Autistic, Allistic, Neurodiverse, and Neurotypical: Say what?
Coming into the neurodiversity movement, there are some terms that a new person might not be familiar with. I’ve been seeing a lot of questions about some of them, and some misunderstandings about them as well, so it is perhaps time for writing something on these terms.
If you are reading this blog, I’m assuming that you know what Autistic means in a general way. Some of you might still hold some misconceptions about autistic life, but I believe that to be a part of the learning process. You are reading Autistic voices either here or on the blogs of other Autistics, hopefully learning from it, and that is what matters.
You’ll notice that I use “autistic” rather than “person with autism” throughout. This is intentional. The basic idea is that my being is autistic- the patterns my brain form thoughts in, the essentials of the way I perceive and learn from the world are autistic. Autisticness is, for me and many others, an essential part of what makes me, me. Saying I am “with” autism denies this reality.
There are many brilliant writers who have addressed Autistic vs person first language in more depth. Jim Sinclair, one of the Autistic community’s elders, wrote a piece in 1999 on the issue which you can read on Cafe Mom. Many others have echoed and expanded upon Jim’s thoughts since then. Lydia over at Autistic Hoya has written a number of posts on identity first language vs person first, including “The Significance of Semantics: Person-First Language: Why It Matters” which ends with a list of links to other writers on the issue.
Some people’s constructions of how they phrase their identity are very personal, others political, and a good number both. I have multiple disabilities, and have a mixture of phrasing for myself. My own preferred construction is “Autistic with anxiety/chronic pain/etc.” When I expand that beyond ability it gets more complex, but I will leave it at this because eventually listing every part of my identity, regardless of relevance, becomes a metaphorical rabbit’s hole.
Allistic, on the other hand, means “non-autistic.” (Some people use “neurotypical” this way, but I”ll get to why I disagree with that usage in a moment.) That is all it means. It doesn’t mean someone is intrinsically better or worse, and it doesn’t indicate ally-hood or opponent-hood. It just means that someone is not autistic.
Allistic is a term that members of the autistic community came up with. While the earliest mention I can find (Zefram, Fysh.org, 2003) is constructed to work in a parody, the word construction makes a lot of sense. So much so, in fact, that Zefram’s work isn’t known to many community members now using the term. In Zefram’s postscript, it is explained that the construction is based on the way that the word “autistic” is constructed:
The word “allism”, invented for this article, is intended to precisely complement “autism”.
It is based on the Greek word “allos”, meaning ”other”, just as “autos” (in “autism”) means
“self”. [...]
This explanation of “allistic”‘s construction continues to be in use. As some might note, the relative constructions of “autistic” and “allistic” are not dissimilar to the relationship between the words “transgender” and “cisgender.” Even if the alternative was developed to suit the needs of politically charged parody, allistic is linguistically a more accurate term than some of the alternatives.
Neurotypical is often used interchangeable with allistic, but I would argue that it isn’t actually interchangeable. Neurotypical is short for “neurologically typical”- within the typical range for human neurology. Obviously it wouldn’t make sense to say that someone with definitively atypical neurology was neurologically typical just because their atypicality wasn’t that they autistic. Indeed, the Neurotypical/neurodiverse terminology has been adopted by certain segments of the Mental Health consumers/survivors communities for this very reason.
On-going usage aside, from what I recall the initial usage was one that is synonymous with the current “allistic.” However, between the acceptance of autistic cousins (those who aren’t autistic but who have similarities, including those with ADHD) and the penetration of the term beyond the initial communities it swiftly became used more diversely. Eventually, the more diverse (and in my mind accurate) usage meant that a more accurate term for non-autistic was needed. (Which brings us back to Allistic!)
Neurodiverse can have two meanings depending on what it is talking about. When referring to individuals, it simply means that the individual(s) in question have neurologies that are neurologically atypical. AKA, that they aren’t neurotypical. Generally speaking this usage is not used to just talk about Autistics, but is inclusive of other people whose neurology is atypical.
