2:41am December 23, 2014

I have a collection of books by autistic people, and also a collection of web writing by autistic people.

(The web writing was before the blog explosion. You had to really go hunting to find it, so I would print it out and put it in binders. I would not do this today, because there’s just too much writing out there.)

And the dates on things… there are trends. And one thing that I wish would go away, just fucking go away already, is the search for the person whose autism is purest.

There’s a reason that Temple Grandin is famous and valued over and above Donna Williams, Birger Sellin, David Eastham, Sean Barron, and Thomas McKean put together. Those were the people who had written either autiebiographies or poetry books early on in the publication of such works.

People didn’t like that Donna had been severely abused and became multiple. (Yes, what was passed off as “characters to deal with social situations” for so long — with the encouragement of a lot of people who didn’t want her stigmatized — was actually whole people, not just characters, and had more to do with trauma-splitting than with creating shallow cardboard cut-out characters for social situations. She was finally diagnosed with DID in the past few years, and it amazed me nobody professional had seen it sooner. Probably they were doing the “difference slot, you’re already autistic so you can’t also be all these other things” thing.)

Thomas McKean wrote about hearing voices that he believed told him what people were thinking, among other things. I mentioned that in a book review once, as a compliment for being “out” about such a thing in a community that is so full of sharks waiting to feed on anyone who is different. He thought I was trying to insult him. Oh well. I’m actually extremely happy that he had the guts to put all that on the table, because people need to know that autism and hearing voices are not mutually exclusive, just like they need to know that autism and being multiple are not mutually exclusive. The world would be a much worse place for autistic voice-hearers if he had hidden those experiences, tucked them away in ome corner of his mind, and pretended to be a “pure” autistic person. Unfortunately he got a lot of flack for it. Including a truly unfortunate fight with Donna Williams in which she wrote a public letter saying that he’s probably just psychotic and shouldn’t be representing autistic people out there.

(His retort, “Not a lot of autistic people have multiple personalities either,” was spot on. Glass houses… but I think she’d see things differently now than she did back then, given that she now sees autism much as I do, as what she calls a “fruit salad” of different traits, each person having a different combination of fruit, but all of them fruit salads. I’ve seen her stick up for autistic people who were also psychotic or easily mistakable for psychotic. (I won’t guess at whether Thomas is psychotic or not, because I don’t do diagnosis-by-Internet like some people, and because lots of non-psychotic people hear voices.) So i’m hoping she’s changed, because that whole exchange was ugly and unfortunate. Then again, I find identity policing horrible and unfrotunate wherever I find it no matter who is doing it, because it never leads to anyone being in a better situation, it just makes people unlikely to speak up about their unusual experiences.)

Sean Barron had extremely severe OCD-like traits to the point that it formed a big chunk of what was diagnosed as autism. Which is not to say — at all — that he’s not autistic. Again, autistic people can have things that go along with being autistic, and, more controversially (but I think it’s the truth), what constitutes “autism” for one person can be totally different from what constitutes “autism” for the next. So having OCD, or something related to OCD, that is so bad that it takes over your life, makes it impossible for you to socialize normally, and contributes a good deal towards making you diagnosable with autism? Totally real possibility as far as I’m concerned. Although the Autism Purity Police hate that kind of thing.

Birger Sellin had what Donna would now call very, very severe Exposure Anxiety, among other things. He saw his autistic behavior as a shield between him and the world, preventing him from having to be aware of his own existence or have others be too aware of his own existence, and he fought a truly harrowing battle to communicate and get out from under the anxiety, and I’m not sure if he ever won that battle because I have no idea what he’s done since the early nineties when he wrote his book.

Oh and he was also an FC user, so a lot of people would consider his words irrelevant. Thing is, he was an FC user at a time when a lot was not known about autism, and he was saying things about his own autism that ring so true for me it’s uncanny. There’s things I have told nobody about myself, because I lacked the words for them and still do, that he wrote eloquently about. I know that to write cost him far more effort than it costs me unless I’m so heavily shut down that I need assistance typing, at which point I can only type a couple sentences at best. But then, being someone for whom FC was his only typing option, Birger had a lot more practice at typing, and at the mental gymnastics that FC requires of its typers.

