as small as a world and as large as alone

4:56am August 13, 2014

How did a post about bags get into a post about how autistic people are passed off as something other than autistic?  Read and find out, if you’re interested, I guess.

I got a computer bag at Goodwill too.  It only has two broken parts and they are easy to fix.  It’s the exact right size for my laptop plus assorted other supplies.  And it’s my favorite colors – brown with blue and yellow.  And $5.  So I’m ridiculously happy about finding this.

(Yes, when I was in school, people made puns on my last name all the time.  Mostly because I was so disorganized that I carried all my schoolbooks everywhere with me at all times, as well as all my papers and supplies, in at least five or six bags and backpacks that I carried everywhere with me.  <sarcasm>No, no executive functions here, not that I can see.</sarcasm>

As to that last sentence… it’s amazing what people will avoid seeing when they don’t want to see it.  I am fully expecting that everyone who teased me for being “the Baggs-lady, get it!?” had an explanation in their head for why I couldn’t organize my things, and autism wasn’t part of it.  So instead of remembering that I was autistic, or instead of remembering that I couldn’t organize my things, they are far more likely to remember whatever hare-brained explanation they pulled out of their asses.

I like to remind people of things like that because it illustrates how passing works for people who don’t actually pass for normal worth a damn.  I never passed for normal.  I know this for a fact because I was never treated like a normal person.  People who pass for normal are not singled out for merciless bullying by teachers and students alike pretty much wherever they go to school.

So instead of seeing me as “autistic” (an idea that did not exist in popular consciousness when I was growing up – if you said it, people thought you meant “artistic” with a snob accent), it went like this:

They did not see me as autistic.

They did not see my autistic behaviors.

Instead, they saw their explanations inside their heads for my autistic behaviors.

So, years down the road, when asked to recall autistic behaviors, people who “passed me off” (I refuse to call that passing on my part, I did nothing to pass, and did not pass) as something else, merely remember what they passed me off as.

Some popular things to pass me off as:

• Weird
• Eccentric
• Annoying
• Crazy
• Drug-addled
• Purposefully nonconforming
• Trying to maintain an image of myself as unusual
• Seeking attention
• The r-word
• Being a hippie
• Being afraid to acknowledge I had anything in common with anyone else
• Role-playing
• Hallucinating
• Unaware of my surroundings
• The eccentricity that supposedly comes with giftedness.  Even though very few other people in the gifted programs were even remotely like me, this was taken as meaning I must be more gifted than them, even though, really, I wasn’t.  There was just this big idea going around at the time that ‘profoundly gifted’ people were as different from 'gifted’ people as 'gifted’ people were from 'normal’ people, and I was right on the borderline of profoundly gifted at one point in my life according to IQ score.  Not that I even knew this at the time, because I was not told my IQ.  I only found out later when I found the tape of the proceedings after my IQ testing and the wailing and hand-wringing about “what can this school district possibly offer a chiiiiiiild such as this one!?” garbage.  But the gifted kids who bullied me often had even higher IQs, and fit in with other gifted kids just fine, so yeah this was not the answer at all.  If your kid is sent to a gifted program and is bullied as badly there as anywhere else, there’s something more than giftedness going on, period.  And if they’re being allowed to coast on a reputation as gifted that happened when they were five years old, even if subsequent tests don’t score them in the gifted range, something even else is going on.
• Any drugs I had taken.  For awhile, the drugs were purely imaginary, but people were convinced they were utterly real.  After the drugs became real (as a result of the people who imagined them up, mind you) then any drug I had ever taken in my life became an explanation for any oddity I had ever shown in my life, before or after I had ever taken any drugs.
• Some sort of willfully chosen eccentricity.
• Deliberate clowning around.
• Pretending to be weird/crazy/abnormal/mentally ill/si for fun.
• And much, much more.

And they will remember each and every one of the explanations they picked.  And they will remember the explanations more than they will remember the behavior that the explanation was created to explain.  And they will not, at all, unless they are exceptional in some manner, be able to go back and remember not only the behavior you were doing, but the fact that your behavior could have something in common with being autistic.

This goes double if they came up with different explanations for each autistic behavior.  Like you flapped glow-sticks in front of your face because you were on drugs, you bit yourself in the arm in order to look crazier than you actually were, you flapped your hands because you always were over-exuberant, you stared at walls because you wanted people to think you were special and artistic, and you stopped speaking sometimes because you wanted people to feel sorry for you.  This means that the person will never put those five things together as meaning the same thing at all.

I never passed for normal.  I did pass for many, many kinds of weird.  This is common among autistic people who don’t pass for normal.  When I hear anti-vax parents saying “Where were all the obviously autistic children when I was growing up?” I think “They were the ones you were bullying, they were the ones you said were crazy, they were the ones you said were on drugs, they were the ones you said were attention-seeking, they were the ones you invented twenty different explanations for twenty different behaviors and therefore never had to put the behaviors together into the coherent whole that is autism, and you still don’t.”

That’s where we were, when we weren’t locked away in institutions or in our parents’ back bedrooms.  We were hidden in plain sight.  Not by “pretending to be normal” a la Liane Holliday Willey, but by the astonishing power of the neurotypical human mind to fail to see what it doesn’t want or expect to see even when it’s standing in front of them wearing a gorilla suit and waving its arms around.