When discussing a population sample, though, it can mean that the neurologies represented are diverse. In this usage, the people in question include more than one type of neurology, and may even include members with individually typical neurology in some instances. This is the less common of the two usages that I’ve seen, though.
I hope that this was useful. For those interested in more information about the origins of certain aspects of autistic culture, I recommend you read Jim Sinclair’s History of ANI, which documents the early days of the autistic culture movement through the establishment of Autreat.
___
Personal note: I’ve been a bit distracted so far this month and have had issues coming up with something to write for here- while at the same time, preparing for putting things out elsewhere later this month. That I haven’t done much writing here so far this April hasn’t sat well with me, so I figured it was time to do another terminology type post. This isn’t the best post I’ve written, but it is what I have for you today.
Stimming in Public (and Breaking All the Rules)
I recently put together a video of me Stimming in Public. Regardless of the reception (which has been great!), it has always been intended as an ongoing project for this year.
If you have been following me on facebook, you might have already seen the video I recently put out. In it, I document myself stimming in public spaces during my recent Baltimore, MD and Washington, DC trips, all set to “America” by Orphan Songs. (I really liked the song, and feel so glad that the artist had it up for Attribution and Share Alike use via Creative Commons.)
Some of it was organic- I was there, and happened to think of pulling out the camera on the train, at baggage claim at BWI, and at the Baltimore Waterfront. Others were planned in that I went there with the intent of shooting some video. I spent a long sunny day at capitol hill filming at the Supreme Court, the Capitol building, Library of Congress, Department of Health and Human Services, and the Department of Education. It was both exhausting and satisfying, not just as an art effort but also as someone who was made to feel scared of the potential actions that could be done in the name of these places.
(There are captions at youtube of the song, even if they don’t make it in the embed.)
This, as I’ve mentioned, was never intended to be a one-shot thing for me. I mean, I’m going to be doing the stimming when I’m in public anyways, so I might as well film it in case it does something positive for someone else, right?
Therefore throughout the year 2012, I’m going to be putting together a video of me stimming in public for every major trip. I’ll try to get some interesting/meaningful locations in when I can, but most of it will just be what I have access to since almost all of my traveling is for advocacy events.
Between now and July1st, I know I’ll be going to Harrisburg, PA; Chicago, IL; Seattle, WA; Woodburn, OR; and Detroit, MI. Later in the year I’m hoping to get back to Washington, DC and to visit family in the area of New York, NY; Wallingford and Hartford, CT; Providence, RI; and similar locations. (I’m really hoping on the CT-RI trip to get a chance to film with some people in front of the JRC!)
If I get more things scheduled later in the year, I’ll be filming at those as well. It’s basically an every-chance-I-get thing for filming these. I mainly will be doing them on my own, though I hope as the year goes on to be able to have multiple people in the shots with me. Indeed, I’d love towards the end of the year to have a chance to film a bunch of people stimming together at once. I think it would be really. . . evocative, to end a series with a community together, when it started with me all by myself. But that’s just a thought, not a plan.
That is the project summary.
I don’t want to act like this is an idea that is exclusively mine. First of all, I’m sure I’m not the first person to think of it or do something like it. Secondly, all I’m doing is filming myself living life as myself, something I hope to have be a reality for all Autistics. It’s scary, but someday it won’t be. Someday I hope to meet young Autistics who were never afraid to stim in front of Authority, who never had to deal with the ableism it can be met with. Autistics who won’t have to make the choice between safety inside of their heads vs safety from people’s bigotry outside of it.
That being said, if you decide to do something similar, let me know! I’d love to see members of our community going out there and doing this if they feel so inspired. I feel like that would be something amazing to see.
A Quick Update
It has been a while since my last post, and I have a lot of stressful stress happening. I do have plans for several entries this spring that I hope to get written, but I wanted to give a very quick update in the mean time. It’s my hope that I’ll manage to get a post out on each of these issues this spring.
