2:26am February 8, 2015

What People Think They Know

This is the post I was actually looking for when I found the post “A Tale of Three Experts”.  It likewise has to do with how people perceive autistic people in different contexts.  It was originally posted to Ballastexistenz on March 13, 2007.  Here is a link to the original post.  Everything after this point is the original post:

Ann and Marcos both work in the same office building, but not in the same office. Ann sees her co-worker, Joan, on a daily basis. Joan says hello to Ann in the morning, sits at her desk, does her job, speaks politely to people throughout the day when needed, and seems just like every other worker in the building.

When Marcos goes on his lunch break, he walks through a park, where he sees a woman every day. She is often crouched on the ground and lining up sticks in particular patterns. Sometimes she lies on her back and flicks objects in front of her eyes. He sees the same woman while he is walking home sometimes. Her hands are moving a mile a minute in unusual patterns while she repeats the same words over and over. He has tried to say hello to her, but she doesn’t respond.

Ann does not see Joan’s legs moving around constantly under the desk, or her right hand constantly gripping or twiddling something, also under the desk. She does not see that when Joan goes into the bathroom, she’s not actually using the toilet, but practically collapsing in exhaustion before going through a frantic series of movements and activities that she’s been suppressing all day, all carefully timed so that she doesn’t appear to be spending too much time in there. She does not see that much of the time when Joan doesn’t talk, it’s not because she is just busy working, but because she actuallycan’t talk any more than the demands of the day already put on her. She actually has a very limited ability to speak and uses it for the very few verbal exchanges required in her job, which she performs flawlessly, but which she could not perform many more of before speech would break down entirely. She does not see where Joan goes on her lunch hours, and she does not see what Joan looks like as she is walking home, because she lives in a different part of town than Joan and drives rather than walks.

Marcos does not see Joan at work. He does not see that she competently performs the duties of a secretary all day when she is not at lunch or walking home. He does not see her recognizing the existence of other people, nor does he see her speaking in an intelligible or communicative way. He does not see her sitting quietly at a desk doing her job.

But if Ann and Marcos are like most people, they think they know pretty much all there is to know about Joan’s life.

Ann thinks that Joan is a standard-issue, non-disabled person, maybe a little nervous or quiet but not overly so, and assumes that she is capable of a number of things throughout the day that Ann never actually sees her doing, but just imagines over the top of Joan.

Marcos thinks that Joan is “crazy”, “retarded”, or “autistic”. He assumes that she probably doesn’t have a job, he might not even think she has a home at all, and if she does, he imagines that she probably lives in a group home.

Ann is stunned to find out that Joan is autistic and does not believe her. She says that Joan is clearly capable of all sorts of things she’s never actually seen Joan do (but is utterly sure that since Joan does a certain limited number of other things throughout the day, then Joan can do them all day long and do a number of other things besides) and that Joan is probably one of those trendy self-diagnosers out there. Marcos is stunned to find out that Joan has a job requiring a fair bit of intellectual work and can carry on a coherent conversation. If Ann and Marcos had a conversation together, and both mentioned Joan, it is unlikely that they would realize they were talking about the same person.

Yet that is what I see happening all the time. People see a very tiny amount of a person’s life and assume they know the rest.

This is why I agree with Cal Montgomery in an article she wrote, A Hard Look At Invisible Disability. Some people take that article as being about “the position of invisibly disabled people in the disability rights movement” (I know because I’ve seen it written about that way). That’s not what it’s about.

It’s about the idea that “invisible” disability is a misnomer. It makes it sound like there’s something intrinsic to the person that makes their particular body type impossible to perceive. In reality, the people not seeing that someone is disabled are not seeing it in part because they expect people to be non-disabled until shown otherwise. The “invisibility” is not intrinsic to any sort of “disability” (either social-model or individual-model), it’s dependent on context and on the assumptions of the person perceiving it. To call it “invisible disability” is to make the invisibility about the disabled person, rather than about the people who are interacting with the disabled person and the assumptions they bring that makes that person look disabled or non-disabled to them. The assumptions create visibility and invisibility, the actual body of the disabled person doesn’t.

To give an example of the opposite assumption, by the way, you only have to look at how I perceived people after I had been in institutions and special ed for awhile. I would walk down the street, and see all kinds of people. I would expect every single one of them to be disabled. I would expect each one to start behaving unusually or shrieking or rocking or something. I was more surprised (and alarmed) when they didn’t than when they did. Around me, nobody could have been considered “invisibly disabled” because I assumed everyone was disabled until proven otherwise.

And now — today — when there is something that I don’t know about someone, I mostly leave it as a blank space. If I see someone at work, I don’t assume that I know what they are like on their breaks or at home or even when they go to the bathroom. I don’t assume that I know their level of fatigue, overload, pain, or emotional distress. I don’t assume that just because they can talk to me in one situation means that they can talk — to me or anyone else — in another situation or for another reason, or that just because I don’t see them talking at some point, that somehow that means they couldnever talk in any circumstance.

What I don’t get is why it’s so necessary to fill in those blanks. What’s so awful about blank space? What drives people to shock that someone of a certain appearance can do something totally unrelated to that appearance, or to disbelief that someone who “appears normal” to them in a highly limited set of contexts is actually disabled (and possibly unable to “appear normal” in any other context or with any additional demands placed on them)? Why do people smugly insist that they know so much about other people, based on incredibly limited evidence?

Edited to add, years later: For another blogger’s take on the same phenomenon, read That Which Goes Unseen by Dora Raymaker.

93 notes

3:10am December 31, 2014

“Decrease, that’s Dr. R. alright…”

-a nurse at a mental institution I was in

Dr. R. knew what it was like to have to live most of your life on medication.  He didn’t feel quite like himself on his ADD meds. And he badly needed them in order to work at his job. Even with the meds his secretary had to work harder than most secretaries to accommodate him. Off his meds he literally could not complete a full sentence because his mind and interest raced from one topic to another so fast his mouth couldn’t keep up.  So he took “medication holidays” most weekend where he wouldn’t have to have many responsibilities that required concentration.  And his ADD was more severe than that of most people I met, so it wasn’t just a case of “I could function without my Ritalin, I just choose to take it or not on a whim.”  He could not function without it, he needed constant assistance from others without it.  And yet he still chose not to take it some days, because he found that he felt like too much of a different person on the meds, a person he couldn’t fully recognize or identify with.

As a result, he preferred to give his patients as little medication as he could get away with.  As in, the bare minimum to help the person function, and if it was not helping the function and he knew it, he would taper them off it altogether.

The nurses and psychiatric technicians who hung out behind the nurses station and gossiped constantly (but who suddenly were “busy charting” if a patient needed help)… I spent a lot of time in isolation rooms that had a door opening into the nurse’s stations.  And the nurses and psych techs loved to use neuroleptics (a.k.a. antipsychotics, major tranquilizers) and minor tranquilizers (a.k.a. sedatives, hypnotics, etc. stuff like Ativan/lorazepam) in order to incapacitate patients and make us easier to manage.  So one day, when I was tied down an isolation room just behind the nurse’s station, I heard them talking about Dr. R.’s decision to decrease one of my medications.  

Dr. R. had noticed, and written in his admission and discharge summaries, it went something like… “We’ve found that the amount of  medication required to control Amanda’s destructive behavior is uncomfortably close to, and sometimes exceeds, the amount of medication that renders her completely incapacitated.”  Well, yeah.  Neuroleptics work to control behavior.  And they are now and have been for at least ten years, been recommended for autistic people’s aggressive behavior towards ourselves or other people.  Eventually getting to the point where some doctors only know they’re prescribed “for autism” and prescribe them to all their autistic patients, which is horribly irresponsible.  Anyway, neuroleptics work to control autistic people’s behavior – and other people’s behavior.  They’re rampant in the developmental disability world for auties, people with intellectual disabilities, people with cerebral palsy, people with severe multiple handicaps, etc.  

And they work to control our behavior by disrupting the links between thinking and acting.  A person on neuroleptics may look tranquil, hence the word ‘tranquilizer’.  But on the inside, we may feel lost, confused, as if our mind has been scattered to the winds and we can’t find all the pieces and put them back together again, agitated, restless, furious, terrified, all these things at once.  But it won’t show on our face or body unless we get the side-effect of akathisia.  But so few people know about akathisia (severe restlessness that can escalate to violence) that they’ll take the akathisia as a reason to give more of the drugs that are causing it in the first place.  

