Autistic Archive

(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 didn’t know Chris Slater well, although we spent over a year together on the same autie-positive chatroom.  But I remember certain things about him.  And I remember when he died.

This was his webpage from around when I first met him.

He was an ABA success story.  This means that when I knew him, in his late teens and early twenties, he didn’t know who he was.  He believed himself to have overcome autism.  But all he’d done was stuff his head full of nonautistic behavior, to the point where he had no room left to think his own thoughts, make his own decisions, or run his own life.  Sometimes when you talked to him it felt like someone else was speaking through him.  But since he did not use assisted typing, nobody cared how much influence others had on his communication.  Which was, much of the time, far worse and more pervasive influence than I’ve seen with many FC users.

Anyway, he had a tendency to be… over-dramatic, at times.  So at one point he and his girlfriend called together all the regulars in the chatroom, Chris had something he wanted to say.  He made a big show of describing how he was rocking and flapping now, instead of suppressing those impulses as he’d been taught.  It took a lot more than that to overcome his ABA training, but it was a start, and he was well on his way to becoming his own person, not a puppet of his trainers.

And then he died.  In his early twenties. Right as he was getting a foothold to understanding who he was.  It would’ve been even worse if he’d died still a complete robotic ABA puppet.  But it always seemed unfair to me that he died just as he wsa learning to come to terms with everything that had been done to him, coming to terms with what a “The-World success story” meant and how to get back to acting as his real self – one challenge you face at that point is to become who you are in the moment, rather than a parody of who you imagine you would’ve been.  And when he died, he was walking that line, sorting out the difference, learning who he was.

I don’t remember exactly what happened.  I think there was a head injury.  His brain swelled up a lot and he went into a coma.  His parents were told that if he didn’t recover in a few days, he’d never recover.  (Where “recover” often means “become nondisabled”.)  His  parents took him off life support.

An autistic woman who claimed to be able to talk to dead people’s spirits (and I don’t hold that out as an impossibility in general, although for her, I was skeptical) said he was just as sad and bewildered as the rest of us were.

I was mad that he’d been given up on so soon.  I happened to know that there were people who’d survived much worse brain conditions of that sort, for much longer, and who eventually came out of the coma and regained some abilities. Sure, they usually had some new physical and cognitive disabilities, but they were alive, and generally glad to be alive.  I also know (from reading stuff by people who work in them) that some ICUs develop a toxic culture where the doctors and nurses present worst-case scenarios to the families, in as lurid a manner as possible, in order to persuade the families to pull the plug so that their patient doesn’t end up severely disabled.

At any rate, I miss him, and it seems cruel that he died before living the life he wanted, as who he was.  He’d literally spent most of his life living as other people’s dreams for him, not as himself.  And that was just plain tragic.

Tell me, what is fair about that?

Some people even think we shouldn’t be able to use word prediction on the keyboard because it may influence what we want to say. But everyone else is able to use it to make typing easier. Being held to a higher standard is like being under a microscope at all times, and I can tell you it stinks. I hate feeling like I constantly have to prove myself. YOU are able to get up and give a presentation in front of an audience without others whispering “so you think he really wrote that?” or “but how can someone who looks like that be able to feel and think that way?”

- Gregory Tino

When I was a teenager, I happened upon the autistic community. This was sometime circa 1998. I had oral diagnoses of autism and ‘idiot savant’, paper diagnoses of PDDNOS, atypical autism, developmental disorder not otherwise specified, central nervous system disorder not otherwise specified, and a whole huge list of psychiatric labels both accurate and inaccurate. I’d met other autistic people, even discovered one with enough in common with me that we could just communicate without the need of speech. I’d read a little Donna Williams and a little Temple Grandin here and there. But I didn’t really know what autism was and how it applied to me. Especially because nobody ever really talked to me about what it meant to be autistic — not explicitly.

Unfortunately, one of the first conversations I ran into in an autism discussion group, changed my view of things towards the… let’s just say… less responsible for my own actions and their consequences. Most autistic adults have some sense of social propriety. Mine was badly broken from, among other things, years in the psych system.

Then I encountered a conversation that went something like this. Mike and Jeff will be the names of two autistic people, Annie and Barbara will be the name of two parents. I don’t remember any of their real names.

Mike and Jeff are carrying on an obnoxious, pointless argument that is disrupting the entire discussion group.