First, a reminder: Loud Hands Project is still taking donations for 7 more days/until the end of march15th, 2012. The initial fundraising goal of $10, 000 to fund the anthology was met, but there are more benchmarks. If we can reach the next one, $15,000, in the next few days LHP will be able to do a documentary on Eugenics and Autism. That’s only about $1300 to meet that benchmark- and there are more benchmarks after that that you can read about on the website.
If you know me personally, you know that for the past year and roughly two months, I’ve not had a permanent residence. Thankfully, I’ve had family in my area who have alternated care of me. I stayed for several months at my grandmother’s last spring, stayed in a building owned by family that isn’t technically livable over the summer in a camping style, and since September have alternated between my sister’s and my mother’s. It’s very hard on me, and it is hard on my family. We’ve been trying, with the help of my Intensive Case Manager, to navigate the housing system, but with little luck. I’m hoping that I’ll have some resolution on this soon so that I can process some of it to share.
During the time that I stayed at the old house, I had an incident with sexual harassment that might be mentioned in another post. I thought at the time I was being targeted because of being poor, but my sister thinks that the fact that everyone in that little town is very aware of me being disabled was a factor. So I’m hoping to get a post on sexual harassment written. It would have been nice to have written it for International Women’s Day today, but I just couldn’t get it together.
I’ve gotten involved with a group of self advocates called Self Advocates United as 1. They asked me to join their board, and to become a trainer. I got a chance to visit a couple of state developmental centers to teach self advocacy skills for the people still living in the centers to use. It was a great experience. I loved being around other people with disabilities, and I learned a lot about audience participation and involvement from fellow board member and trainer, Larry Kubey. (Larry is also THE music man- he knows almost everything there is to know about pop music from the 60s on.)
I’m looking forward to an event in May where we will be gathering questions about moving into the community from the people from the centers who are looking to move in the next couple of years and addressing them to providers in the community. Hopefully, some of the myths and misconceptions people have about community living can be addressed, and help people feel more confident about their choice to move into the community. I hope to have something on community living this spring or even early summer to share with you all.
I went to a specialized psychiatrist in Pittsburgh, and had one of the best experiences I’ve ever had with this type of doctor. The facility specializes in people with developmental disabilities, and the particular doctor I saw had a lot of books on OCD, Anxiety Disorders, and Autism on his shelves. Because I’ve had so many horrible experiences, I found it remarkable- as did my mother- and so you should expect a post on this next. Depending on my anxiety levels, I might even get it done this week or next.
It’s my hope that you can use it in a couple of ways: 1) to know that not all psychiatrists are going to be horrible. 2) to have an idea of what might or might not work for you to look for in your search for a psychiatrist that will respect you. 3) To show your psychiatrist or care provider that they don’t have to be so horrible.
Of course, I’ll also be writing a post for Autism Acceptance Day‘s blog carnival this year as well. I’m not sure of the topic yet- and one of the above topics might end up being my post for it- but I do have plans for it. It would be great to see some new writers contributing this year, too, and I’m willing to provide some basic support where I can if you want to try.
The last thing I want to make sure I mention is a little post I am planning on doing for Mother’s Day. I’d love to hear from people about their mothers, or about mother figures’ experiences getting unconventional expressions of love from their families to either share or link to in my post. I’m going to be talking a bit about how even though many of the masculine figures in my life perpetuated some serious abuse- which I’ve discussed elsewhere- how my mother worked hard to support me.
I think that this is especially important, not just because I want to recognize my mother, but because my Autistics Speaking Day post was initially mentioned (and since amended!) in a round up as pointing out parents/allies as the problem, and that wasn’t my intent at all. I think many parents end up coming into the support role with this idea that their voices and experiences are centered. That they are “the voice” of their kids rather than the facilitator of their kid’s “voice.”
And that’s true no matter what level of communication your child has. You are there to facilitate their needs and interests being met. And the role of facilitator becomes more and more just facilitating as your child grows. And now I’m ranting, and I’m going to end now. Basically, I want to reaffirm my gladness for my own mother’s support and facilitation of my needs, and in the process celebrate similar mothers/maternal figures who have demonstrated excellent ally-ship.