Akathisia can become permanent, too – it’s a myth that tardive dyskinesia is the only permanent side-effect of neuroleptics.  (“Tardive” basically means symptoms that appear slowly rather than all at once.  The tardive movement and cognitive syndromes that can occur in neuroleptics are often permanent, even if you remove the drug.  There’s also acute versions of the same conditions, that do go away when you remove the drug.  Acute akathisia vs. tardive akathisia, for instance.)  The tardive syndromes I’m most aware of include:

• Tardive dyskinesia, which can range from a slight involuntary movement at the edges of the tongue, to full-body contortions that are so severe they can inhibit breathing and kill people.
• Tardive akathisia. That same psychological and motor restlessness, only it doesn’t go away once you stop the drug.
• Tardive dystonia.  Any form of dystonia (a movement disorder, I’m too tired to Google it and give you information) that remains permanently after the drug has been discontinued.
• Tardrive dementia.  Cognitive impairment that does not go away after the drug has been discontinued.

When I say “does not go away”, I don’t just mean the first year of being off of these drugs.  I mean that it doesn’t go away pretty much ever.  It may improve to an extent going off the drugs, but then plateau and stay at the same level.  It may actually get worse going off the drugs, because some of the drugs have effects that mask the full extent of the tardive dyskinesia or other tardive syndrome.

And did I mention that neuroleptics are generally a bad idea for autistic people with catatonia?  Yeah.  Not that they knew that when they were busy loading me full of thee drugs.  Because there were only two papers out on autistic catatonia at the time, and it didn’t even have the name autistic catatonia yet.  The first article that wasn’t a case study, came out about a year after I stopped neuroleptics.  But it explained why (I didn’t notice this, but my whole family did, so it must be real) the moment I went on neuroleptics – not even long-term, just my first dose of Thorazine  and Haldol for behavior control in a (different from the above) mental institution.  The moment I took them apparently my motor skills took a nosedive they’ve never recovered from.  It was like they accelerated the progression of the autistic catatonia.

I know someone else with autistic catatonia.  They were on Mellaril throughout a lot of their childhood.  It was only after someone decided to take them off of it, that they learned to use speech for communication.  They were twelve years old at the time.  In my case, I began showing obvious symptoms of autistic catatonia (not “catatonic traits that exist in all autistic people”, but actual deterioration of my motor and speech abilities) at the age of 11 or 12.  I was first given neuroleptics at the age of fourteen.  Which made me lose skills much faster.  When I went off of them at age nineteen, I had a period where everything got much, much worse, and then a gradual period of things getting better, and then I went back to my previous pattern of one step forward and three steps back, when it came to losing motor planning skills.

Anyway, I just remembered the scorn heaped on Dr. R. by the nurses, because he made it very difficult for them to use chemical restraints for their own convenience.  Shortly after this happened, they resorted to deliberately escalating situations – such as grabbing me and hauling me to the isolation room for no reason at all, with no warning at all – and if I struggled, at all, then I was a danger to others and it was okay for them to tie me down and drug me.  Dr. R. was not happy about this, so he assigned me and another patient who was getting treated similarly, a one-to-one aide from Visiting Nurses, who could take notice of anything the institution staff were doing to control me.  One day one of those aides saved my life, but that’s a long and traumatic story I have no interest in rehashing at the moment.

Suffice to say, for Dr. R.'s patients, “Decrease , that’s Dr. R…” was a good thing.  He didn’t always succeed, and he had all the dangerous biases that decades working as a psychiatrist would give a person.  But he tried.  He tried to give the smallest amount of a medication he could, that would still work, and he’d work with you on “drug holidays” if that’s what you and he felt you needed.  So despite his shortcomings – ones he shared with most in his profession, unfortunately – he was still the best psychiatrist I ever ran into.  It wasn’t just the ADD either – he grew up with a speech impediment and social problems, and he had attempted suicide at least once as a teen.  When he heard about the autistic community’s use of the word “cousins” (people who are not autistic but share many autistic traits, especially perceptual or social traits), he said he was a cousin.

And he’s the one who helped me get off my psych drugs in the end – all of them.  It was harrowing, even tapering slowly.  But we both acknowledged it had become a “the old lady who swallowed the fly” situation – most of the drugs were to treat side-effects of other drugs.  In psychiatry there’s an unfortunate tendency to look at side-effects as “this always existed and the drug just unmasked it”.  Like… my neurologist gave me a migraine drug once, Topamax, that changed my personality in a very severe way.  And when my friends told him what was going on, he just said “Discontinue it, immediately.”  Within psychiatry, those personality changes would’ve been said to be an underlying psychiatric condition that the Topamax unmasked, and I’d be given drugs to “treat” that condition, which would then “unmask” more conditions I didn’t really have, and so on.  So he helped me get off of everything.  He believed in me even when people were saying the withdrawal symptoms were proof I belonged on the drugs after all.  He stuck with me the entire year it took for me to get back to what was now normal to me.  He continued to make some major mistakes, but now that I was a legal adult and off of my meds enough to think clearly, I was able to get away from those mistakes in a way I hadn’t been able to as a child.

I never became the next Temple Grandin, which is what he wanted me to be.  But I think if he’s still around (he was old and had a heart condition, so he may well be dead), he’d be proud of what I’ve accomplished in self-advocacy and research alike.  And he’d be glad that my physical problems were finally being diagnosed for what they were – he’d early on had to help me fend off doctors who believed my physical problems were psychiatric in nature just because I had a developmental disability and a long psych history filled with diagnoses and misdiagnoses.  I hope he got a chance to watch at least some of that unfold.  I lost touch with him after he retired.

Anyway… I’m still proud of him for decreasing my meds and helping me get off of them, and believing in my ability to get off of them, even in the face of overwhelming pressure to do the opposite and have me so sedated (actually, at that point, twice the toxic dose of a neuroleptic, plus another neuroleptic on top of it) that I was falling asleep everywhere and having atonic or myoclonic seizures every few minutes when I was awake.

I’ve always been ambivalent about him – he seemed like a character in a book who is good but has a tragic flaw – but in this area, I am absolutely happy with the majority of decisions he made.  The majority, mind you.  But that’s more than I can say for any other psychiatrist I’ve ever had.  I really lucked out, because he was rarely on duty, and the night I came in I was assigned to him because he was on duty that night.  He instantly figured out that I was autistic (even though I was there for suicidal behavior), he saw me as something akin to an “idiot savant” (his words, not mine), and he developed a strong bond with both me and my family that carried us through some of the worst bullshit we encountered in the system.  Which was good because, as my mother pointed out, my parents were never educated in how to deal with an autistic teen with a seemingly sudden explosion  of neurologic and psychiatric problems.  And he decreased my meds when possible.

62 notes

3:08am December 31, 2014

What are the weirdest nicknames bullies have given you, if any?

This thread probably needs a blanket content warning for insults, slurs, and everything in between (this isn’t the time or the place for an argument as to where to draw the line between an insult and a slur, please don’t turn it into one, but you will see both insults and slurs in this post). I’m not gonna censor myself when discussing words that had a profound impact on my life.

In addition to Mictlan, the dead could also go to other destinations:

• Warriors who died in battle and those who died as a sacrifice went east and accompanied the sun during the morning.
• Women who died in childbirth went to the west and accompanied the sun when it set in the evening.
• People who died of drowning — or from other causes that were linked to the rain god Tlaloc, such as certain diseases and lightning — went to a paradise called Tlalocan.

Jess said “She’s so slow, maybe we should call her Pokey?”

11 notes

2:41am December 23, 2014

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

28 notes

10:58pm December 16, 2014

Sometimes family members say things that surprise me.

Sometimes the surprising part is that they said it. Sometimes juts that I missed it all that time. Sometimes a bit of both and more.

Last year, someone was talking to my mom about me and my mom said, “If she had one friend, we considered that a huge success.” By which she meant someone who would come to my house more than once, invite me to theirs more than once, and not just in group settings, and not just because they were a classmate our in my horrible Brownie troop.

Then my mom went into detail about the things she did behind the scenes to orchestrate these friendships with the kids and the parents and stuff.

I had no idea. None.

An example of the other type:

For a long time I was puzzled by discrepancies between my memories and my baby book. My brothers had baby books full of years of interesting things they said. And I always heard stories about their infantile exploits. My baby book had me talking early, then it just cut off, no more notes.

To add to the puzzle, I had detailed memories of being older than that and unable to speak. I even wrote to ANI-L soon after joining asking about the discrepancies, to no avail.

