Someone just linked to first person singular piece, which seems like an appropriate title for it given that it seems to be one of those “emotionally honest” accounts that doesn’t examine where the emotions come from and whether they’re appropriate and so forth. This is how she describes finding out about autism:

Autistic. Autism. That word still kicks me right in the stomach. It knocks the wind out of me as much as it did the first time I heard it a year ago, in the cold blunt way we were told of your disorder. “Yup, it’s Autism, and it’s never going to go away.” I remember feeling like all my blood had left my body. And I remember hearing the cold October rain slapping the window of the white, sterile psychologist’s office. It’s one thing to harbour nagging suspicions; it’s quite another to hear the word AUTISM from the mouth of a professional, and to see it in black and white. No longer deniable. Inescapable. Lifelong.

The first autistic people I knew, where the word “autism” was said about them (plenty of my family was autistic without using the word) were in nasty, horrible places with me. But they were not nasty, horrible people, and I never thought they should be some other kind of person. Many of us made friends and communicated with each other while staff were oblivious and considering some or all of us non-communicative and/or incapable of true friendship.

Maybe what I’m writing now mirrors something I wrote a long time ago, but that got lost when my blog crashed: “Lessons on inclusion from a segregated school” was the title.

Where I learned to appreciate neurodiversity was not in the abstraction of an Internet forum but in the undeniable concreteness of institutions for people society wanted to throw away. “Autism” was a word describing the people I found it easiest to communicate with for the most part. But in all of the forms of segregation that I experienced, there was a wide variety of people, and we were forced to deal with each other. And we did deal with each other, in good ways or bad ways, but there was no way for us to control who was there and who wasn’t. So we learned in one way or another to live with everybody.

Everybody meant people with diagnoses that most people are terrified of, as well as ones that are more socially acceptable. There were people with diagnoses of autism, mental retardation, schizophrenia, cerebral palsy, bipolar, depression, dissociation, conduct disorder, personality disorders, low functioning this, high functioning that, and probably anything else that could be thought of. Sometimes we drew lines, and sometimes we didn’t. Sometimes the lines were drawn for us, and we were warned in various ways not to cross.

I learned, though, to appreciate the variedness of people, rather than to regard it as a tragedy. And believe me, we were mostly the sort of people who are regarded as tragic. It’s not ignorance of the full extent of human difference, or what happens to the too-different-for-society’s-comfort, that makes me celebrate its existence. Some people write that it is, that people like me just haven’t seen or experienced these awful things, but the reality is that many of us have, we just differ on our opinions about it.

As a friend, Vanesa, told me — while bouncing off the walls quite literally, while about to spend the bulk of the next few months tied down in a room next to the one I was tied down in, while talking a mile a minute about several topics at once — “The reason we’re here is because we’re not cookie-cutter people. They don’t want us out there.” She later screamed about cookie-cutters in front of staff, who merely regarded it as disorganized manic speech. Words from a private conversation became our code words which became to the staff disorganized speech or echolalia. This is how you communicate around people who simultaneously don’t want you communicating and don’t believe you can communicate or have anything meaningful to communicate. And this — what she said — is also a perfect summary of neurodiversity.

Connection of this kind was frowned upon, was not the norm, but it was there. And it was there most often, for me, around other autistic people.

A purely personal sense of the word autism? I didn’t know what it meant, even when I was diagnosed with it. But it didn’t mean horror, when it did begin to have meaning. It meant people who as often as not inexplicably spoke my language. It meant the first people I felt like I could have two-way communication with on many levels. All of this occurring, oddly enough, inside the nightmare scenario of most parents: the institutions and special schools that really were horrible but that most mistakenly blamed the state of our bodies and minds for our presence in. People blame autism for those places but the existence of autistic people never created those places.

So when I hear the word autism, there are no kicks to my stomach. When I meet autistic people, I have no desire to turn them into non-autistic people. I know the worst things that can be done to us and I know that our being autistic doesn’t cause them. The idea that someone’s version of “emotional honesty” (because it seems to be that pattern, again) means saying how horrible it is that we’ll always be autistic… it’s not good at all.

Tags: autism neurodiversity beauty disability institutions emotion

It seems like there’s a couple ways of portraying autistic adults in most books on the topic.

We are either:

• People who think, feel, communicate, and understand things. Who need minimal support that is rarely outlined, and where books that do outline the support needed, outline primarily social skills instruction and training in learning various skills that we are assumed to be capable of learning. We may or may not know what’s best for us, but in this category we do more often than not and are considered at least partial participants in planning our own lives.
• People who may or may not be portrayed as thinking, feeling, communicating, or understanding, depending on the book. But who are portrayed in a paternalistic and often patronizing light. Other people decide what’s best for us, plan our programs (with perhaps a tiny bit of participation in minor decision-making, such as the famous “Do you want peas or carrots?” question), interpret our behavior in all sorts of bizarre ways, and do various things for us. We are portrayed in this context as needing much more support, but we are not viewed as very active participants in that support, and we are not viewed as capable of more than a tiny amount of learning.