Quiet No More- The Loud Hands Project
“Remember, you weren’t the one / who made you ashamed, / but you are the one / who can make you proud.” - Laura Hershey, You Get Proud By Practicing
I think a lot of the people who read my blog are also people who have read Quiet Hands by Julia Bascom. (I actually already linked to it in my own Rocking (and Flapping) at a 1000 Revolutions a Minute.) If you haven’t yet, please go do so either now or after you’ve finished reading this post. Julia got a massive response, as Quiet Hands went viral. It became very obvious that it was describing an experience that a lot of us have either experienced or have observed, sometimes unaware of the emotional and communicative consequences.
One of the devastating effects of the phenomena that Quiet Hands describes is how it silences Autistic communication. For many of us- and particularly those of us with verbal communication difficulties- our hands are our primary communicative tool1. We stim with our hands, we supplement our language with gestures and pantomime, we use languages like ASL with our hands, we type with our hands, and even utilize AAC devices with them. Things we do with our hands is how we connect with one another- even if that community building isn’t recognized by others. So when our hands are stilled, we are silenced and isolated.
What, with this context, does having “Loud Hands” mean? Obviously it would have to embody the opposite of- and possibly counter to- the silencing described above.
The Loud Hands Project (which is being run as a project of ASAN) demonstrates a pretty good idea of what it could mean to have Loud Hands. The project description defines Loud Hands as “autism acceptance, neurodiversity, Autistic pride, community, and culture, disability rights and resistance, and resilience.” Essentially, efforts that work counter to the silencing and discrediting that comes with a culture that denies Autistics the ability to communicate in ways that are natural to us.
The Loud Hands Project (LHP) is planning on being a transmedia project, spearheaded by Julia Bascom. The current focus is on putting together a written anthology that will serve basically as a foundation document. Submission guidelines/call for submissions for the written anthology went live on January 8th. They include a number of prompts on what it means to be Autistic and aspects of Autistic culture, but they welcome submissions that aren’t answering the prompts while still reflecting “questions about neurodiversity, Autistic pride and culture, disability rights and resistance, and resilience (known collectively as having loud hands.)”
From there, the plan is to focus on multiple mediums as a way of documenting and curating Autistic culture and community, particularly as related to the afore mentioned concept of what Loud Hands means. And I do mean curating- one of the stated goals is to collect and store some of the founding documents of the Autistic community.
Another major direction is looking to be video projects, starting with the trailer (more on that in a moment). I’ve noticed a lot of brain storming for future videos for the LHP media collection, but the actual non-written media submissions aren’t open yet. (Opening of those submissions is still to be determined.) They are welcoming your ideas/brainstorming for future non-written submissions though! Eventually I believe that they will join the trailer on the Loud Hands Project Youtube channel.
Fundraising efforts- LHP is using indiegogo- were launched December 26th with the video below. (You can read a visual transcription/description on tumblr or at the youtube page itself.)
In the first 24 hours, the indiegogo campaign raised over $3000- and over $6000 at the end of the first week. As of 9:30pm January 10th (when I’m composing this entry) it hit $7463 USD. Fundraising ends March 15th with a goal of $10000 USD. UPDATE: January 14th the $10000 goal was met. They are still collecting funds though- see the bottom of this post for more on this!
You can see the support levels, along with the number of people contributing at each level, at the LHP indiegogo page. Each support level has a different corresponding “reward” for your donation, ranging from a thank you email, to PDF pre-releases of the anthology, to signed hard copies donated to libraries in your name.
I personally feel that it is a much needed project, and am totally excited about it. As such, I’ve been trying to contribute in any way I can to this effort. I wrote the Visual Transcription mentioned above, as well as designing the Blog Badges (shown below) and writing most of the how to on using them.
.
.
.
.
.
.
.
.
.
.
.
.
.