Then I was on a long car trip to Humboldt County for a class project. My mom was driving. She dropped two bombshells. I’m sure to her they weren’t bombshells, just facts, but they reordered my entire self-concept and made me realize I must really be autistic, because these came from someone else, not my wishful thinking. I was 18 years old.

The two revelations:

1. In preschool, I sat and played by myself, but shrieked if any kids tried to approach me. (Except possibly one girl, who two other girls frog-marched up to me and said, “Katy, say I don’t like you.” Katy said she didn’t like me and that was the end of that. Anyone who thinks bullying starts at age right has never been shoved off a tall piece of playground equipment by ten or more preschoolers.)

2. My speech was early, but after a certain amount of words learned, I just stopped. I grunted instead. Like Mary Margaret, who had the same thing happen (speech regression is not as common as pure delay, but it’s hardly uncommon), my parents took me to a doctor, who you told them I was just lazy and if they stirred giving me what I wanted, I would use words again. They tried this and not only didn’t it work, it felt cruel, so they stopped.

I would say I then developed speech in my own way in my own time, but just only a half truth. I became driven to speak, I believe, because of the very early days when my parents took the advice of the doctors. I don’t blame my parents. They were following the advice of the same msn who helped our family in many ways, who was an authority figure and thus shipped to be listened to.

Autism wasn’t on the radar and, if done according to the criteria back then, I’d have either legit qualified for a PDD dx, or I would have run inti an uninformed enough doctor to think I was socially unresponsive to everyone around me, and dx me with infantile autism. That happened a lot: resesrch has since shown that our total unresponsiveness was all in the minds of professionals, who saw only what they expected to see (a perceptual deficit that happens to everyone but happens more to neurotypicals than auties).

But it was gratifying to know that my memories of being unable to speak, were real. Memory is malleable after all. But I have an astoundingly accurate memory for things that happened before the age of four. And usually if a memory is strong and detailed it turns out to be correct. Of course many memories from back then are unverifiable because my sensory system was so unique. I remember what Donna calls “mapping pattern form and feel”, and anyone not doing the same might have no clue what I meant. Also, like Birger Sellin, I sometimes find it easier to say what was going on inside rather than outside my head.

Anyway, she brought those things up spontaneously with no prompting from me. Which was also a relief because shorn out on the spot, people can say things they don’t mean. Before that, all I’d heard was"you screamed at the nuns in preschool,“ which seemed ordinary enough I didn’t think about it much.

Screaming whenever approached by children however, is both quite autistic, and unexpected in that I didn’t usually show enough agency socially to push peels away. Hugs felt like being smothered but instead of stiffening up, I molded myself to my mom’s body. My brother stiffened up. Both are common autistic responses but my brother always had more agency. He could approach peddle or avoid them. I was the rarest social type, passive, meaning I could rarely either initiate social conflict nor turn away from it. I grew up jealous of this mysterious power people had, to approach or avoid. To choose. I only had it for fleeting instances and had no control over it.

So I almost want to congratulate 3-4-year-old Mandy, for being able to scream sometimes.

My mother never got to see me scream when approached. The teachers called her in a to observe. I was wiggling my fingers. She wiggled hers back the same. And we had a great day, wiggling our fingers back and forth. It’s still our signal to each other.

I love when family members incorporate stimmimg into communication. There’s a whole expensive and grueling program that basically is about parents earning their children’s trust by stimmimg along with them. I can see why it works sometimes, but I don’t agree with the intensity of the program or the cult-like atmosphere, nor the sense that they only "accept” their children conditionally on becoming led autistic, such is false acceptance.

31 notes

11:07pm December 14, 2014

You can need people.

When I first encountered the autistic community online, there were two mailing lists by and for autistic people: ANI-L and InLv. I was eventually a member of both but spent most of my time on ANI-L.

Within ANI, there was a trend. You were supposed to be like Donna Williams or Jim Sinclair, possibly also like Temple Grandin. Their traits were to be emulated, traits contrary to them were to be denied, unless, say, Donna had a trait opposite from Jim Sinclair, in which case you could pick and choose which to emulate.

I want to make one thing clear. Donna, Jim, and Temple (Temple had no affiliation with ANI anyway) did not cause this. They did not encourage it. They often firefight discouraged it.

But autistic groupthink is a thing. Don’t let anyone tell you otherwise. And don’t let anyone try and tell you that noticing the groupthink makes you less autistic. Or that not being another Jim, Donna, or Temple does not make you less autistic than any of them. If you see this groupthink going on in your community, resist it in a personal level at least, and write in public about what you see. Chances are other people are feeling the same pressure but are afraid to speak up. Try not to blame whoever it’s in the place of Donna, Jim, or Temple — not unless they actively encourage everyone to be like them.

Anyway, the groupthink made it very hard to figure out who I was, when that was something I desperately needed to do. For one thing, “finding your true self” was part of the let’s all be Donna script. But for another… It went like this:

Donna was the first lesson in the world I encountered who resembled me. I was in luck because penile like me and Donna are a minority in most autistic communities. But I found a close kin in autism types in her.  I also had major things in common with Jim Sinclair.  Xe had severe sensory issues like mine, things that went well beyond hypersensitivity.  Donna had those too. We were all, in addition, people whose functioning labels confused people, even other autistic people whip were not like us in verdant certain ways. One time at a conference, someone nonautistic approached Donna and told her, “I can tell you’re actually quite severely autistic but are using dozens of strategies to compensate and look more functional than you really are.”  That statement is not how I would put it, but it’s the same thing that Jim and I also do. Donna and Jim also share with me that we are multiply disabled, that we have autistic catatonia, that we gain and lose and regain skills, etc. There are important differences between us, but those things are the same or similar.

I also have a few things in common with Temple Grandin. Not as many, but a few. Basically she remind me of myself as a child, when I was fighting my real autistic self tooth and nail because I didn’t want to be me. I’d discovered what Donna calls interpretive thought, but it was not my natural way of thinking. Instead of allowing myself to mature into it gracefully (but what preteen has ever done that?) I threw myself into it head-first heading straight for burnout.  And when forced to use interpretive thought, my brain jettisoned all of the skills I was truly good at, or at least buried them deeply. The result was, at times, someone who redder resembled Temple a bit: harsh and blunt, literal, black and white thinking, lots of aspie stereotypes. Nobody but the most perceptive could see that under the surface was a bewildered autie with massive comprehension issues who truly had no clue what was happening most of the time.  Or even what words meant. So I superficially resembled Temple at times when I was overdoing things. But never as much as I resembled Donna or Jim.

I still remember to this day a vibrating I had with an elder in øur community who along with a couple of others, were trying to mentor me and get me acclimated to being around autistic people. They kept going on about how Autreat would be my First Contact experience with other auties. I protested that my relatives were autistic, that some people in institutions with me were autistic, that some former classmates in mainstream school were undoubtedly autistic, and that half my special school was autistic. I was told these things didn’t count as First Contact experiences because institutionalized autistic people weren’t politicized or self-aware, and I begged to differ again. Being institutionalized or put in segregated education, which often skint to the same thing, can be highly politicizing experiences. We just tended to fight back with tooth and claw rather than words and formalized organizations.

But the conversation. I need to come back to that because it says every thing about how a prominent autistic person can describe something specific to their own experience, and people around them will interpret it as the only way to be truly autistic. So here is what Jim Sinclair said.  And for the record I think it’s beautiful.  Just not universal. So here’s the quote (bolding mine):

_____________________

Sometimes, though, I’m really not interested.  I’m not interested in relationships-in-general, or in people-as-groups.  I can be very interested in individuals once I’ve met them, but I don’t feel a need to have relationships in the absence of specific people to relate to.  During school breaks I can go for days or weeks without any personal contact with other human beings, and I may get bored, but I don’t get lonely.  I don’t need social contact.  And because I don’t need it, I have no compelling reason to go out of my way to get it.  Mere proximity is no reason for me to become emotionally attached to anyone who isn’t interesting to me as a person.  Even when someone does attract my interest, when I do become emotionally attached and desire a relationship with that person, I don’t become dependent on the relationship or on the person.  I don’t need them.

But wait.  Because I don’t need other people in my life, I’m free, as non-autistic people can never be free, to want other people in my life.  Because I don’t need relationships with anyone, I’m free to choose a relationship with a someone—not because I need a relationship, but because I like that person.  When I make contact with someone, it’s special—and not just because a lot of time and effort have gone into producing a response that’s a pale imitation of normal social responses.  Pale imitations of normalcy aren’t worth any of my time and effort at all.  When I make a connection it’s special because I don’t have to do it, but I choose to do it.  It’s special because I don’t generalize very well from one person to another, so everything I do is intensely focused on just that one person.  It’s special because, having no idea of what’s normal and little talent for imitation, I have created something entirely new for that person and that occasion.  It’s special because I don’t know how to take people for granted, so when I’m relating to someone, that person is the most important thing in my world for the duration of the contact.

