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.
Comments from when this was a page not a post:
Ballastexistenz 
I like the ways you describe yourself in the final paragraph. Most especially as being a person with a deep love of humanity.
Bizarre new age crap is not confined to California.
Would you describe yourself as aphaisic? I don’t know if autistics who have speech difficulties can also be described as aphaisics.
Thanks.
I didn’t mean that it was confined to California, merely extremely prevalent in California to the point where when and where I grew up it was impossible not to get hit by a lot of ideas from it even among people who wouldn’t describe themselves as thinking that way at all.
No, I would not describe myself as aphasic (and aphasia is not confined to speech, nor to expressive language in general). Aphasia happens from injury to certain parts of the brain after they have already otherwise developed in a typical manner. Aspects of autism that in some people resemble it, are more likely to have to do with differences in the way the brain functions overall, and I suspect that superficial resemblances are only superficial (although there can definitely be resemblances).
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.
Yeah, we feel something similar. In our case, we remember being able to understand what we were saying, even when we knew it was nonsense, but frequently not being able to understand what other people were saying or why they were saying it a lot of the time.
What is a mental-widget-hater? Also, what was it like in California as opposed to other parts of the country?
On mental widgets, see this stuff.
On California, hard to describe in a short period of time, but basically there were a lot of very strange (and inaccurate, sometimes dangerously so) things that I was taught as fact from a lot of very “respectable” people, and while that’s true in a lot of places, the particular nature of the strange “facts” is very common in California as opposed to many other places (although there seem to be isolated spots in other places that have similar ideas, they just do tend to be more isolated and less all-pervasive).
About being a photographer. I think of photographers as being photojournalists for publications like Picture Post and Time Life, who took the great iconic photographs of the mid decades of the twentieth century.
Until the 1970s ‘serious’ photographers recognised only pictures taken in black and white as being ‘real’ art photography. Colour was dismissed as being commercial.
The subjects of photographs have often been people marginalised by race, poverty, disability, illness, sexuality etc. Most photographers have been white, male and able-bodied, who photograph people who are not like them; though there are several female photographers. Annie Leibovich? But I don’t know of any disabled or autistic photographers, though there must be some.
It would be interesting to explore the extent to which photographers have had, and still have, a ‘view from above’ attitude towards their subjects.
Larry Arnold is a photographer who’s also autistic.
When I was still working at Gallaudet University as, among other things, a writer for its alumni magazine, I once interviewed a speech impaired student (she was hearing, but was speech impaired) who made some really beautiful artistic photography focusing on the beauty of signed language. This was some years ago. I’m not sure where she is now or whether she has continued on with her photographic artistic work.
I imagine there must also be some professional deaf artistic photographers as well, or at least some who are amauteur. I do know there is definitely a deaf man who does professional free lance photography for Gallaudet University (used to work there full time), but more for things like graduation and so forth not artistic type.
There (is? was? I’ve lost track) a TV, film, and photography major at Gallaudet.
Dear Amanda,
I have only just discovered your Youtube ‘In My Language’ video clip, for which I write to thank you. To be allowed the glimpse/soundbyte in to your language is to feel ny own is two-dimensional and that you have a 3 (or 4) D system, which must feel much more precise (I think that is the word – but I only think that), or concentrated? Like poems?
My thanks again,
Sara
I’m just so blown away by your entire blog. I always related autism in my head to be cut off from both verbal, and written language. I’ve been extremely incredibly wrong.
Your writing is amazing, and communicates to me, in my language, a world entirely unseen to me before. Thank you for making the effort.
Yeah, most autistic people actually develop oral language at some point in their lives, and even among autistic people who speak fluently (as I once at least seemed to), there’s a lot of people who do better in written language than speech, or who have speech cut out intermittently (as mine used to do) but retain written language for at least part of the time that speech has cut out.
One thing about that is really interesting, though, in how many people who are supposed to know about autism who seem to not understand that someone who can speak fluently can have speech cut out intermittently. When I was diagnosed at age 10, they would say I didn’t have trouble with speech and it was nonverbal communication I had trouble with, which struck me as strange, since I used and looked at people’s body language a lot, as my dad (also on the spectrum) taught me when I was little.
Now, in high school, they say that my only difficulties in speech are with pragmatics and nonliteral language, the latter of which I actually am pretty good at using. Then when my speech cuts out, they are at a loss and act as if it’s never happened before, even though a number of times they’ve been around when it’s happened, still expecting me to speak even when I type that it is not going to happen at that moment!
If people don’t understand, can they at least be observant? Particularly when it is their job to work with autistic people and other people in the special services department.
There is a funny thing about reading comprehension, which although I have a fairly large vocabulary of individual words and love to read, I tend to have trouble with understanding it until the second or third time I read something. But, somehow I scored well on reading comprehension exams, and so it was assumed I was excellent at it – though the skill I really had developed was making educated guesses as to what the answer might be based upon the wording of the question and answer choices. I tested it out recently on an SAT practice book, where I didn’t even read the reading selection, and I still scored highly. Another reason why tests and numbers have little meaning for me.