I’m also (obviously) writing this blog post, and sharing it in my networks. Right now, LHP is on Twitter as @loud_hands and there’s a Loud Hands Project facebook page as well. (If you clicked through on my original link, you’ll notice that the Loud Hands Project is on tumblr as well.)
I think another interesting feature of the campaign is how various accessibility measures have been added.
The visual transcript for the trailer was requested before the campaign went live, which is kind of a big deal- while captions are becoming more popular, visual transcriptions are not as common. After all, they are time consuming to create- more so than image descriptions- and like image descriptions can be hard for people with visual processing issues to write. But they can be a big deal for visually based messages becoming accessible for the Blind, visually impaired individuals, and those with visual processing issues.
Additionally, there has been a recognition that language processing difficulties can be a barrier in sharing stuff like this. Two days after the campaign went live, scripts for sharing LHP‘s campaign went live.
This isn’t as uncommon to be accommodated, though outright recognition that it is an accommodation is, I think, less common. More often scripts get framed as “We recognize you are a Busy Professional Person™ who doesn’t always have time to handcraft sharing emails, so here’s an example you can use!” It has become something that, when present, isn’t seen as an accommodation, which would be great if it wasn’t for the resistance that those who do need this particular thing usually get when they have to ask for it. I think that in this context, the fact that the scripts are openly recognized as having an access function as well as being given in an overwhelmingly supportive manner in response to requests is significant.
And, of course, the blog badges have image descriptions and I’m going off to caption the lyrics to the song in the trailer via Universal Subtitles tonight. (Which means they’ll be up by the time this post goes live.)
I hope you’ll join me in supporting the Loud Hands Project. I hope you’ll link it, share it, tweet it, blog it, and post it. I hope, for those who have the money for even the lowest level of support ($10) , that you’ll donate. That you’ll encourage others to donate. And, once the fundraising campaign is over, that you’ll continue to support the projects of the Loud Hands Project.
I believe that we all should have Loud Hands, and that LHP is a great way to facilitate that. Not everyone is in a position where they can go and be safe stimming in public, or writing long blog posts, or have the supports to do speeches or attend protests or go to conferences like Autreat. But it is possible for some of us to do some of the little things- making a video or a painting, answering a mini-prompt, constructing things in our own natural languages that say, “I am here. I exist. I can be proud.” These are the core of what it means to have Loud Hands.
The big things are great. But sometimes it’s the little ones together that end up being the loudest.
1 I recognize that some of us also have mobility difficulties that make using hands in particular not something that is doable. If you can think figuratively, hands is a stand in for all the other non-verbal techniques that people use to accomplish the things we are talking about. Our hands here are not just literally our hands, but our own means of communicating. The same goes for words like “voice” and “speaking”.
UPDATE (January 16th, 2012): On January 14th The Loud Hands Project met their $10000 USD goal. That’s right, in 19 days you- the supporters- met a goal that was planned to take 80 days. Great Job!
Seeing how much our community needs LHP, and with encouragement from indiegogo, LHP is going to continue fundraising through the original March 15th deadline with benchmark goals at $15,000, $20,000, and $25,000. You can read the details on the projects at the Loud Hands Project blog, but they include more videos, more documenting of our community, more supporting Autistics pursuing community, and the launch of the website and all of the resources that will bring.
It’s exciting- exciting because we need it, and exciting because it means that we won’t have to wait for the anthology to be a success before LHP will be able to start bringing more projects to us.
A bit of this and that
My posts here tend towards single issue posts. I rarely post small things, or things I haven’t thought through or so on. (I use tumblr for that…) As a result, I post fairly infrequently- I post on big ideas that take a long time to find words for. But I feel like I ought to post something, so I am putting this post together out of pieces. Maybe it will lose me some of the things that people think of me but… well, I need to think something of all this as well, don’t I?
So, you are getting a post abut my latest DC trip.
I came down via plane on Sunday. I had NARP meetings all day Monday and half the day on Tuesday. I went down to the Occupy/decolonize DC site Tuesday afternoon, which I’m writing another post on.