The cause of this rant is the fact that I’ve been looking for a long time for a description of the kinds of services I use, so that I can figure out what services I do and don’t need, and then tell someone. Because so far, the sorts of things I have been told are:

• That I don’t need services at all (very rare).
• That I clearly need services, but other people will decide which ones.
• That I clearly need services, but only the ones that are not all that useful to me.
• That I clearly need services, but would be better off in some form of an institution.
• That I clearly need services, and by a mysterious process that nobody explains to me, these will be decided in my absence.
• That I clearly need services, and can even make decisions, but can only make the decisions that I am not competent to actually make, while not allowing me to make the decisions that I am competent to make.
• That I clearly need services, but that if I cannot articulate exactly which services I need, nobody has to tell me which ones are available.

I’m dealing with two agencies at the moment, who seem to have some kind of odd division of labor between providing services. The one that deals with physically disabled people is much more forthcoming about which services are available. The one that deals with developmentally disabled people (and the one that provides the bulk of my services) claims that nobody knows what services are available because it’s all individualized (but then proceeds to make many of these decisions for me, and often makes them badly to the point of endangering my health, and then tells me that there is a means of deciding which ones I want, but does not make it cognitively accessible to me).

So I’ve wanted a book that lays out, clearly, what kinds of things are available for people like me. I suppose I should explain that I fit neither of the two categories of books that seem to be out there (and that apply to the stereotypes of high-functioning and low-functioning, as well as the stereotypes about how people placed in each categor should be treated).

Because I am:

• Sometimes able to write eloquent sentences. Sometimes not able to use language at all. Rarely able to use speech to communicate.
• Sometimes capable of complex understanding or thinking. Sometimes incapable of understanding or thinking about more than the absolute most basic information (more basic than most NTs know exists).
• Generally capable of making the large-scale decisions about how I want to live my life. Generally incapable of making more detailed decisions in everyday life without a lot of time, effort, and planning, sometimes more time, effort, and planning than is available at any given time.
• Generally incapable of doing what get called “instrumental activities of daily living”. Only capable of some of what get called “activities of daily living”, and only some of the time.
• Capable of the kind of feats of balance and strange acrobatics that autistics are sometimes known for, if given the right triggers to action, but experience great difficulty with deliberate movement, motor planning, and sequencing.
• Sometimes only capable of either extreme of something — either a whisper or a shout, either frozen in place or moving very fast.
• Capable of very skilled and efficient thoughts, movements, words, typing, and/or complex actions within the narrow range that I am doing something in at a particular time, and incapable of doing anything outside that range.
• Capable of using words that I can’t understand, and understanding words that I can’t use.
• Good at communicating on a relatively narrow range of topics, but in many respects (including respects that affect my health) as good at communicating about some things as someone who cannot talk or type or sign at all.
• Not capable of learning much about many of the activities people try to force me into “skills training” for, but capable of learning things that are extremely important to learn and that nobody bothers to teach me.
• Given services I don’t need and not given services I do need, somehow all at the same time, because the services I don’t need are more convenient to staff and administrators.
• Less capable of many everyday activities than many of the autistic people depicted in the second sort (see above) of book, and more capable of certain kinds of understanding than many of the autistic people depicted in the first sort (see above) of book, but not agreeing with the split at all or the way people are treated based on the split, and not finding either way of doing things sufficient.

I am not particularly unusual in that regard. The stereotypes are, after all, just stereotypes. And I am not, even though the literature paints it that way, some kind of mystery or paradox. How I function is how I function, and just because it contradicts prevailing ideas of how people function, or isn’t always understood well yet, does not mean it contradicts itself.

I am, however, someone who benefits from a variety of assistive technology and modifications of the environment that remove barriers to my participation in things that non-disabled people are already not blocked from participating in. Most of this, both this conception of access and the assistive tech, I learned from disabled people, because non-disabled people were too busy telling me what I needed instead of showing me my options or explaining the system.

Which means that, statistically, there must be other solutions than the ones I keep being told about by professionals. But none of the books seem to list them in a form where I can point to “Here, this would be a good idea, and that would be a bad idea, and this other thing would be a good idea with some modifications.” And most of the books adhere to a stratification system and a very demeaning way of dealing with people based on that stratification system, that I can’t deal with. (Not to mention most of them rely on a very individual/medical model of disability, but I would right now deal with that flaw as long as I got the information I needed, which seems to be nowhere.)

So it would be nice to see a book that listed pretty much everything possible, including for people whose abilities shifted around, so I could at least tell what it is that people are doing and what would be useful for them to do. Unless they pull everything out of their butts each time, and there is no such description anywhere so they can continue to do this — which would explain a lot.

Tags: autism disability books communication hierarchies functioninglabels institutions services