Basically, on the mental gymnastics — and this is true of me to a much more limited extent, because my motor/anxiety/sensory problems aren’t so severe that I can never type on my own — he has to come up with what to write, while his body is off doing its own thing, whether that’s stimming or screaming or looking zoned out and oblivious Then he has to wait for a facilitator to be avaiiable — a situation I find outright criminal. People who need assistance typing should have access to that assistance no matter what time of day it is, what time of the week it is, and where they happen to be at the time. Just like more ‘normal ’ communicators, whether typed or spoken, have access to word-based communication any time that we’re capable of actually doing it. I understand there are serious logistical issues, but I sincerely believe that keeping someone from living completely trapped in their own head (except during a few hours during the day, or worse a few hours doing the week or month) is worth any kind of effort that could bring about change for that person. Lots of FC users, having grown up without any typing (sometimes going up to 50+ years without typing, mind you), are used to not being able to type whenever they want to, and are so grateful for the crumbs they’re given that they don’t want to rock the boat by demanding communication any time they want to communicate as their human right. Especially when there’s so much legitimate fear these days that rocking the boat as an assisted typer will result in all access to communication being revoked and a return to the hell of being unable to communicate except by behavior, and of being treated like an unperson.

Sandra Radisch (one of my favorite autistic writers, I’m still thrilled I got to meet her even if we never directly communicated) writes about what happened when she began to use FC. She was living in a group home at the time. People were skeptical of her typing, so she would deliberately slip in bits of knowledge that only she could’ve overheard. And the reason she could overhear such things is that staff gossiped about their lives in front of her. She kind of liked being able to know things that were otherwie being kept secret, but she hated being treated like a piece of walking furniture that nobody believed could understand anything. Once stories started circulating among the group home staff about things she knew that they were gossiping about, she got more respect and people quit talking in front of her. Which she experienced as both a loss (of access to information) and a gain (of being considered a person instead of an unperson). Then, facilitated communication became controversial. And the more controversial it got, the more people were willing to speak secrets in front of her again. They decided she was an unperson after all. And she rarely has access to communication anymore.

That’s what people face when their only method of communication is one that is highly controversial. This is one reason that FC users try to use the communication time they have, to learn to type independently or speak their writing aloud, or even learn spontaneous speech (I know someone whose son managed that one, nobody questions his communication anymore except a few die-hards who have never met him and think his mom is lying). But there will always be people for whom learning independent typing, reading their words allowed, verbal verification of whether what they typed was accurate or not, or being able to verbalize with their mouths… will only ever be a pipe dream. And they deserve to communicate and be taken seriously as well.

(See my #FC tag for more of my thoughts on FC, because they’re neither the “Everyone using FC is typing only their own thoughts” thing or the “Nobody using FC is typing anything at all” thing. I tag posts on this topic FC even though I’m really referring to all assisted typing methods, whether they be FC, RPM, or things people have made up for themselves. Both FC and RPM are specific, trained techniques they’re not just words for all assisted typing.)

As far as when people say someone isn’t autistic, and/or is autistic but isn’t the one really communicating, but the person knows things only autistic people would know…

People have approached me with the old malicious gossip about Jim Sinclair, left over from the early days of feuds between ANI and ASA. i’ve been told “You have to watch out for xem, xe’s not really autistic, and xe’s actually transgendered not intersex,” and a lot of other damaging bullshit rumors. I always say, “If xe’s not autistic, then why is xyr writing from the eighties when there weren’t a lot of autistic people writing about autism, so full of things that I can relate to as an autistic person and that literally nobody else was writing about?

(And as for the trans/intersex thing, I don’t think that’s anyone’s business but Jim’s. And I’m aware that the intersex and trans communities both have a tendency towards witch hunts of their high profile members, much like the autistic community.)

David Eastham is the one person i never hear negative rumors about, but Inever hear positive rumors about him either. He’s dead, and he’s forgotten by all but a handful of people. just so people are aware, because this is absolutely huge: David Eastham wrote the first published book by an openly autistic person, about autism. Before Temple Grandin, before Donna Williams, before Sean Barron, before Birger Sellin, before Thomas McKean.

David Eastham does not deserve to be forgotten, and he already is pretty much forgotten even among autistic people.

I have never been able to get my hands on a copy of his first book, which I would love to add to my collection. It’s called Understand: Fifty Memowriter Poems. If anyone can tell me where to get a copy, I would pay an arm and a leg if I could get away with it. It’s like the autiebiography-collector’s holy grail.

I have, howeer, gotten my hands on a book that was published posthumously. It’s called Silent Words: Forever Friends. It’s really two books in one volume. One half of it is his mother telling his life story, and the other half of it is his own writing. Unfortunately, if memory serves, he fell into water of some kind and drowned before anyone could get him out, or some other horrible freak accident.

But don’t forget David Eastham, because I haven’t been able to find a book published prior to it, that was about autism and written by an openly autistic person.

Anyway, my point in saying all of these things is getting lost in the details, go figure.

I sometimes wish we were still living in a time when writing by autistic people was a new thing. Because back then, even though autistic people faced horrible backlash at times, at least autistic people themselves weren’t the source of the backlash. And overall I got the sense that publishers were more willing to print things that today would be considered highly controversial.