Annie tells them to knock it off, that they’re disrupting the group and need to be nicer to each other and quit flaming each other over stupid shit.

Barbara turns to Annie (virtually) and says something like this:

Don’t you remember when our children were very young and couldn’t talk at all? Well here are two adults who have the same thing our children have. And look at them! They’re commnicating! Can you believe it? Leave them alone, the way they’re communicating may be unpleasant for us to look at, but remember how hard it is for our sons to communicate, and these two adults with autism can communicate well enough to fight like this. This is what we want for our sons! Celebrate it!

I was thrilled in every wrong possible way. I was always getting told off for my social ineptitude, and now I’d stumbled upon a place where the bar was set so low that just communicating was seen as an accomplishment, no matter how rude or disruptive the communication was . I thought it meant I wasn’t really responsible for what I said as long as I said something, anything at all. I was totally wrong, but at the time I was thrilled. No more being chastised. I was so very wrong.

So when I first started joining autism groups, I let it all hang out. I remember this one chatroom. At the time, I thought I was doing great there. Years later, the channel owner told me that everyone on the channel had asked her to throw me off for “trolling” — they didn’t think even an autistic person would have social skills bad enough not to grasp what I was doing wrong. But I really and truly was that dense.

As an example, when i was feeling a certain way, I would preprogram text to quote music, TV shows, or things I’d written in the past, that echoed how I was feeling in some way. For as long as I was feeling that way, I’d continue to repeat the same stuff, flooding the chatroom and making it unusable for everyone else.

Whenever the moderators would try and stop me, conversations would go something like this:

MOD: Mel, this is a channel where autistic people need the freedom to be able to communicate…

MEL: Yeah, and I’m an autistic person, and I’m communicating, right?

MOD: You’re making it hard for other autistic people to communicate.

MEL: But… I’m autistic, and I’m communicating, so the channel is fulfilling its purpose.

I really and truly did not get the effect I had on other people. Fortunately, one of the channel owners noticed this and began the years-long, difficult, thankless task of teaching me manners, teaching me to behave like a decent human being towards other human beings. I can’t thank her enough.

Anyway, back in the bad old days (when it came to my social skills, not that I’m claiming perfection now, but they were bad back then)… two people approached me about taking part in some writing project. And I’m ashamed to say that I actually said the following to them:

I’m not really interested in collaborating right now. If you have opinions of your own, use them!

They tried to explain to me how inexcusably rude it was to treat people at least twice my age as if they had n life experiences or opinions to discuss. I didn’t get it. I thought they were just giving me crap for being young, not explaining something that’s always rude, no matter why.

Anyway, I’ve learned a lot since then. My social skills are far from perfect, but they’re not nearly as embarrassing to think about as my initial reactions around other auties online.

So.

Um.

In recent years I read a book.

It’s by one of the authors that I rudely told, “If you have opinions of your own, use them.”

And it’s a pretty good book. I collect books by autistic people. A lot of them fall into the same category as this one. Autistic people call them autiebiographies — autobiographies and memoirs by autistic people. Some are good, some are bad. Some are unique and original, others can barely be discerned one from the other.

And I can say that Kimberly Gerry-Tucker’s book Under the Banana Moon is one of the more interesting ones. It has many unique qualities that make it stand out from the average autiebiography, although i couldn’t tell you exactly what they are. Here’s what I wore a year ago:

Kimberly Gerry-Tucker has a book out.

And although I have not finished it, I strongly recommend it to anyone who knows her.

Things I love about Kimberly:

She’s a genuine nonconformist.  She doesn’t try not to conform – she’s not an anti-conformist.  She just doesn’t conform, and refuses to take any shit for it.  Every year around Labor Day she used to defend the MDA Jerry Lewis Telethon in groups of people steeped in the disability rights view of the telethon.  I don’t agree with her stance on the Telethon, but I totally admire her for sticking to her viewpoint in the face of such well-researched opposition.

She’s one of those people who has been forced to function beyond her limitations.  Like, in our own ways, Draggle, me, AnneC, Donna, and lots of others.  It often involves juggling, always barely managing not to drop the ball before the next one comes in, often actually dropping balls, having to start over, falling apart, falling to pieces, but always getting back up again.  This is a trait i’ve seen in many autistic people, in many types  of autistic people, and I guess I like seeing it, despite the pain, because it’s so familiar to me and my friends.

She’s eccentric without trying to be.