But I don’t stick.  That confuses people sometimes.  A friend once asked me for assurance that I really wanted to be together.  I answered, “I can leave and be just fine, or I can stay and be even better.”  Isn’t it enough to be just fine on my own, and to be able to choose connections that will make my life even better?  I have exactly as many relationships as I want.  I relate only as myself, only in ways that are authentic to me.  I value people only as themselves, not for their roles or status, and not because I need someone to fill empty spaces in my life.  Are these the severe deficits in communicating and relating that I keep reading about?

[Excerpt from “Bridging the Gaps: An Inside-Out View of Autism (Or, Do You Know What I Don’t Know?)“ Jim Sinclair, 1992. From an anthology by Schopler and Mesibov entitled, High-Functioning Individuals with Autism.Plenum press, 1992.]

___________________________

Anyway, one day I was talking to the little social group that was trying to mentor me in the mysterious ways of the autistic community. And I mentioned that I needed people. Needed, was the word I used, not wanted.  Immediately, the eldest of the group jumped in and tried to reassure me. She said “It’s okay.  You’re allowed to want other people in your life, as long as you don’t really need them.”  This response scared me. One, did it mean I wasn’t autistic?. Two, why would anyone take what was clearly a statement of one person’s personal truth, and turn it into a rule that all the Truly Autistic must live by?

Later, I befriended someone who had been around ANI since the beginning or close to it. Sie told me that whenever sie saw an autistic person claim not to need other people, sie knew that this was most likely someone who had tons of support from other people, that they took for granted to such a degree that they weren’t even aware it existed. But that if they lost those social and practical supports, they would rapidly realize how much they did need other people. 

But either way. Whether you feel that you could get along fine living as a hermit for the rest of your life, our you wish you were surrounded by ladle who love you, these are both equally valid ways to be autistic. Remember it was not autistic people who came up with the idea that autistic people’s actions meant we were uninterested or unaware of social contact.  Like all such guesses, they were right about some of us and wrong about others, and you can’t tell from the outside which is which. The woman who keeps approaching everyone trying to start conversations may only be following her training that has nothing to do with her desires. The man who sits mute and rocking in the corner may be socializing with another mute person across the room through subtle signs others can’t read.  Never take for granted that what the experts observe about us is true and untainted by their own biases about social communication. And never take one person’s experiences as the way to be a Real Autistic. 

This stuff was even more confusing to me because in many ways I genuinely resemble Donna and Jim. So when I ran into something we didn’t have in common, coupled with the groupthink within ANI at the time, it made me feel as if I had to claim that trait as my own, which in turn made me feel inauthentic and unable to tell where the real similarities ended and the differences began. 

I’ve seen people do this sort of thing regarding me as well. So a blanket pronouncement tho anyone who’s gotten stuck in this: Being autistic doesn’t mean you have to be highly sensing, have severe receptive language delays, have autistic catatonia, have synesthesia, communicate with objects and see them as alive, or any other trait I happen to have. Each of us is different — even Anne and I have significant differences — and that is a good thing. 

Also remember that there are many ways to meet the diagnostic criteria for autism:  Personality type.   Language processing issues. Sensory issues. Movement issues (both internal and external). Cognitive differences. Physical illnesses. Narrow attention. And many more. You can meet the entire criteria with just one of those things, though that is rare.  Most people have a combination. And that’s why we are so diverse. And diversity among autistic purple is not a bad thing. Never let anyone, yourself included, pressure you into feeling like you have to resemble specific autistic people to be truly autistic. 

TL;DR: Autistic people are allowed to need social contact. And not just “aspies”. And you don’t need to measure yourself against well known autistic people to determine if you’re autistic or not. You can differ from them and be just as autistic as they are.

29 notes

5:00am December 14, 2014

My Father’s Hats

[I’m using Swype so expect weird typos. It keeps rendering  ”people” as “penile” or “peyote”.]

I’m in extreme luck and more than a little awe. My father’s old hats decided unanimously to allow me to photograph them. As long as they were together. And as long as the decision to be photographed on top of my head, individually, was left to the discretion of the particular hat in question. So here are my father’s hats. Some of them are very old. Older than me, maybe even older than my oldest brother (born 1966) but not sure.

They are fiercely loyal to my father, and as a Hufflepuff I can understand that and her been trying to give them space to adjust. The person who was their strongest material attachment. Who it was their job to protect from the weather, and objects made for a purpose tend to take that purpose very seriously, because whether they know it or not, the designers and builders and manufacturers and assembly line workers and quality control and everything else, all their intent and understanding of the purpose of the object, gets woven seamlessly into the object until the object absorbs all those qualities itself.

Then, the object gets sent out to an owner, and that begins a whole new relationship. At its worst, the object is not used and becomes more and more uncomfortable with its owner. Sensing the discomfort (yet reading it as coming entirely from emotions within themself(*)), the person avoids the object, and the object becomes more and more uncomfortable, and the cycle continues. At its best, the person treats the object with respect. Sie tests it how it is meant to be tested and uses it for the purposes that all those people have crafted and woven into it without necessarily knowing. It responda by working it’s hardest to do what it was meant for.  It becomes a cherished belonging, an object-friend. 

That’s what my father’s hats are like. They are extremely loyal to him because he treated them with respect and loyalty. And through him and his cultural background the hats acquired even further uses. He’d bought them to keep the sun and rain of his face, and bought especially Australian hats because they had the widest brims and were made to be very high quality. But he also used them in ways that are ingrained in my memory as incredibly important, to this day. 

Whenever there was an important meeting. At work. At his children’s schools. At the psychiatric facilities (both short and long term by the standards of the day) I was spending ever-increasing amounts of time in. He would go to the door. And with great deliberation, he would stare at his hat rack, pull down his favorite hat, and slower, carefully set it on his head in a one handed motion that became very familiar to me over the years. He would wear the hat for the whole meeting. 

I don’t think any of his bosses, or any of my teachers and therapists, or any of my brothers’ teachers and therapists for that matter since I know my brother was in an early intervention sort of program right next to, but unconnected with, the crappy school I would go to later when I was dumped into special ed. I don’t think any of them realized the significance of the hat. 

Because at the risk of sounding cheesy?. The hat was full of meaning. It meant armor protecting him. It meant staying true to his cultural roots, in meetings that were certain to be unaware of those roots at best and hostile to them at worst. It meant saying “This is who I am.”  It meant “I am taking you seriously, now please take me seriously.”  It was a reminder to himself of the seriousness of the occasion.  It was a show of respect.  It may have been a reminder of all the rough times the hats had helped him through in the mountains on a practical level, and that if he got through that he could get through this too.  It meant all kinds of things that could never be put into words but are still some of the most important things in the world. 

All those things are also why the hats are so loyal to him. They weren’t just functional for keeping out rain and sun. They acquired layers of cultural and symbolic meaning. And they responded to that by becoming fiercely loyal to him. Which is why I’m surprised that they are already okay with being photographed. And one of them (probably not coincidentally the only straw hat in that bunch of otherwise plain brown hats) was even okay being photographed on me. They must know he intended them for me.  And they do know me. I grew up with them. So it’s bit like I’m unfamiliar. It’s his absence that is unfamiliar. And objects have a habit of becoming very accustomed to routines, habits, places, and people. They need time to acclimate.

TL;DR: My late father’s hats are becoming accustomed to me faster than I expected, and didn’t mind being photographed today. I discuss lots of stuff regarding relationships with inanimate objects and how different people treat and think about them differently.  And a footnote that starts off one place and rambles in many directions.  I feel lucky to have grown up in a family where it was okay to see objects as friends.

_____________________

FOOTNOTES (or where I put one topic so it wouldn’t take over the hat talk)

(*) In societies that don’t understand our relationship with the world around us is reciprocal, especially” inanimate” objects… I still feel horrible that so many people in the world are brought up to believe that the world around them is dead. Or dead is the best word I have for it. I move through a world where everything is alive in its own way. I think I was neurologically destined to hold such views regardless of culture. Because I’m not good at looking something straight in the eye and being told “You don’t see that, it’s not there, or at least, please pretend it’s not there because that’s what the rest of us do. Failure to comply may result in prescription megadoses of neuroleptics, which may give you a few seizures a minute and will make you feel cut off from everything you hold dear, but at least it will keep you quiet about the things that the rest of us obedient souls are willing and able to shut out of our awareness on command”.   I can’t do it. I can’t shut things out of my awareness when they’re blaring like a megaphone causing visual, auditory, tactile, empathic and emotional overload.  

