8:56pm October 1, 2014

The words of a group of autistic people who learned to type using the Rapid Prompting Method (RPM) — what Tito Mukhopadhyay was taught by, except it doesn’t involve hitting people anymore (which is actively discouraged by the same woman who did hit Tito in the course of his “training”).

I always notice that parts of the autistic community that are more connected to the general developmental disability community, and are more likely to have been labeled as intellectually disabled as well as autistic, and those made up largely of those labeled low functioning, are far more racially and ethnically diverse than the “AS/HFA communities” (in name or in practice) that I’ve found online and offline.  The diversity in this video mirrors the diversity in my special ed school.  I don’t know what it is about the “high functioning” communities that attract so damn many white people and shut out so many people of color, but the “low functioning” autistic communities don’t have that problem.

Also please note that nobody is obligated to enjoy being autistic, especially if their main experience of being autistic is being trapped and unable to communicate their thoughts for years or decades when they have thoughts as complex to communicate as any “high functioning” person.  Lots of people who’ve gone years or decades with no communication system are highly ambivalent about their autism at best, and with good reason.. Not everyone, mind you, but that is a serious hardship to have to take on, and it’s not the same as having your speech shut down sometimes.  It’s never, ever being able to say anything important, even when it’s super important, even when it’s life and death.  And the people in these videos are the lucky ones for whom RPM was successful.  There are plenty of people who won’t ever learn to type or speak, and some of them are okay with that and some aren’t (judging from the words of people who were once in that category for a long part of their life and then came out of it).

Anyway, I’m glad this video was made.  All the words in the video are printed, not spoken.  They’re either superimposed on the screen, or writteon on boards.  So it’s not blind-accessible, and I don’t have the spoons to make a transcript.

And I’m reminded once again why autistic communities comprised mostly of nonspeaking people and people who’ve been in the DD system, tend to be more welcoming to me than other communities:  They’re more diverse.  Racially, ethnically, class, sexuality, gender, everything.  And that makes it so there’s a much wider space for me to make into my own, in these communities.  Even if they’re still not quite ‘home’.  And even if I still don’t quite fit because my life story isn’t the one people expect of a nonspeaking autistic adult.  But still.  Things like this make me ache for community.

Just where I can fade into the background.  That’s what I wish I could do.  Fade into the background, not be a big name, just be me, just be me around people who can mostly read me even when I’m not typing.  I’d love to find a community where nobody spoke and nobody typed for certain periods of time, whether they were ever capable of it or not, and nobody saw it as “Oh no people are overloaded we have to Do Something about this, it’s bad!”  People would just see it as “Words are tiring and we’re not made of words and we want a break from words.”

Of course RPM often doesn’t allow that, at least during training sessions.  They’re very big on not allowing autistic people a moment to process things, just shoving them to the next level as fast as they can.  And it works, and I know exactly why it works, and many autistic people would gladly take that temporary tradeoff in order to learn to communicate in words.  But many autistic people also need time away from words and that needs to be respected too.

TL;DR:  I like this video.  It’s by several nonspeaking autistic people who learned to type using the RPM (Rapid Prompting Method).  I have my misgivings about the RPM but it does get results and those can be life-changing for those it works for.  I miss communities (like AutCom) that form around autistic people who mostly haven’t been considered ‘high functioning’, there’s a definite difference in diversity and in how welcoming they are to someone like me, versus the less diverse and less welcoming “AS/HFA communities” (whether they call themselves that or not, that’s what they are).  I guess the perfect community for me would be the “I fluctuate between categories and eat their remains for breakfast” community but I haven’t found that one yet.  Love the video.  Keep them coming.  All the words were written by autistic people.  Until someone makes a transcript, this is Deaf-accessible but not Blind-accessible.

6:41am October 1, 2014

If I could draw you a picture of Exposure Anxiety, i’d draw you a rainbow unseen within heavy stone walls. Places in the stone where the cement had crumbled Chipped away and some of the colour had come streaming out Like a ray of light into the world.

I’d draw you a picture from inside a prison. An invisible prison with replica selves on the outside, Each a contortion, a distortion, Of the one you can’t see Who can’t get out

I’d draw you a face with a plastic smile, Perfect movements, A learned handshake And a gut full of despair and aloneness In a world that applauds the ‘appear’ at the expense of ‘self’; Suicide without a corpse.