Wednesday night was the ASAN 5 year anniversary dinner. I do have an album for pictures people took of me at the dinner on Facebook, but I didn’t have a camera myself. I believe that Melody Latimer is looking for photos from this event for the ASAN anniversary edition newsletter? (If you have any, send them to mlatimer@autisticadvocacy.org- or you can link/tag them?)

Since I arrived early, Claudia had me help with some set up stuff.
I personally was a little exhausted by all the social-making there, though Ari Ne’eman’s and Sharon Lewis’s speeches were fabulous. I was feeling a bit overwhelmed and had stepped out of the room for Alexa Posny’s speech, though. The desserts included creme puffs shaped like swans and chocolate covered mousse shaped like mice. Corina did take pictures of our desserts, but Corina hasn’t uploaded her pictures yet.
I also got to talk to Lindsey Nebeker, Lori Berkowitz and her partner Karen Hillman, Corina Becker, Lydia Brown, Lauren Gilbert, Melody Latimer, Kathryn Bjørnstad and her fiance Sean, and lots of other people. Food-wise, I rather liked these spinach things? I also discovered that Scotch and ginger ale is better than just Whiskey and Gingerale. Who knew?
Nancy Thayler was given the Outstanding Ally award, and Corina and Kathryn were awarded the Exceptional Services to the Autistic Community Award.
For anyone who was unaware, it was at the National Press Club in DC. It was probably the ritziest place I’ve ever been, and I’ve been to a dinner at the Ritz in NYC before.
Thursday night, 8 Autistics and one Allistic (Kathryn’s Fiance) descended upon Lindsey and Dave’s house for a total of 10 Autistics for dinner. Emily Titon cooked a Mango Curry Chicken dish. It was interesting to have so many of us all in that house being community.

Scott and I on our computers, while Melody, Kathryn, and Lydia... Do other things while being all Autistic community-y.
At the beginning of the night, we had a bit of a show and tell about stim toys and stuff. Lindsey also graciously let us on her and Dave’s wifi. We spent time in a couple of different rooms on the ground floor. The food took a long time to make, but it was delicious.

Between the Stim toy show and tell and later, I curled up like I do sometimes next to Lindsey's Piano. Lydia then took this photo.
The Next morning, I went to the Alliance for Full Participation conference with Emily and Scott. (Ari came later and helped facilitate a session.) The topic was inclusive employment, and it was rather interesting. I also got a chance to see my friend Bill Krebs while I was there, and introduced him to some ASAN people.
Speaking of “ritzy” places, it was held at the Gaylord National Harbor Hotel and Convention Center. Apparently it is the biggest Hotel and conference center on the eastern sea board? I don’t know but there’s basically a whole village in the atrium. They do have nice couches? Though I sat on the floor for the “Town Hall”. . .

Sitting on the floor at the AFP Town Hall.
The Town Hall was HUGE- most of the seats were filled and I didn’t want to have to attempt navigating to find a seat since there were already people standing. The crowd was a mix of self advocates, employers/business people, and providers. It was… interesting.
I also had a few side conversations with both Scott Robertson and Betsy Valnes (at different times) via my netbook and word pad. In fact on my facebook the above photo is labled, “At the AFP Conference Using word pad to communicate in a load crowded room.” (Emily, who took the photo, labeled it “Savannah, looking lovely as always.” I think I look like I have liver failure and no sleep.)
Later on, in a break out session, I sat in a group that focused on starting your own business. It was interesting I Think. While in that group, because it was an anxiety producing situation, I used my netbook and word pad for communication.
I am not at the conference today- I need the day to decompress before I take the train home tomorrow afternoon. (And yes, I do love taking the train- it is less expensive than the plane, too!)
I hope this not-so-issue centered post was okay to read. I find that I don’t particularly find this post all that great, but I did want to get the little slice of Autistics having/building community out there, and wanted to share a DC trip with everyone.