And that is why so many autistic people — not all, but numbers that would surprise you, unless you witnessed our occasional “drive-by conversations” on the matter. Msny autistic people who do experience these things will go so far as to denounce thorn in public. Which is why you really would be shocked at some of the people who secretly believe objects are alive and possible tho interact with. Or many other beliefs we are supposed to either outgrow, or never have in the first place. 

[If you want, you can stop reading the footnote here. It succumbs to late night writer’s ramble after awhile. But there’s interesting stuff further down.]

Read Autism and Sensing: the Unlost Instinct fire by Donna Williams for more information on some of the experiences some but by no means allautistic people have that we are not supposed to talk about our acknowledge, even though for some they form the core feature that defines us as autistic. Also be aware this extends further than autism. I had met many highly sensing people who have intellectual disabilities, specific learning difficulties, severe intractable epilepsy, cerebral paisley, brain damage, stroke, and dementia, among other things. There are also people who straddle between sensing and other modes of being, switching back and forth at will (often little with ADHD or specific learning difficulties) and Donna calls them Gadoodleborgers. All this being true, Donna wanted to name her book The System of Sensing: the Unlost Instinct. Leaving autism out out the central role in the book, because it’s not the only thing that causes people to end up in the system if sending. However, her publishers decided that autism would sell more books, so they put autism inn the title and wouldn’t take no for an answer. They did this with one or two of her other books as well. (Possibly Autism: An Inside Out Approach, or The Jumbled Jigsaw: An Insider’s Approach to the Treatment of Autistic Spectrum ‘Fruit Salads’, but I’m inclined to suspect the former, I just don’t remember where she said it so I can’t look it up). 

So be aware, if you’re not autistic, you’re sure you’re not autistic, and you’re sure she’s describing your experiences with uncanny detail, she’s just as aware as you are that these things can happen in nonautistic people.  Her publishers just aren’t always that sensitive to the effects of what they’re doing. To them it’s about marketing. It reminds me off the time I approached a man, who had helped people with autism make films about their lives or human rights. I really looked up to this guy and told him I wanted to make a documentary about the developmental disability self-advocacy movement. In a certain specific style I found engaging and stereotype-busting st once.  

Know what he told me? “You need to make it about autism only. Right now autism is the big thing. Nobody wants to see a movie about people with CP, childhood brain injury, severe epilepsy, or intellectual disabilities working for systemic change and getting it. They’d rather see autistic people. That’s where their interest lies. 

Never mind you can’t tell that without first masking the film and seeing how it does. Never mind that apathy to all DD people except autistic profile is bigotry, and pandering to bigotry only reinforces it. Unfortunately I find real time conversation extremely difficult at the best of times (i memorize scripts for everything), and giving me novel, unexpected and offensive responses kids not the best of times. I had really looked up to this guy and he’s telling me go with autism because it sells.  I’ve never seen a group of autistic people shut down an institution outside olives like the DD self-advocacy movement. I wanted to interview the People First group who did that in Tennessee, including by starting a People First chapter inside the institution, because they knew how important it is for people to be involved in their own liberation. To this day, when I tell the story, parent advocates who think themselves ultra progressive tell me “You mean a parent advocacy group did this and some DD, people helped a little.” How offensive is that? People First enlisted hello when they needed it but they made all the decisions (including ones few parent advocates would even consider feasible) and they got it shut down and the inmates moved into their surrounding communities. 

Anyway this footnote has drifted on stream of consciousness long enough, I’m gonna get back to writing about hats. 

19 notes

1:41am November 27, 2014

Social skills problems that don’t stem from autism.

I hear a lot about how autistic people have social skills delays.  And I won’t deny that I have massive problems with what most people call social skills.  Massive ones.  They aren’t generally the focus of my discussions of autism, because they’re eclipsed by even more massive problems with language, cognition, perception, and emotion, but believe me, they’re there.  And they’re there big time.

Thing is, I’m not sure the social skills problems come from autism.  In me, or in other autistic people.  Or at most, there’s a small kernel of truth somewhere in the idea that autistic people lack social skills, but the kernel is small indeed and has been overinflated by people pointing magnifying glasses and microscopes at it.

One of the problems in the autistic community is that we are a community full of people who have never had a community before, for the most part.  We have never had a place full of our social/perceptual/cognitive/emotional equals, true peers (though I normally hate that word, it fits here).  And it’s only among true peers that you can learn certain social lessons.

Most people are surrounded by true neurological peers from an early age, and have no perceptual or movement issues getting in the way of perceiving what’s going on with said peers emotionally and socially.  That means that they are learning tons of social lessons by osmosis every single day without even barely trying half the time.

Autistic people come to the autistic community without learning things that three-year-old NTs have already learned.  Some of us act like three-year-old NTs, as a result.  Not because we’re really children inside, but because we haven’t learned those lessons yet.  And we hurt each other in all kinds of ways without realizing we’re hurting each other.  And we do, many of us, learn those lessons, finally, now that we’ve been given a chance.  Others are more set in our ways and may never learn, because past a certain age we just think why bother.  But we’re all finally exposed to an environment in which we can learn.  (Even if there aren’t a lot of autistic people of our type around, autistic people are still closer to who we are than most other people are.)

And what really tears me up inside is that I see this destroying communities.  I see people doing things they wouldn’t do if they’d had a chance to learn these lessons as children.   And I see other people geting hurt.  I see people getting hurt on a personal level.  And I see people getting hurt on a community-wide level.  I see people acting as if we’re all still in grade school, or junior high, or high school, but people acting this way in the context of things that have massive consequences for our self-advocacy movements.  I see people forcing people to pick sides and hold grudges.  It’s just… really ugly.

And it doesn’t have to be this way.

I’ve noticed by the way, that people who are considered more severely autistic are more likely to have themselves and their families acknowledge this as a problem.  My suspicion is that this is because they’re more likely to have been visibly and totally cut off from social contact with just about anyone.  So when they begin making strides in cognition and communication and behavior, “catching up socially” becomes something people actually actively talk about how to do.  I remember this most vividly in Sean Barron’s book but I know I’ve heard of it in other contexts many times over, and it’s usually with people who had a very severe and obvious lack of social contact in their formative years.

TL;DR:  Many autistic people have problems with social skills that stem from lack of social experience more than they stem from lack of social experience, than from some “core deficit” of autism itself.  Autistic community presents us with an opportunity like no other, to learn these things, if we so desire.  Unfortunately, many people don’t realize this, so autistic community also presents us with a possible breeding ground for major social disaster and drama with long-reaching consequences for everyone involved, and totally unnecessary.

50 notes

1:47am November 3, 2014

I remember when I first read about Our Voice. It was in Donna Williams’s book Somebody Somewhere, I think. A passing mention that ANI had been founded and autistic people were beginning to come together through a newsletter called Our Voice.

I remember thinking of myself still as outside all this. I identified with most things Donna wrote about herself, but I still couldn’t connect it to this hazy concept of autism, especially in an environment where being PDDNOS was considered totally different from autism, and I didn’t know what PDDNOS was even supposed to mean. Autism, developmental, pervasive, these were just words, just sounds, with some exceptions.

I saw myself as fundamentally outside this autistic community thing. I saw myself as having no right to be involved with it, no connection to it, nothing. And yet I identified with something in the life of every autistic person I met or read. Often a lot. It was a very confusing time.

Before I knew it I was an ANI member.

Before I knew it I was ordering back issues of Our Voice.

Our Voice. The name. When I read it in Donna’s book, it felt like claiming ownership over having a voice at all, something autistic people weren’t supposed to have. I imagined it as supercrip kind of. Overcoming autism to have a voice. To have our voice.

I never thought I’d hold issues of Our Voice in my hand.

I never thought I’d be an ANI member.

I never thought I’d carry on long email conversations with Donna.

I never thought I’d be thought of as any kind of leader in the autistic community.

These were not things I aimed for. These were not things I expected. These were not things I believed I deserved.

And now while moving I opened a box and there were four issues of Our Voice staring me in the face.

And it brought it all back.

All of it.