@Melody:
re: Autism ‘experts’ who don’t understand that your facility for speech isn’t constant — two possible reasons. No disrespect intended:
1) Non-autistics assume that people’s abilities are consistent and persistent — this is what we have come to expect from a lifetime of dealing with other non-autistic people. We don’t usually lose the ability to speak clearly without having suffered brain damage.
2) It’s very difficult for most people to ‘be observant’ when they have no idea what they’re seeing. Detachment from unhelpful presumptions in the face of entirely new stimuli often has to be learned. I remember an exercise from my freshman chemistry class in which the professor held up a beaker of clear liquid and asked us, ‘What is this?’ ‘Water,’ someone blurted out. ‘Maybe,’ said Dr. Hoeger. ‘How can we make sure?’ It was a good lesson — when seeking to understand, don’t assume you already know anything.
I would think the only real experts on autism are autistic themselves…
I have just found this website, while looking up autism for a project I am doing in college. I am working with a child who has just been diagnosed with autism, he is also my future nephew. I have found this website very usefull and informative. when someone is diagnosed with autism it can be very hard for the family of the child to understand and comprehend, its a very hard time for them as they are unsure about the future of their child. common stereotypes do not help the matter at all, this is the best site I have found on the matter and I am sure any parents who see this site will be helped and relieved. I will deffinetly be showing this site to my future sister in law as I berlieve it will give her hope for her sons future. I want to say thank you for this site and keep up the good work.
I am an autistic photographer. I mostly do artistic photography. But I did photograph an anti-war protest back in November of 2007. Some of my pictures of that protest were published in a local news paper. At some point I need to post my pictures online somewhere. For now you can see some of my pictures at http://www.cafepress.com/jenpelphoto
As far as heat exhaustion goes. There is a guy at the Aspergers group I go to, who is sensitive to heat. He will be in shorts and a teeshirt when everyone else is in pants.
Love your blog and videos. Keep it up
I just discovered your blog today by indirect way of the Wired magazine article (which led me to YouTube, then here). My discovery of the Wired article was initiated by my own reaction to my son’s exit IEP yesterday (he’s moving from an early childhood program to a program for autistic and cognitively impaired children next year). He was diagnosed as autistic at 3 (he’s 6 now). Yesterday was the first time I’ve ever had anyone tell me that they consider my son to have a ‘moderate cognitive impairment.’ This sent me on a search to figure out exactly what this label encompasses (only to find that it’s seemingly so general that any child who takes longer than “typical” to master skills could be labeled as CI, though I don’t personally agree with that). I’ve been riding a rollercoaster of emotion since it’s become increasingly clear to me that our ISD’s curriculum for autistic and CI children focuses exclusively on what they term as “life skills.” Meaning they fully intend on teaching him how to read a sign that says Exit or Restroom but no intention of teaching him reading skills that will help him enjoy literature or informational non-fiction pieces. The strict focus on gaining the skills to (in their words) live at least semi-independently feels very wrong to me…as if the educators that I’m supposed to be teaming up with think that it isn’t worth teaching *him* anything but these very basic, task oriented skills (at the very same time, our daughter who is just a year older is having a massive amount of material shoved down her throat in her 2nd grade class at a pace that makes my own head spin!). I am frustrated because it seems like my husband and I are the only one who recognize our son’s very clever problem solving and reasoning skills. Each year we keep adding these things into the IEP documentation, but I swear they (the school administration) just look at me as some overly-optimistic parent. I’m beginning to feel like we, as his parents, are the only ones who want to (as you so eloquently put it in one of your YouTube videos) learn *his* language. Nicholas is mostly non-verbal…and I can tell that it is not from a lack of things to say, but due to what appears to me to be a difficulty getting his mouth to form the words. I crave nothing more than to learn his language so I can be “let in” on all of these thoughts and emotions that I see pass over his very expressive little face daily.
I apologize for the brain dump above. Sometimes I just need to get it out and I feel like there are very few places and people who ever understand my thoughts and feelings about these things. I get so tired of people looking at or acting toward me like they feel sorry for me because my child is autistic. I don’t want a magic wand that I can wave and strip him of his so called “austistic traits.” What would I be left with then? A totally different child than the one whom I adore right now. What I want is the magic wand that gives *me* the capacity to understand *him* better. I feel like I speak English and he speaks French and somehow I am unable to learn a second language.
Anyhow, thank you for your videos and this blog. I now have months worth of reading to catch up on!
Amanda, you rock. I don’t know how much or little we have in common, or if you think we ‘click’ or not, but you are such an awesome person and I think that in some weird ways our brains work very similarly on the inside. Insofar as you express the inside of your brain to the outside world.