— Donna Williams, Exposure Anxiety: The Invisible Cage
5:17am October 1, 2014

Exposure Anxiety

This is something I didn’t realize how much I had and I really need to reread Donna Williams’s book on it.  Last time I was too defensive to read it properly, especially when she recommended Risperdal as treatment, which made me too furious to continue.  Not that autistic people shouldn’t take Risperdal if they want to, but she’d been told it was a mild anticonvulsant (it’s not, it lowers the seizure threshold) and Risperdal has the potential for severe short-term and long-term side-effects including a severe worsening of autistic catatonia for anyone who might be experiencing catatonia.  And remember, lots of autistic people have catatonia without having autistic catatonia.  Catatonia is a set of motor traits that are exceedingly common in autism.  Autistic catatonia is a progressive amplification of those traits starting in puberty or young adulthood.

Anyway Donna Williams wrote a rough sketch of what the diagnostic criteria for Exposure Anxiety might look like, and I thought it might be useful for autistic people since many of us are prone to it.  This is a long post so it has a tl;dr at the end and a cut after the criteria.

If there were a diagnostic criteria for Exposure Anxiety it might fit the following:

A. Present from birth or infancy and persists throughout the person’s life span.

B. A marked and persistent aversion to directly confrontational attempts by even familiar others to share joint activities, communicate directly or cause self awareness, escalating from aversion to diversion, to retaliation responses.  (Note: this could also be present in abused children, those with attachment disorders, and those with information processing disorders, sensory perceptual disorders, sensory hypersensitivities or sensory deficits).

C. Involuntary avoidance, diversion and retaliation responses revolving around basic self help skills and toileting even in the absence of any social audience. May later be accompanied by a tendency to mirror others when they are doing these things (can’t do as oneself) or to attribute responsibility to others or to objects to achieve these things (can’t do for oneself).

D. A social style ranging from self isolation to seemingly aimless wandering to highly active, even sometimes seemingly socially threatening approach-avoidance behaviours.

E. A communication style which may include any range of the following:

  • Selective Mutism, mindless (even self-hypnotic) singing or self chatter.

  • Short, telegraphic bursts of speech.

  • Whispered, self directed, rushed or overly slowed speech to the point of being incomprehensible.

  • Highly characterised stored utterances or scripts.

  • Persistently impulsive communications which are offensive or distancing.

  • Obsessive anxiety-driven descriptive or intellectual litanies.  Artistic or typed expression far beyond what the person can express directly or verbally.

Note: Provided these are not better accounted for by Tourette’s tics, Semantic Pragmatic Language Disorder, Aphasias, verbal agnosias, Social-Emotional Agnosia, personality or conduct disorders, Alexithymia or other mood or anxiety disorders.

F. Exposure to uninvited praise and attention provokes immediate avoidance, diversion or retaliation responses. By mid-late childhood these EA responses may have differentiated into strategies of “can’t do ‘as oneself’, ‘by oneself’ or ‘˜for oneself’” in which praise and attention are tolerated when the person has assumed a role or character but not when they are caught off guard or when being themselves.

G. A phase in early childhood where there is no remorse for involuntary avoidance, diversion or retaliation responses but by mid childhood-puberty, self directed rage may result from progressive awareness of their own condition and desire but inability to escape it.

H. Avoidance, diversion and retaliation responses or strategies of “can’t do as self”, “can’t do by self” or “can’t do it for self” significantly interfere with the person’s ability to cope with change, transitions, demonstration of academic learning and skills, ability to function in employment, ability to gain or sustain general friendships, manage healthy parenting or sustain long term intimate or sexual relationships.

G. Involuntary avoidance, diversion and retaliation responses and depersonalisation strategies of “can’t do as self”, “can’t do by self” or “can’t do for self”, are not due to the direct physiological effects of any substance or other general medical condition and are not better accounted for by abuse or by other anxiety, conduct, personality, developmental, attention deficit, dissociative, attachment, mood or compulsive disorders.