I can’t believe the way people look to me sometimes. Some look to me as a leader, I never asked anyone to follow. Some look to me as a celebrity figure, which still seems ludicrous beyond belief.

Sometimes I’m still the kid who thinks sie has no right to a community of people like hirself. Sometimes I’m still the kid who thinks the autistic community is an elaborate prank set up by my bullies to make me hope there are people in the world like me. Sometimes I’m still the kid who picked up a copy of Nobody Nowhere, saw myself reflected on paper for the first time in just the poem and short introduction, and became well and truly terrified but couldn’t put the book down for the life of me. Sometimes I’m still the kid who, whenever getting to know another autistic person, seized on every minute difference between us to prove they were autistic and I wasn’t. Even when my traits were more pronounced or stereotypical - if we were different in any way, they are valid and I was not.

There are people who still want me to be that kid.

I once wrote that I felt I had no right to say I had anything other than atypical autism. I always seized on the word atypical to soothe my insecurity about not being exactly like the autistic people I deemed more valid than myself. Even after the word atypical was removed from my diagnosis. Even when I learned it had only been put there for the tactical reasons that were common for kids diagnosed in the nineties, who actually met full autism criteria.

Anyway someone found where I had written that eons ago and said they wished I was still respectful enough to only claim to have PDDNOS/atypical autism. As if, even if that were my real diagnosis, it would make me less autistic. As if… As if. The person who said this made me very angry. Even the DSM-V, which I hate with a passion, vindicated my conviction that autistic disorder, Asperger, and PDDNOS are all equally autism and equally valid. I even now, thanks to the DSM-V, have a diagnosis of autism with associated catatonic features - much more precise than autism with CNS disorder NOS.

But a diagnosis is just words. I don’t even think autism is a thing. I think autistic people are a thing. But not autism. Autism is an idea that people have when they look at us. It’s not a reality. It’s not even one thing. It’s not even five things like in the DSM-IV. It’s people. That’s all. People that doctors have ideas about.

I was once asked to write for Our Voice. I think it never actually panned out but that was just as surreal as holding it in my hand for the first time.

My whole life is surreal. It’s nothing like I ever expected. In both good and bad ways. I wish I wasn’t a leader sometimes, because I was never given a choice. I just said what I thought and people started repeating what I said and I was the last person to find out how others saw me. As always. Then I became ~controversial~ when I didn’t fit stereotypes I never asked to fit, and some assholes decided to use my life as their plaything.

But overall?

Our Voice. I can finally believe I am part of the Our. I can finally see it for what it is, not a supercrip story at all, but a demand to be recognized as having the voices we have always had. And that offhand comment in Somebody Somewhere no longer strikes me as being about people unlike me. In fact some of the people involved are now my friends.

Time is so weird. Time is what separates me from that kid. I don’t understand time. And I don’t understand my relationship to this thing called the autistic community. I don’t understand a lot of things people think I should understand, expect me to already understand. Sometimes the entire world makes me go WTF is even going on?

TL;DR: Mel finds copies of Our Voice, is astounded at the changes in hir self perception, position within the autistic community, and understanding of autism since sie first read about the existence of Our Voice.

15 notes

12:06am October 29, 2014

My mother does the best Gollum impressions I’ve ever heard.

This takes some explaining.

Growing up, I was an enormous Lord of the Rings fan. I started with The Hobbit in school, which I liked so much that when they made me repeat a year of reading class, and normally would’ve had me on a slightly different book than everyone else, i insisted on doing The Hobbit again. It took me a couple of years to find the wonders of LoTR, because the title sounded like something out of a bad Saturday morning cartoon and my expectations were quite low. Thus I was so pleasantly surprised when I did read it that I read it year after year, several times a year, and based part of my fantasy world I was trying to live in (long story, told here if you’re interested) on Lothlorien and Fangorn.

After someone told me I looked like an elf, I started insisting I was an elf. But I knew deep down in my heart that I was more like an Ent. Ents are tree herders, guardians of the forest, and they look like walking talking trees. And talk about grumpy sticks, it takes a lot to piss one off but you do not want to get on one’s bad side.

Legend has it that Ents did not start out with the power of language. The Elves loved language and loved talking to things, so in the early days they were always “waking things up” so they could talk to them. Which makes them sound like over-zealous speech therapists. Since they were not native to language, their language usage was formed by their outside-of -language thought. Each word became the entire story of the specific thing they described.

Each tree, each hill, each blade of grass had its own separate name that was, itself, a long story. If you haven’t noticed, this bears a striking resemblance to my communication style, right down to bring unable to write succinctly because language, all language, is foreign to me, so I am more long- winded than even I can stand at times. ( Not being native to language, my language comprehension sucks, and I can’t read my own long posts.) I also treat the redwoods I was born into with the same reverence an Ent would, and constantly feel my state of exile.

Anyway my parents really didn’t see why I was so obsessed with Tolkien until the movies came out. After seeing the first two extended editions, my dad went and saw the third one in the theater. I had bought them a copy of the book, with paper clips carefully arranged to avoid spoilers for the third movie. So my dad went to the theater and was thrilled. He said when Legolas killed the Oliphaunt, everyone cheered like they used to do in movies when he was a kid (he was at that point around 70 I think). They watched all the movies, read the whole book, and loved it. Loved all of it.

Our last name is Baggs. Technically it’s supposed to be Beggs, a Scottish name, but it got misspelled on a census and we’ve been Baggses ever since. My parents were thrilled with the resemblance to Baggins. They started calling themselves hobbits. Saying stuff like “we’re not overweight, we’re hobbits and we like our food”. When they retired, they moved to a remote hillside on the edge of a National Forest land and now live in two trailer-housing type buildings in the forest. On the road going up to their property, they posted a big sign that said “Baggs End”. They started calling themselves hermit hobbits. It was great, still is, to see something I loved so much, bridge such a large generation gap.

Anyway so my mom could give Andy Serkis a run for his money. For the longest time she’d freak my dad out by going at random into a Gollum voice and saying things like “those hobbitses are tricksssssy, aren’t they, my precccioussssssss?” And I’m not exaggerating her talents. She could voice-act for Gollum any day and get paid good money with the right agent. Not that she should. She’s just that good.

I hope she still does Gollum impressions for my dad while he’s going through this long dying process. Our family knows from experience that humor and love are the only way to get through hard times with your sanity intact.

Anyway, the above photo was sent to me when my parents first retired, with the filename hermit hobbits. I love that my parents have become hard core Lord of the Rings fans. I just love it. And I love my mom’s Gollum impersonations.

TL;DR: When my parents retired they saw the Lord of the Rings movies, read the book, and became huge fans. They have a sign on their hill that says Baggs End (due to a census misspelling of Beggs, Baggs is our surname) and my mom does scary, kick-ass Gollum impersonations.

16 notes

5:17pm October 24, 2014

Temple Grandin is wrong, but she’s right about more than I expected. (Image description is near the end of this post, it’s really long and I couldn’t put it up at the front.) Warning: This is a very long post, I can’t even read it myself, and the tl;dr summary at the end doesn’t completely cover it because I suck at summarizing. It’s taken me all week just to write it.  

43 notes

5:17pm October 20, 2014

While doing one of those “how much of my shit should I get rid of” things, I found the paper I’d written all my old ABAS scores down on.

What is the ABAS? It’s the Adaptive Behavior Assessment System. Basically it’s a test they give you when you’re applying for services, to see if you’re really having enough trouble functioning in everyday life to warrant the services. They also give them to developmentally disabled kids to track their daily living skills over time and things like that. In my case, it was given to me in 2005 as part of the intake process when I moved from Californa’s developmental disability service system to Vermont’s developmental disability service system.

The way the test works is that someone who knows you really well, usually a family member or staff, is given a multiple choice test to fill out. They fill out how often you do various things listed on the test. They don’t explain why you do them (or don’t do them) as often as you do, they don’t let you say “Hey, I may not be able to do this, but I can do all these other related things,”, they don’t let you say “Hey, I may be able to do this, but I can’t do all these other related things.” It’s just a test and it’s graded purely on the numbers.

So here’s how it works. There’s ten adaptive skill areas that they test you in. They vary according to age. Mine were:

* Communication
* Community use
* Functional academics [not the ability to know academics, but the ability to apply them in regular life — so knowing calculus doesn’t count, but being able to count change does]
* Home Living
* Healthy and Safety
* Leisure
* Self-Care
* Self-Direction
* Social
* Work

They didn’t test me on work because I’m unemployable, but they tested me on the rest.