I think Donna Williams would have a hard time getting Nobody Nowhere published these days.

I think Thomas McKean would have a hard time getting Soon Will Come the Light published these days.

I know Birger Sellin would have a hell of a time getting published.

Even Temple Grandin may have had trouble getting Emergence: Labeled Autistic published these days, despite the fact that she’s the closest thing we have to an early-published autistic person who also fits the mold that is trendy these days. Of course she helped set and enforce those trends, and even when she wasn’t doing it on purpose, parents who listened to her did it for her… so there’s that.

But I think the world would be a much worse place with Donna’s and Thomas’s and Birger’s and David’s writing in it. I think the world is already a worse place for David’s writing getting lost so thoroughly that I’ve been searching for it for over a decade and never found a copy of his original book. The closest one I can find is in a university library collection in Rhode Island, where I’m unlikely to travel, and could not buy the book anyway.

As I’m reading through my autistic authors collection, which has grown huge since the days that it didn’t even fill a corner of a bookshelf… the ones I’m drawn to the most are the ones where people are willing to be honest and up-front about experiences that others might have a problem with or even question their autism over..

Such as Eccentricity by Anie Knipping. It’s a book that combines text and stunning artwork to tell the story of someone who basically woke up at the age of thirteen without any prior memories except her dreams, and was helped to function by what sounds like a plural system. She talks about other worlds, and how to get to them, or perceive them. A lot of people would blow her off as “Someone like that couldn’t possibly be autistic,” as if autistic people can’t have other things going on, as if we even know what autism is enough to say “This person is autistic and that person isn’t” with any degree of certainty, let alone from a distance.

So I welcomed her book both for its total uniqueness among any autiebiography I’ve ever read in my life, and for taking on issues that I know exist among autistic people (because I’ve been part of these weird little clandestine conversations that pop up once everyone realizes they can trust the others not to tell the world about their experiences) but few of us are willing to dare talking about them in public. I also like it just because it’s a good book. But my criteria for which autiebiographies I like has become highly idiosyncratic just due to sheer overexposure to books that all look alike after awhile.

That’s why I’m starting two blogs, not sure whether both will be on tumblr, both Wordpress, or one of each. One of them will be entirely for quotations from autistic people, both to show the wide range of experiences and opinions we have, and because most of these quotes are coming from books that could use some exposure. The other is going to be book review of books about autism, mostly books by autistic people but the occasional one by nonautistic people might creep in. In both cases, one of my main goals is to give exposure to authors who don’t get enough of it, authors who have really interesting things to say that nobody’s reading, andalso authors whose experiences may be too “out there” or “impure” (because autistic people have to be only autistic to be really autistic, the way some people tell it) for the mainstream autism community, or even the mainstream autistic community at times.

I don’t know when I’ll get around to writing those blogs, I still have a deadline looming on a different project, and I still want to finish my novel, especially since it meant so much to my dad that we were both writing novels at the same time… I feel more than ever that I have to write and self-publish it, even if the world hates it or never reads it in the first place, for so many many different reasons, but my father feeling so connected to me through the act of Being Writers together, makes me feel more driven to finish it.

But I think getting my computer back has been an excellent first step in the direction of getting these blogs online. (It’s really hard to edit themes from an iPad.) And I’ve been writing reviews and putting them in my Evernote folders. One rule I’m setting for myself is that the reviews have to be concise. Which if you know my writing style and language limitations, such as displayed in this post, you’ll know is a tall order for me. But I really believe that through practicing poetry in the form of sonnets, cinquains, haikus, and tankas, has forced me to learn to pare down my language to the bare minimum necessary to get a point across. I can’t always do it, as if obvious in this post. But when i do book reviews, I’m going to try to make them concise, maybe set myself a word limit and stick to it as hard as I can. Because I want people to read them, not be overwhelmed by them and have to scroll down to a possibly-nonexistent TL;DR summary (which I can’t always do… this post included).

I wish autistic people could just be autistic people and talk about our lives as autistic people without having to be The Perfect Representation Of Autistic People, or The Perfectly Pure Autistic Person With No Other Issues (which I have a hard time believing actually exists). Autistic people can hear voices, we can be plural, we can lie (oh yes, that was what got Temple Grandin’s autism questioned, was her playing pranks as a kid and convincingly lying about them to get out of trouble), we can do bizarre things for attention (see the book Atypical, which was extremely revealing to me of some dynamics between me and my brother that I never understood before), we can have internal worlds, we can have all kinds of experiences, some of which are directly related to what has gotten us diagnosed autistic, others of which are things we have in addition to being autistic, and honestly it shouldn’t matter. We’re people, before we’re anything else, and people are more complicated than we like to admit sometimes.