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3:51am October 1, 2014

If the people who think I do my activism for fame…

…knew how much I’ve turned down.  (Don’t worry, this has the most concise TL;DR at the end I’ve ever made if you want to skip the post.)

Several people wanted the rights to my life story for film.

I’ve lost count of the number of film festivals that begged me to enter “In My Language,” and I didn’t, because exposure anxiety was too great already and I was near collapse.

The film crew that came all the way from Russia, and banged on my door as if they were trying to knock it down, rattling the lock, trying to get in, while I hid too terrified to breathe.  They thought sending a message to a Youtube account whose messages I never check, and not getting a response, was sufficient permission to trespass on the grounds of my building.  (They had to be thrown out three or four times and finally had management threaten to call the cops.  And they were running around asking people questions about me.)

The huge number of speaking engagements I’ve turned down.  For every one I accepted there must be ten I turned down.

I will talk to the media in rare occurrences where I think there’s more good to come from it than harm.  Sometimes I’m dead wrong about that, sometimes I’m right, but there’s also a cost-benefit analysis.  And it always costs me in privacy, in accuracy, in that horrible feeling that I’m a tiny animal trapped under an enormous eye that I can’t get away from that’s staring at me.

My dream would be to be unknown, totally unknown, to everyone except a few friends.  My writing would possibly be known, but nobody would connect me to that writing in the way they do.  They would read the writing, watch the videos, but not seek out the person who made them or become curious about me.  I would live in a tiny redwood mountain town with a tiny number of friends who maybe all helped each other out so that we didn’t need services, although I’ve seen such situations go sour so often that this is no more than a pipe dream for me.  

Or services in the redwoods would be better and I could live there and get those services and not have to worry about PTSD triggers like having a case manager in the DD system who briefly worked with me in the psych system and quickly tried to tell everyone she was an expert on me and knew me really well even though the extent of her involvement in my life was driving me home from a rec program a couple times.  But she had no conscience so a few lies never hurt her here and there, they just hurt everyone she came into contact with.  And living in the redwoods would mean living uncomfortably close to places I’ve been badly abused, such as institutions, and that would make my PTSD worse.  My PTSD got instantly 75% better moving into exile.

But anyway my dream is to live in some tiny place near (or possibly rooming with one or two and sharing support staff) only people I care about and who care about me.  Fame has no place in this dream.  Fame, even the fifteen minute variety, is a necessary evil.  Publicity is a necessary evil.  I’ve been told that running from necessary publicity is just as egotistical as seeking out unnecessary publicity, and I freely admit this is one of my big faults as an activist: I hate publicity and would run from it if I could.

I know, I know, I live my life on the Internet, and that’s public.  But it’s a different kind of public.  And practically everyone my age (late Gen X, early Gen Y) does it these days.  It’s just how many people live our lives, and it’s a godsend for those of us who are housebound, bedridden, or otherwise isolated from the rest of the world.  I build my tiny group of friends on places like tumblr instead of places offline.

I have webmuskie, feliscorvus, codeman38, alliecat-person, fullyarticulatedgoldskeleton, okideas, amorpha-system, clatterbane, bittersnurr, natalunasans, soilrockslove, and madeofpatterns, just off the top of my head, all here on tumblr with me.  That doesn’t mean other people aren’t my friends or acquaintances here or that I don’t value the relationships, remember I routinely forget my best friends exists so coming up with a list is daunting.  But these are mutuals I definitely feel a bond with, and that I’m always afraid I’ll break the bond by disappearing and forgetting people exist.  Tumblr helps me remember who exists.  

I was so happy when okideas and natalunasans joined tumblr because they were people I’d known forever and cared about but not been able to remember or keep up with and felt guilty when i did think of them.  okideas was part of the disability studies group where we “stole fire” from the academics who wouldn’t have let us into their classes on disability studies for various reasons (too uneducated, too sick, too low IQ, too autistic) so we made our own disability studies.  I still miss that group.  Natalunasans i met during the Autistic Liberation Front days on Second Life, back when it didn’t give me migraines and sap my energy to go there.  She was wonderful and rapidly became a co-moderator of our group.  She is generous and funny and all-around amazing.

