’re only one person and shouldn’t have opinions about other people.” I live in the world with other people so having opinions about them is inescapable, including opinions that affect disability policy and policy in general. I may be right or I might be wrong but don’t try to take away my right to have an opinion just because I’m “only one person”. It’s condescending, it puts me in a lower caste not allowed to have political opinions (and that’s what opinions about disability are, whether the person realizes they’re political or not).
Additionally, there’s a lot of things the media says about me. Some of them are true and some of them are errors caused by inferring too much about me, or by the fact that my life isn’t a nice little soundbite. Please don’t hold me to the standards of what other people say about me. I have changed a lot throughout my life and I have also learned a lot, forgotten a lot, and changed my mind a lot. People have judged me on my outward appearance as both more capable of some things than I really am (particularly when my main classification was “gifted”), and less capable (particularly when my main classification was either “developmentally disabled” or “psychotic” or both), at different times. I’m the only one who fully knows which is which because I’m the only one inside of me. At times I’ve been the only one who knew what I was really thinking behind the paragraphs I could spew out of my mouth, and the only person who knew that I was really thinking when nothing came out of my mouth at all. Other people can’t speak for that even if they want to. There are many people who have been in my presence for extended periods of time but never really known me, because the assumptions of how a person operates and what’s behind a person doing certain things happened in a certain way.
I don’t identify as profoundly, severely, moderately, or mildly autistic, nor as high, middle, or low functioning. Those are words that other people put on me. I don’t think they’re capable of being accurate. I might call myself “severely disabled” because it encompasses all of how I work (not just the parts that pertain to autism) and the degree to which I have a body and brain type that is systematically shut out of society. But just “autistic” is enough, no modifiers needed. The modifiers are put on me by the media, or by people who don’t understand that when I write things that do describe me in that way, I am making a point about how describing people that way influences stereotypes, I am not saying I conform to said stereotypes.
At any rate, if you want to get to know me as a person, stick around. But while I know many people who are like me in a lot of ways, I don’t think you can say that because I share a label with someone we’re identical, or because I don’t share one particular trait with someone that we’re vastly and incomprehensibly different. I don’t like being held responsible for the assumptions people make in this regard, and this page is one more of my attempts to stop that before it starts.
And in addition to all the other stuff, I’m also a (former) Californian (hate to admit it, but I did grow up with the weirder cultural influences of that state, up to and including bombardment with bizarre new age crap that would be considered nonsensical just about anywhere else), an artist, a (possibly bad) poet, a woman, a lesbian, a cat-lover, a mental-widget-hater, a keen observer of what’s around me, what I consider to be a freeform dancer, a former mental patient, a photographer, a baker, and a person with a deep love of humanity and the way it fits into the world in general. None of these things can be put into a nice tidy little category or forgotten just because I have other labels too.