To understand my scores, you have to understand something about this test. It tests specific, specific things. Like, under communication, it asks if the person says “please” and “thank you” and things like that. I’m a published writer, but that doesn’t count for a damn thing in the communication domain. The communication domain tests the basic social communication stuff that I completely suck at. Which actually is good, in this context, because it helped me get services. But I can see how the overuse of tests like this could lead to drastically underestimating, or overestimating, people’s skills in a given area.

It didn’t help that my tester came in with preconceived ideas about me to such an extent that she actually appeared to hallucinate a wheelchair under my butt as I walked into the room using a cane. But in her report she wrote that I used a wheelchair. And then she wanted to know when I used the wheelchair versus when I walked, which suggested she had noticed I wasn’t in a wheelchair. It was extremely confusing and also none of her actual business.

So anyway, on to the scoring.

So in each of those areas, you get a ‘scaled score’. This ranges from 1 to 19. 10 is average. 14 is above average, 17 is way above average, 7 is below average, and 4 is way below average.

My scores were:

Communication: 1
Community Use: 2
Functional Academics: 3
Home Living: 2
Health and Safety: 2
Leisure: 2
Self-Care: 1
Self-Direction: 1
Social: 2
Work: n/a

What that basically says is that for all of the things tested, I could either do them none of the time, or some of the time, and both of those will get you a very low score. There’s very little out there that I can do most of the time or all of the time. Even the things I’m best at. So the test was actually for once doing its job — showing that regardless of what I can do sometimes, there’s nothing I can do frequently enough to be able to keep myself alive that way.

So then you get the composite scores. First, there’s three composites of different subtest scores: Conceptual, Social, and Practical.

My scores were:

Conceptual: 53
Social: 60
Practical: 49

The range the numbers can go through is from 40 to 135. 100 is average, and the numbers follow the same general pattern as an IQ test.

The final score you get is the General Adaptive Composite. That’s your score for the whole test, and it’s numbered like the other composite scores — range from 40-135, 100 is average, otherwise comparable to the numbers on an IQ test.

General Adaptive Composite: 47, with a confidence interval of 95% that it’s somewhere between 44 and 50. That put it one tier above the lowest tier possible (40-45).

What frightens me about all this is that this was before my health crash. This was when I was fairly mobile and active, only using a wheelchair part-time, and routinely going out in my manual chair for long walks completely under my own power, was doing a lot more for myself than I can do now (even with treatment reversing the effects of some of the health crash).

On the other hand, I’ve gotten better at some of the social communication stuff, like saying hello, goodbye, please, thank you, etc. Because otherwise it seems like I’d bottom out on the test now, or damn close, and that’s kind of depressing. I don’t like assessments, precisely because they always seem to assess what I can’t do, and ignore what I can. Which on the one hand, is what I want them to do, if they’re being used to qualify me for services — I want them to see what I can’t do more than what I can. But it feels degrading somehow to have to show off my weakest areas to a professional in exchange for money or services or something like that. It feels like a ritualized begging in which I roll over and show my vulnerable underbelly to a bunch of predators who might help me out, if they feel like it.

TL;DR: In 2005 I took a test that was supposed to assess my daily living skills in a number of areas. I performed very badly on the test, even in areas where (if they had been testing them properly, which the test did not) I should have gotten higher or lower scores. For instance, I got the lowest possible communication score because the communication skills tested by the test were all little social-communication words that I happen to suck at using. So even though I’m a published writer, my communication score hit the floor of the test. On the other hand, the test resulted in me qualifying for services, so I shouldn’t complain too hard. I’ve seen people tested in very unfair ways by the same service system that gave me this test, and they were left to fend for themselves when they really couldn’t, and that got them into dangerous situations. So all in all, even though the test is ridiculous in some respects, I can’t complain too much. My overall score on the test was 47, out of a range that goes from 40 to 135, 100 being average, and the numbers corresponding roughly to the way numbers on IQ tests work. I’m a little afraid of what my score would be now, post-health-crash. Back then, most of my problems were due to cognitive issues and autistic catatonia. Now I’ve got a lot of health problems on top of it. I always feel somewhat degraded by testing, because it feels like a form of begging, where you show all your weakest points, roll over and show them your belly and stick your neck out, while they decide whether or not you’re weak enough to qualify for the services you already know you need.

10 notes

5:10am October 18, 2014

Cats (topic submitted by krawald)

[This is part of a thing I am doing where you can submit any word or short phrase into my ask box, and I will do my best to write about it.  I might write fiction, nonfiction, or poetry, but I will do my best to write something.  It might take awhile though.  Also if you’re trolling me, I will either make up something utterly ridiculous to write in response, or ignore you altogether, so don’t bother.]

23 notes

8:21pm October 7, 2014

“

When I really started to think about what it was that I meant, I realized it had an elementary definition so simple and obvious it had been hiding in plain sight. What I mean when I say “hard core” spirituality, I mean spirituality founded in love. That’s it. That’s the definition, precisely.

The absence of love is precisely what I criticize when I criticize spirituality built around mechanical practices (breathing methods, meditation on chakras, etc.) whose purpose it is to provide its practitioner with private altered states of consciousness. It’s what’s missing among the many gurus for hire, for whom the most important quality in a student is the size of his or her bank account. It’s what you don’t see in the ornate spiritual fantasies of space aliens, channeling, crystals, and magic calendar dates. You won’t find love among the urban shamans whose ideas of spirituality consist of consuming substances and writing trip reports. You absolutely will not find anything that looks like love — not even a mild awareness that one is a member of a social species towards which one has obligations — in the ideas of those who think that wishing and hoping for more stuff is spiritual.

It is no private feeling

How can I say this when many people who engage in practices I criticize speak of love and compassion? Its this: when they speak of love and compassion, they mean by that feelings of sentimentality. They confuse their private emotional states with love, when love is not a feeling or emotion or anything private at all. It is not even action driven by maudlin feelings.

Love is something more potent. It is a deep intention indistinguishable from being and inseparable from action. To discover love in oneself is to uncover something much more extraordinary than a feeling.

”

Hard Core Spirituality

When I wrote a sonnet recently, it was a conversation between me and Death.  It ends:

“And did you act from love, and only love?”

And after that, no question is as tough.

Because no question is.  But I’ve found that every time I’ve met Death, or even come close enough to glimpse Death over the horizon, I find myself evaluating myself not on how much of my “bucket list” I got done, but on how much I acted on love.  Not maudlin sentimentality, but the hard-core love that my friend speaks of in the above quote.  The kind that is an action, that is strong, that is not an emotional state at all, that is something that pervades everything yet we run away from it and hide from it and do everything we can to have nothing to do with it.  Standin’ knee deep in a river and dyin’ of thirst, indeed (which is a Lacy J. Dalton song all about this).

Or as my friend puts it:

So I guess a subtitle of this blog could be “Shit, or get off the pot”. Summon your courage (or desperation, which is often the same thing). Go wrestle with your terrors. Make the commitment to love, living and acting love in all things, understanding that none of this is ever about yourself. Embrace loss as the whetstone of love. Or stop pretending to yourself that your search for private comfort is spiritual, when it is nearly its mockery.

I worry that the wrong people will read this.  That the people who are on an earnest spiritual quest for love will read this and think my friend is telling them they’re not good enough.  I can assure you she’s not.  Everyone has moments where we doubt, everyone has a dark night of the soul where we can’t even feel Love, everyone has times when we want out of all this.  But for many of us there is no choice but to keep trudging onward knowing that what happens will not be pleasant, but that it is necessary.

Meanwhile the people who really need to hear these things will rarely read, or hear them, at all.  I hate that about stuff like this.  You post something criticizing one group of people, and another totally innocent group of people gets burned, and may even become suicidally desperate if they were sitting on that edge.  So let this sentence be my promise to you that if any of this made you feel worthless or suicidal, it wasn’t intended to criticize you, but rather to criticize what others are doing in the name of Love.  If you feel suicidal or worthless as a result of reading this, this was not intended for you.

TL;DR:  Love is central to spiritual practice, and is what my friend means when she says ‘hard core’ spirituality.  But the love she means isn’t maudlin, sentimental, or emotional.  It’s solid, it’s an action, it’s an attribute of the world, it’s a state of being.  You are either acting in and from love, or you’re not.  Like hate, it’s not directional.  Also, if reading this makes you feel worthless or suicidal, it was not intended for you.  True mystical paths have an element to them that is truly hellish, and people can become very emotionally distraught during the course of them.  If that is you, then this isn’t meant for you, it’s not meant to make you feel worse than you already do.  It’s meant for the ones whose ideas of love and compassion are really twisted up.  And unfortunately, they won’t be listening very hard.  But when you get close to death, everyone will have to face themselves, and love will not only be the top of the list, ti will be the whole list of things you should’ve done when you were alive.  Nothing is as hard as being confronted with that and realizing you have to change your life around, nothing on earth is that hard, and nothing on earth is that rewarding or important.