And I wish we all lived in one place.  Like not a commune, just like, we all lived in separate buildings within walking or wheelchair of each other.  Never going to happen, but that’s my dream:  A private life filled with people I care about.  i am such the Hufflepuff at heart.

But I’m Gryffindor enough to stand in the spotliight when I have to.  When I have to.  Gryffindors strike me as people who’d want to do it, but that’s never been me.  Even when I did all my performances as a child it was never about the audience, it was about doing something I enjoyed that happened to be on a stage.  (I was a naive kid.  Still am in many ways.)

But if people knew the offers I’ve turned down, they’d never call me a publicity-seeker again.  I’ve had film festivals all over the world contact me, wanting to display my work or enter it in competitions.  Then there were the offers of book deals.

In other words, I have not been in any shortage of ways to increase my publicity, and I have turned down nearly every one.  You would not believe some of the offers I’ve gotten.  But I’m not that kind of person.  I’m not better than that kind of person, mind you — the flipside of ego is still ego.  But one thing I’m not is a publicity-hound.  Anyone who thinks I am should understand that I only say yes to one out of every twenty or so offers I get, and that may be a generous estimate.  And I always do it for the good of the community, not for myself alone, whether that comes through in the finished product or not.  

(Too many times, the finished product is an awestruck but totally inaccurate synopsis of my life.  What annoys me about that is I spend a lot of effort telling them things like “I used to be able to talk,” only for them to treat me like I’ve been nonverbal my whole life, and then people read it and either think I’ve been nonverbal my whole life, or, if they know the truth, think I lied to the reporters.  Lots of things like that happen.  And often the focus is more on me than on the communities I’ve tried to focus on in answering my questions.  My least favorite one was when I told CNN very clearly that I made “In My Language” for Ashley X, and they said very clearly in their broadcast that I made it “to bring people into my world of autism”.  Which sounds more like a Sue Rubin quote than anything I’d ever say in a million years.  I guess Ashley X was too political?  She’s right there in the dedication.  I still remember this guy who responded to IML by saying “It’s a great video, but why’d you have to dedicate it to Ashley X? That ruins the whole thing.”)

Anyway, I was just musing tonight on the number of ways I could have become a lot more famous if I’d wanted to, and the number of people I ignored or turned down because I couldn’t stand the feeling of being watched by the whole world.  Like even when my video went viral, I found myself hiding under the desk and poking my head out now and then to check the number of viewers, which kept spiraling upwards.  The weird thing was that everyone else, including especially my stalkers, seemed to predict that I’d “get famous soon”, and it totally blindsided me when the media came knocking on my door.  I still don’t think what I am really constitutes famous, unless you mean 15 minutes of fame.  But it’s big fish in a small pond.  Or at least it was, for awhile.  I’m not sure if I’m fading into the background with the rest of the old guard of the autistic community.

Anyway, the above is my actual relationship to fame, the stuff people didn’t see, precisely because I didn’t say yes to it.  I said no to far more than I said yes to.  And I only said yes when I thought some good would come of it.  I was so disappointed when CNN promised they’d show more of the autistic community, did all these interviews of people at a conference, then focused entirely on me, and everyone else if they were mentioned at all were people who were “inspired by me”.  It made all of us feel betrayed, and I think some of them felt I’d betrayed them since I brought CNN there, but I felt more betrayed than anyone.  I knew the amount of work it took people to give their time and effort to interviews, especially people for whom typing is a grueling, super-slow, and exhausting practice.  And some of these people were people they could have got excellent quotes from, probably did get excellent quotes from.  I’d hoped they’d show a vibrant and interesting autistic community, but instead they mostly showed me moving through that community.  Including me having a screaming head-banging meltdown in the bathroom (they held the boom mic up to the bathroom door, no privacy) after they changed my presentation partner on me to someone who believed wholeheartedly in guardianship and spent her entire presentation Not Like My Childing me.  (Instead of the partner I was supposed to have, a severely disabled man with no guardian, and he and I were supposed to talk about how to avoid guardianship.)

Anyway… yet another tangent, but this is why I don’t like dealing with the media.   The media had their part in making it sound like the world revolved around me, and a lot of people who don’t know how the media works, assumed I was the one deliberately giving that impression.