She’s a mime. She feels that when she is dressed as a mime she can be more ‘herself’ than she can when dressing and acting more ‘normally’.  I think that’s cool and amazing.  You can see her mime outfit here.  And there’s something about being a mime that just says, “I genuinely don’t care what you think, I’m going to be myself at all costs.”

She’s just Kimberly, and I can’t help but like her even though we have nothing more than a passing and not always positive relationship on email lists.

Her book is out on Kindle.  It’s called Under the Banana Moon: A True Story of Living, Loving, Loss, and Asperger’s.

So I strongly recommend this book if it, or the author, sounds interesting to you.   I certainly found it interesting to know what was going on in the background at her home during all the time I knew her online. We were never close, but I’ve always respected her.

And here’s what I wrote in response to an ask from her after she found my note:

She asked:

I understand you’ve read my memoir Under The Banana Moon (living, loving, loss and aspergers)? A google search elicited a response that the title of my book is mentioned in a Nabokev work. Although Nabokev does mention the moon a lot, I can’t come across the specific quote. Do you have it? If it’s true, I like my chosen title even more:) We are all connected somehow. Anyway, how did you like my book?

Then I responded:

I loved it, I felt like I got to know you better than I’ve gotten to know you online, and I always have liked reading your writing. You’re one of a certain sort of person I’ve known (and been), who manages to do a lot more than you “should” be capable of given your actual abilities, often by using one ability as others fall apart, which confuses people in many different ways. I like reading things by people who do that because it makes me feel less alone and I can relate to it. I also liked getting to know more about your family.

I’ve never read Nabokev so I have no idea about the banana moon thing.

I move on a different frequency, yes a different rhythm.

Please don’t kill me because I’m different. I deserve a chance at a good life. My Black Life Matters.

Instead, celebrate me!

I’m a descendant of the people who built this country you worship, and the ground you freely walk and that flag you love so much that Betsy Ross stole the credit for.

In 1995, nonspeaking autistic activist Sue Rubin wrote about her activism to shut down the Judge Rotenberg Center , taking inspiration from the worker’s rights activist Cesar Chavez. (It is so enraging how we are still fighting for the same thing now but good to see how people like me have been fight for these things longer than I have been alive.)

Using aversives is as much an assault on humanity as was the poisoning of farm workers. That is why I look to Chavez for inspiration. Like him, I want to organize autistic people to bring abusive situations to light and gain support of the general public, who are unaware of these outrages.

Chavez' struggle taught me how advocates must speak out against injustices and do something about them. He also knew there is strength in numbers and spent his life uniting people.

This is a library of nonspeaking people writing, creative work, and how we share our experiences over time. The full library might be on a Google document, or merge with a toolkit others are making aim at parents of nonspeakers, or post on a separate website. I am still figuring it out! This Tumblr blog is a way for me to figure out a tag system so it is easier to sort by category. Each resource will be posted separately and tagged with all the things it could apply to. I will have a ‘table of contents’ that lists all the tags soon. And an author and subject index.

This is a living document. Things will be added to it as I read more from my kin and as we keep showing our words and selfhoods to the world. If you have ideas for links to add to this document, please message or send a ask! It may take a while because of my disabilities and time constraints but I will get it uploaded.

A few notes

1. Not everyone I include here would describe themselves as nonspeakers. Not everyone might fit the group most usually called nonspeakers. However it mostly includes writing by nonspeaking autistic people who use partner assisted methods to communicate. That is my own experience but I am trying to add people with a bigger range of disabilities. I am using the biggest and broadest definition of nonspeaking here. It includes other groups like: minimal and unreliable speaking people, people who can use speech sometimes but not always, people who identify as nonverbal instead of nonspeaking, nonspeaking people who are not autistic, and AAC users who do not call themselves nonspeaking. I am not saying all of these experiences are the same thing but I am seeking to put them all in conversation and arrange them in mosaic over time instead of staying siloed off.

2. Some of these links will be written by people who are not nonspeaking, but I still think people should read to understand our lives. I am centering our voices, so I will tag #speaking author and tag the the role they have in our lives (parent, professional, speaking or semispeaking disabled person, researcher, ect). In order to represent people whose best communication is not through words, I will sometimes include links by parents and others who know a nonspeaking person well, who talk about their communication in deep and respectful and curious ways, not by putting it as sad or lesser. If you have issues with a resource I post that is wrote by a speaking person, please let me know.