29 notes

1:32am October 4, 2014

Inverted assumptions about social connectedness.

Note:  This is clipped out of a much longer post that got killed somewhere along the way by tumblr.  An important, longer post, and this was the least important part.  Also note that I don’t hold anyone responsible for assumptions they made about me or my brother as kids.  We were kids. It was a long time ago.  Nobody knew anything about autism.  We weren’t even diagnosed yet.  You can’t be blamed for what you don’t know.

This is something that has caused a lot of confusion over the years with me and my brother.  I am very passive and likely to go along with things I don’t like, which allows those around me the fantasy world that says that I like things they want me to like just because I go along with them.  My brother is, for instance, very loving and affectionate, but he spent his first several years “treating people like furniture” and screaming when “given affection”, because of his sensory defensiveness.

So I was less loving as a young child than he was, but was considered more loving because I would tolerate touch and even meld my body into my parents when held.  Which is actually as strong a sign of autism as arching your back and pulling away when held, it’s been in the literature since at least the seventies.  And it does not indicate any more, or less, affection, than stiffening when held.  Both are sensory-motor responses and don’t indicate anything in either direction about degree of affection at all.

It’s not that I wasn’t affectionate at all, mind you.  I was just less affectionate than he was.  But I looked more affectionate because I was passive and did the melding-body-into-body thing and liked my stuffed animals sometimes (although not for the reasons people suspected).  I can distinctly remember a time period when I didn’t understand affection at all – and even then, I was still attached to my parents and had nightmares about my mother going away and never seeing them again.  They’ve since done studies showing autistic children are as attached to our parents overall as nonautistic children, showing the same amount of distress when parents have left the room.  We just don’t always show the distress in the same ways.

One way I showed that distress was in a lesser ability to tolerate social situations without my mother around.  In preschool, they called her in because I was playing by myself and shrieking a high-pitched cry any time another child got near me.  My mother came in and saw me wiggling my fingers.  She already had 20 years of raising an autistic child by that point, so she knew what to do:  She wiggled her fingers right back at me.  Wiggling our fingers at each other has become a lifelong signal of affection for each other.  We can do it across a room without looking directly at each other at all.  So much for stimming being “meaningless” – and it is true that when parents join in with their kids’ stimming, the autistic kids become much more receptive to the parents’ affection, because the parents have shown willingness to join us in “our world”, for lack of a better term.  Anyway, as long as my mother was there to wiggle my fingers at, I did not scream, because I felt with my mother around I was safe.   It was only when she was gone that I shrieked when approached by other kids.

Which should tell you a lot about the attachment autistic people do and don’t have for our parents.  I think it did take me a little longer than most kids (including possibly most autistic kids) to learn affection for my family, but I certainly had attachment from an early age, just like pretty much all autistic people do.  This is why the criteria of a total lack of social involvement with others was taken out of the autism criteria by 1987 (it had been in the first criteria in 1980):  No autistic children actually fit that criteria.  We only looked, to an untrained eye, like we did, because our displays of affection and attachment were atypical.

Which is why I’ve always wondered, if affection and attachment are normal in autistic children, why was it that it took me longer than average to develop affection for my family?  And I mean, not from an outside perspective of “this person looks affectionate”, but from an inside perspective of “I feel affection”.  I almost want to blame extremely severe sensory issues and cognitive delays that made my view of the world very unstable and confusing.  I even believed at one point… I want to say “when I was three” but I really mean that period between ages 2 and 5 that I always refer to as “When I was three”… that I had two families and that my brother was the only one who could take me between them.  Nobody told me this, it was because he took me around the block in a wagon and came back to our house.  I didn’t understand we went in a circle.

I think lack of understanding of things like that could have contributed to my (comparative) lack of affection early in life.  I remember so much more about things than about people, because people were blurs that didn’t sit still, and things stayed put.  I had a lot of affection for things, I think.  

I think it’s interesting though that as usual the misconceptions about autistic children can go two ways:  Those of us who are socially passive (we are an extreme minority, according to Lorna Wing) are likely to get seen as affectionate because we tolerate approach by other people, and people fill in the blanks with what they want to see.  We may in fact be very affectionate.  Or we may not be affectionate at all.  You just can’t tell from our social behavior, because it’s all triggered and learned responses, in response to other people’s initiation.  Those of us who are aloof (as my brother was at an early age, and as I was and remain sometimes situationally when I’m not passive) get seen as unaffectionate even if we are overflowing with love.  And those of us who are active-but-odd (or actively odd, as some autistic people prefer) are most likely to be seen as affectionate because they’re doing the initiating.  (I have my actively odd moments but they’re rare.)

For whatever it’s worth, I’ve always been predominantly passive, with some aloof thrown in and some occasional actively odd (especially around puberty, when I temporarily turned into Luna Lovegood) for good measure.  My brother has always been predominantly actively odd, but he started off aloof, and he’s got elements of formal/stilted.  I know a lot of people don’t like these categories.  I think they’re useful for describing different social approaches, as long as you understand that a person can be more than one of them at different times.

I’ve found that being socially passive means that people can project whatever they want, onto me.  If they want me to be social and loving and affectionate, then they will focus on the times when I have been approached by people and show responses that seem to indicate being social, loving, and affectionate.  If they want me to be socially indifferent, they focus on the times when I am not being approached and am not able (or, they believe, willing) to approach anyone else, either.  None of it has anything to do with me.  It all has to do with who people want or expect me to be.

I have found the same problem when I am socially aloof.  Aloof is where you act like you don’t understand that anyone is there, or you may even scream when someone approaches you too closely.  It’s what most people think of when they think of autism, even though by far not all autistic people have a predominantly aloof social pattern.

I’ve found that when I’m aloof, there’s the assumption that I don’t want to interact.  And that if I wanted to interact, I would interact.  The idea of a severe initiation difficulty does not cross people’s minds.  The idea of severe sensory issues making closeness to people intolerable doesn’t cross people’s minds.

But I’m not usually aloof.  Aloof requires the ability to escape interaction.  I rarely have that ability.  I can mostly neither escape nor initiate interaction, both of which require a skill I don’t usually have.  That’s why I think the social category of passive is so important:  It’s different from the others.  The others require actions on the part of the autistic person.  Passivity requires only reactions, if that.  It requires going along with the social interaction you’re being pulled into.  And I don’t think it’s any coincidence at all that it’s linked to autistic catatonia, a condition involving the same difficulties, only in motor areas not just social ones.

Please understand I don’t blame anyone for seeing what they wanted to see.  This was 30-50 years ago we’re talking about.  Autism wasn’t on the radar of the layperson.  Much less concepts like aloof, passive, actively odd, and formal/stilted social patterns.  It was assumed that autistic people had no desire for interaction, and in fact that we never interacted at all or showed the slightest sign of sociability (which is contradicted strongly by later research).  So it was normal for people — all people — to make the assumptions they made about my brother and me.  I just think it’s interesting that my brother and me were so inverted:  The way they saw him was closer to my internal reality, the way they saw me was closer to his internal reality. 

TL;DR:  My brother was a very affectionate autistic kid who was seen as “in his own world” and “treating people like furniture” and “not knowing people existed” because of his sensory defensiveness and aloof social pattern in early childhood (before he shifted into actively odd with a vengeance).  I took much longer to develop affection towards my family (although I had perfectly normal attachment, just as my brother and pretty much all autistic kids do), because of severe sensory scrambling and other things that made it hard for me to fit together who people were and that kind of thing.  But because I was socially passive and not sensory-defensive generally, people assumed I was very affectionate.  When you’re socially passive, people project onto you whatever they expect to see, or whatever they want to see, whichever comes first and loudest.  Be careful what you assume about an autistic kid – you may not be seeing their true feelings, you may just be seeing your nonautistic interpretation of what your feelings would be if you were acting like they are acting right now.

Oh and if you’re wondering?  Both my brother and I love our families dearly now, and you couldn’t compare one love to the other at all.  I’m only talking about early childhood development here, before I was capable of a sense of “me AND you” that’s necessary for certain kinds of affection.

13 notes