After that experience, I rarely fault an autistic person for what the media says about them.  Because the autistic person may have said entirely political things and been twisted into inspiration porn or a sob story.  And the media misquotes people all the time, or puts words in their mouths.  Sometimes they even quote one person as saying what someone else said, and then people think the first person must have stolen their words from the second person, when it was the writer who did that.  So don’t ever trust too heavily in what the media has to say about autistic people.  And don’t ever tear down an autistic person because of a media portrayal.  Autistic people tend not to be media-savvy and we fall right into this stuff.  I was told by some autistic people I “should have known better”, but that’s more of that “I think you’re smart, so you can’t possibly have gaps in your knowledge about the world” thing.  I knew nothing of how fictional media representations are until I was involved in them.  Even news stories will do multiple takes to get just the right shot of your staff walking out the door saying goodbye.

I have to say, by the way that the most respectful and accurate portrayal I got was done by the CBC.  They weren’t perfect (and their montage of my staff person cleaning up the house made it look like she did nothing but clean) but they really tried to listen to me and the other autistic people they interviewed.  And they tried to present our side of things as fairly and accurately as they possibly could.  They were the last people I worked with before I swore off of media for awhile.  And if it hadn’t been that I was just recovering from a major health crash (the adrenal insufficiency/myasthenia clusterfuck of 2008) and was trying to pass as more able-bodied than I was (for fear of seeming vulnerable in front of my stalkers), it would’ve been an outright enjoyable experience.  They were nice, they were physically unobtrusive (unlike Sanjay Gupta, who tried to be nice but had no concept of personal space and burned me out badly by leaning in so close to me that the sound lady said she was picking up his words in my microphone… then he wondered why I was rocking and avoiding eye contact).  They were just good people, especially for media. I don’t know if all of the CBC is like that but I’d recommend them if they are.

Anyway I have far too much exposure anxiety to feel comfortable with media exposure or fame.  Any venture I make into that territory is something I pay a price for.  When CNN came I barely ate for weeks (not that anyone notices when a fat person loses hir appetite).  So any time I’m in the media, it’s because I’ve taken a calculated risk for some greater good that I hope comes out of it.   With CNN it was exposure for the autistic community and our ideas about autism — only mildly mildly successful in accomplishing that, turned into a supercrip (superautie?) whose only contribution to the autistic community is to inspire others to look up to me.  At one point D. J. Savarese and I were clearly writing about political organizing on Skype, and somehow they tried to twist that into inspiration porn too even though you could hear our computerized voices in the background talking about political organizing to tell our own stories.  After our experience with the media, D.J. and I agree that telling our own stories is more necessary than ever, having control of our own stories, not the media, not professionals, not parents, just us.

TL;DR:  I have turned down more opportunities, by far, for publicity, than I have ever, ever accepted.  Make of that what you will.

4:06pm September 29, 2014
Anonymous asked: what is autistic culture? i'm not from the us and never even heard of it.

It’s not a US-only thing.  It’s … um … here’s an example:

3:57pm September 29, 2014
Anonymous asked: Why do you say that? (The post about autism culture)

I guess not all sorts of autistic culture are things I totally disidentify with.  But everything I’ve ever heard called Autistic Culture (tm) by large groups of autistic people, and celebrated as such… meh.  It’s always stuff created by and for other types of autistic people.  Which is great for them, and I don’t want to deny them their cultures that they’ve created.  But I never seem to fit.  And I’ve had people try to force me to think I ought to fit, and that never ends well either.  There just haven’t been a lot of autistic cultures created that had autistic people like me in mind.  Instead of finding myself in a big autistic culture, I’ve had to find myself with individual autistic people I clicked with.

3:37pm September 29, 2014

Survey for autistic people only (that means autism, PDDNOS, Asperger, ASD, or any related diagnosis).


The following is what I was sent as a PDF file, I’m passing it on in case anyone here wants to fill it out:

Are YOU an Adult 


Aspergers Autism PDD-NOS? 

Do you ever wish research on the autism spectrum reflected 

YOUR attitudes, experiences, and opinions? 

You are invited to participate in an online research study about the experiences and attitudes of individuals on the autism spectrum. Little is known about how adults on the autism spectrum think about themselves or their experiences. Little is also known about how individuals on the autism spectrum view the diagnosis. 

Your participation in this study may help advance understanding of the perceptions and experiences of adults on the autism spectrum. 

To participate in this study, you need to: 

 Be age 18 or older 

 Have a diagnosis or identify with a diagnosis of Asperger’s Syndrome, Autism, or PDD-NOS 

 Be able to complete an online survey 

Participation in this study includes a chance to win a 

$100 Visa Gift Card. 

To participate in this study, please use the following link: 

I was given this by my case manager and I did take the survey so I thought it was legit.  It didn’t collect any information about me besides my email address and that’s optional.

1:39pm September 29, 2014

Survey for autistic people only (that means autism, PDDNOS, Asperger, ASD, or any related diagnosis).

The following is what I was sent as a PDF file, I’m passing it on in case anyone here wants to fill it out:

Are YOU an Adult 


Aspergers Autism PDD-NOS? 

Do you ever wish research on the autism spectrum reflected 

YOUR attitudes, experiences, and opinions? 

You are invited to participate in an online research study about the experiences and attitudes of individuals on the autism spectrum. Little is known about how adults on the autism spectrum think about themselves or their experiences. Little is also known about how individuals on the autism spectrum view the diagnosis. 

Your participation in this study may help advance understanding of the perceptions and experiences of adults on the autism spectrum. 

To participate in this study, you need to: 

 Be age 18 or older 

 Have a diagnosis or identify with a diagnosis of Asperger’s Syndrome, Autism, or PDD-NOS 

 Be able to complete an online survey 

Participation in this study includes a chance to win a 

$100 Visa Gift Card. 

To participate in this study, please use the following link: 

2:40am September 29, 2014

"Autistic Culture" is not my culture.

And never has been, and never will be.  Would that someone had told me this sooner, it would’ve saved me a lot of heartache and grief.

11:36pm September 28, 2014

An anti-skill that it helps to know of, and be rid of.

Lots of disabled people pick up anti-skills:  Skills that actively hinder us in getting through the day.  And this one has to do with communication.

I notice it when I’m talking to someone.

I’ll start a sentence, and before I’ve gotten five words in, they’re interrupting me and telling me they don’t understand.  They get extremely agitated and the more I say, the more they say they don’t understand.

But when we talk about it, it will turn out that they didn’t understand one word or phrase in a long sentence or paragraph.   And if they had listened to the entire sentence or paragraph, they would have understood what I meant, because the part they didn’t understand was either nonessential, or something that you can pick up from context.

I know about this because I do it too.  I freak out about not understanding something because of a few words at the beginning don’t make sense to me.  When if I just continued listening, in many cases I would understand.

This doesn’t mean I’ll always understand.

This doesn’t mean it’s okay to bully disabled people for saying we don’t understand things, or to grumble at us “Just keep listening and you’ll get it.”

But there’s got to be some way to find a middle ground.

For the speaker to be able to communicate, “There’s more coming and it’ll probably make more sense in the end.”

For the listener to be able to slow down and not freak out at the first sign of a word they don’t understand, and to see it through to the end, then figure out if they understood everything or not.

But I have no idea how to navigate such a touchy conversational situation from either end.  The listener is used to being considered stupid and told what to do, including “use context clues”, that can get insulting after awhile.  Even though in this case the advice may be totally valid.  Meanwhile the speaker is trying to contend with an increasingly frantic person freaking out about something that may not be worth freaking out about in the end.

Very confusing social situation from either side.  But the freaking out is definitely an anti-skill, whether the person is right or not that they will not understand what’s being said.  Because the freaking out doesn’t solve anything, it just makes everyone more tense.

How to unlearn this, and learn better ways of handling the situation?  I have no idea.

Could #realsocialskills weigh in if you have the chance?

7:35pm September 28, 2014

“It was like the devil came in the night and stole my child’s soul.”


Talking to the parents of children with regressive autism is scary but important (via dimyway02)

Try being the person with regressive autism.  Try standing there right in front of people while they say that your soul doesn’t exist, that you are not in your body, that you are a shell of your former self.  And wanting to punch them in the eye for having the nerve to act like you don’t exist anymore, but not being able to.  (Or doing so, and then being accused of having “unexplainable aggression” which goes more towards having “no soul”.)

NEVER talk about autistic people this way.

NEVER say we don’t have souls.

NEVER say we’re vegetables.

NEVER say we aren’t the person we used to be.

NEVER say you want the “old you” back.

NEVER say these things.

And never repeat these things as if they’re some kind of profound observation about what it’s like to be someone related to us.  Think what it’s like to be right there, with everyone and having everyone around you talking as if you’ve been stolen, as if you’re not the real you anymore, as if they need to go find the real you and bring you back, as if who you are is an empty shell, a vegetable, a vacant body with no soul.

This is not profound, it is disgusting and sickening.

Signed, a ‘regressive’ autistic who is still routinely treated as an empty shell with no soul or thoughts or emotions of my own

(via youneedacat)

I literally forgot I’d written this, and then was reblogging it thinking wow this is right on, and then realized I wrote it.

2:33pm September 28, 2014


A week or so ago I was reading a journal article* about a study on autistic adults’ “quality of life” that pointed out that earlier such studies made the mistake of assuming that autistic people wanted the same things as non-autistic people, and that it was better measure of “quality of life” to take into account whether or not autistic people were satisfied with their lives, regardless of whether their lives fit into some kind of “normal” pattern. I remember thinking, “Yeah, good point” — but as I continued to read, it started to occur to me, “But wait a minute, just because someone isn’t satisfied with their life (and who the hell is even satisfied with their life, anyway), that doesn’t mean their life has low quality.” I thought about my own life. I’m generally unsatisfied. I’m generally not a happy person. But do I think my life has low quality? No! Even if my life were a miserable tragedy-fest — which it isn’t — I still think I’d be bothered by the suggestion that I had low quality of life.

I don’t think life has some kind of specific “quality” that can be measured. And I think it’s just such a disgusting, disturbing concept, “quality of life.” It’s also a dangerous concept. People use “but they have such a low quality of life!” as reason for why a disabled person shouldn’t have access to life-saving surgery. Even if a disabled person was mostly unhappy and unsatisfied with their life, even if they hated their disability — the mere fact that they would *want* to have life-saving surgery should tell you that they think their life is worth living. So let’s just get away from this “quality of life” crap, shall we?

*Didn’t save the link to it, sorry.

Yes to all of that.

And it’s not like happiness is necessarily the thing we should all be striving for anyway.

I would rather strive for things like helping other people.  I am a fairly happy person at this point in my life, and that is a nice thing.  And being too unhappy is a bad thing, obviously to be avoided where possible.  But I’m not sure happiness should be how we are measuring lives.

Also a friend of mine said that if you actually want to be truly happy, you actually have to stop caring about your own individual happiness and start caring more about others.  Which sounds paradoxical, but I bet it’s true.  But caring more about others seems like a good idea in general.  Not to the point that you harm yourself (except in specific situations), but just because it’s a good thing to do.

6:27pm September 26, 2014

The stress and being sleepy thing


Someone (youneedacat, I think?) wrote recently about getting really tired as a type of stress response. What IS that even about? Because I am pretty sure that happens to me, at least some of the time.

Right now I am effing exhausted despite having slept a decent amount and being adequately fed and coffee-enabled and everything. (And I don’t have a fever, I checked). And I think it’s because I’m stressing out about my senior cat (who is probably having surgery next week to remove a suspicious mass that could be feline breast cancer, basically).

And it’s making me remember this thing that used to happen to me in school. Where essentially, I’d get to class and find myself just feeling overwhelmingly sleepy. Sometimes the stuff I did that I got in trouble for (like getting up and wandering around the room, reading unrelated books under my desk, etc.) was stuff I was doing *just to stay awake*, because trying to sit at my desk made me feel like I was going to fall asleep any second. The weird part was…basically as soon as I got somewhere quiet or with less people in it (like if they sent me out in the hall due to fidgeting) I would have a ton of energy again. o_0 So now I’m thinking maybe the tiredness was a response to overload, because I also used to get it when I was out with my parents. Like when we would go to amusement parks and stuff…after a few hours I’d basically get super “draggy” and would want nothing more than to go back to the hotel. I would sometimes get so “tired” that I’d start feeling nauseated just from walking. But again, as soon as I got somewhere less overloady I’d feel much better. 

The thing that puzzles me about this is what the mechanism could possibly be. I mean is it due to certain brain chemicals being depleted by stress and then restoring their usual levels when the stress is reduced? How can that even happen that fast? I guess it could be one of those things where a sensation of one thing manifests in a weird way because autism, but it would be interesting to know how the hell this even works because I’m sure it’s a real thing.

Oh wow — all of that is true of me as well, by the way, including getting sleepy in classroom situations and doing weird things to try to keep myself awake and getting in trouble and everything.

Although when I have a really severe sleepy-stress-response I don’t bounce back very fast at all.  But then I don’t make cortisol anymore.

12:17pm September 24, 2014

people might not understand your body language


Body language that comes naturally to some autistic people can be completely invisible to most neurotypical people.

For example, many autistic people respond to questions by nodding their head very slightly. It can feel like a bigger movement than it actually is, and sometimes people don’t notice it. If you’re nodding and people are ignoring you, it might just be that they don’t understand your body language.

Similarly, neurotypical people don’t usually understand the range of things that flapping and various forms of stimming can mean. They tend to read it as distress or as annoying behavior. They don’t usually understand it as body language. Since they lack the skill to understand body language correctly, it can be worth telling them things explicitly.

For instance, if someone doesn’t understand the kind of flapping that means hello, it might be worth saying hello with your voice when you want to greet them.

Sometimes NTs intentionally ignore autistic body language, but sometimes they just don’t understand it.

This reminds me of a situation where I’m honestly not sure if the person was being honest or not, because she was certainly trying to bully me and Laura was actively interfering with the bullying.

But at one point Laura told her exactly what I was thinking, and explained that she understood it from my body language.  .

And the social worker/bully said, “You can’t possibly have gotten that from her body language.  She has no body language to interpret!”

11:01am September 24, 2014

I’m posting this to actuallyautistic tag to ask for your help.

Laura Tisoncik was one of the earliest people to form an entirely politicized group of autistic people.  By which I mean, not a social group, not a support group, but a group that saw autism (and disability in general) as a political issue.  She started, the first wholly political autism website, as well as the Institute for the Study of the Neurologically Typical and the Autistic Liberation Front.  Many ideas that are mainstream now in the autistic community, are ideas that we at came up with and had to fight to get accepted by other autistic people.  For instance, the idea that functioning labels are a bad idea that doesn’t actually make any sense anyway, that was one of ours, and now it’s quite widely accepted among autistic self-advocates.

Anyway, Laura now has cancer.  It’s in an early stage where the standard treatment is hysterectomy.  Her oncologist is refusing to do a hysterectomy because she’s fat.  Hysterectomies are done on fat people all the time, this is pure sizeism and fatphobia.  And it could kill her.

tumblr saved my life once before, and Laura was instrumental in making that happen.  She had people contact the hospital and make sure they knew that people were watching them, when they were trying to talk me out of life-saving treatment (a feeding tube).  Within days, the hospital suddenly gave me the feeding tube.

I want tumblr to save Laura’s life too.

Here are the relevant posts:

If you don’t want to help, or if you want to yammer on about how fat is unhealthy or that she ought to lose weight (if she lost weight she’d still have cancer, so shut it — and there is no way for her to lose weight given her medical conditions, anyway) just don’t bother, keep your thoughts to yourself.  We’re trying to save her life.  What she needs is a hysterectomy, not strangers who don’t even know her situation, pontificating at her from afar about what her life ought to look like.

So if you can help, help.  If you can’t help, that’s fine.  If you don’t want to help, don’t help.  If you want to do harm, just stay away and don’t be an ass.

I’m posting this to #actuallyautistic because I think there’s people there who remember her, or who understand what she’s done for the autistic community over the past 15 or so years.  Which is a lot.  Not just the political stuff, she also helped a lot of autistic people in need (well, that is a part of any decent political organizing). And now she’s the one in need.