Some autistic people, mind you, did pass for normal.  But some flagrantly did not.  I have a friend who did not speak coherently in full sentences with any regularity until her twenties, and while she got a diagnosis of childhood schizophrenia by a student of Bruno Bettelheim’s, she was not diagnosed as autistic in particular.  Another girl at her school had no speech at all.  And this was just a normal Catholic school, not a special ed school.  She got by for years by starting sentences with a few words and using gestures to finish the sentences off.  When she was a teenager, she deliberately “made her voice” using tape recorders and radios to train herself to make speeches.  She thought this meant that she had improved her everyday speech to the point that she was passing for normal at that point.  But then years later she met up with a guy who had known her in high school (he had worked for the school), and he said that into her early twenties she didn’t exactly speak English, she spoke (her name), as if that was a separate language unto itself, comprised of a few words and a whole lot of gestures.  So she hadn’t improved as much as she thought.

And if someone could graduate from regular high school with that level of speech impediment without getting an autism diagnosis back then or anyone even thinking of autism, then it's obviously possible for very flagrantly autistic people to slip under the radar.  She was certainly more obviously autistic than I was in some ways, and I got diagnosed at a younger age than she did.  

This is important stuff.

People need to understand how the cognitive biases work that allow this to happen.

People need to understand that people don’t remember what they think they remember.  People remember their explanations for things that have happened, far more often than people remember what really happened.  And if they have ten different explanations for twenty different behaviors, they’re not going to put those twenty autistic behaviors together and say “Aha!  This person was autistic!”  Not unless they’re really forced to think about it.  And if they have any bias that tells them they don’t want to believe that the person was really autistic, or that they don’t want others to believe the person was really autistic?  Then they will deliberately fail to look for clues that the person was actually autistic.

All of these things are important.

They’re important when autistic people deal with bullies from our pasts, who manipulate the memories of more honest people from our pasts, who nonetheless didn’t remember us as autistic (and are therefore easy to manipulate into seeing us as not really autistic).

They’re important when autistic people deal with our own parents, who are often in denial.  This becomes important when we are seeking out a diagnosis.  

For instance, my mother used to make blanket statements like “You didn’t show any signs of social problems in preschool.”

Such blanket statements struck me as suspect.  And I was right to find them suspect.  She later told me that she was called in by the nuns to tell her that I screamed a high-pitched scream at the top of my lungs whenever another child approached me.  When she was told to come in and watch me, then we did a thing where we would repetitively wiggle our fingers back and forth at each other, which calmed me down, so she never did see the screaming firsthand.

But she had not classified “screaming when approached” as “a social problem”, so she honestly believed I had “no social problems” in preschool.  This can be a common way that parental denial functions, and it can interfere with getting a good developmental history.  Luckily, even with my mother’s rose-tinted glasses, even the very first developmental history she gave reeked of autism to the psychiatrist who diagnosed me.  But for years after that, she was slowly coming out with statements about my early development, that matched things I had remembered, but that I had always assumed were wrong because they went against what I’d been told.

Like my mother had always emphasized how I spoke somewhat early, and how this was a sign I was a gifted child.  However, there were some weird things going on.  My baby book only had a few words in it.  My brothers’ baby books were full of words and sentences and questions they asked about the world, going on for years.  The other thing was that I distinctly remembered a time I could neither speak nor understand language, and a time of echolalic language after that, and these times happened after the times I had supposedly started speaking.  Then one day, seemingly out of nowhere, my mother told me that after I learned a certain number of words, I hit some kind of plateau and stopped speaking altogether.  Instead, I would grunt, or grunt and point.  (I didn’t understand pointing, but could use pointing, for whatever reason.)  This finally fit all the facts at my disposal.

But many parents will inadvertently do things like that.  Either out of denial.  Or because their own memories are foggy.  And their own explanations for why things happened are different than why things really happened.  They may also be, as I’m sure my mother was, afraid of being blamed for their children’s autism.  That fear came true for my mother at least twice.  And I remember finding her child development book with a section on autism, where someone had underlined a line saying “There is a new theory that autism is biological, but everyone really knows it’s due to bad mothering.”  If that’s what her psychology textbook said, I am not shocked her mind would sometimes shy away from anything that could prove autism in either my brother or me.  She had always been extremely sensitive to the idea that she had done anything to hurt either of us, or cause us to be how we were.

This can also make it hard to get reliable information out of teachers and other people who used to know an autistic person.  Because teachers have the same biases that parents and other children do, and they will use those biases the same way anyone else does.

All of which is to say, it’s extremely easy to take someone who everyone nowadays would agree is absolutely flagrantly autistic-looking by anyone’s standard… and then put them in a situation even five to ten years ago – or right now, in the wrong country or many highly rural locations – where nobody would see them as even remotely autistic.  And if everyone is busy explaining away their autistic behaviors, then they will remember their explanations, rather than remembering the actual behavior, and certainly not remember autism as the explanation at all.

I know I am repeating myself a good deal, here.  But this is something where I think repetition is important.  Most people have a really hard time believing it is possible for the human memory to go so wrong, that hundreds if not thousands of autistic people went undetected for so long.  Most people have a really hard time believing that a flagrantly autistic person could reach adulthood without a diagnosis.  Both of these beliefs result in really bad things for autistic people.  So it is crucial for autistic people to understand those beliefs and biases, where they come from, and how they operate.  Because in the most extreme of cases (such as needing services), it can really mean life and death for the autistic person in question.  And even in less extreme cases (such as bullying campaigns that rely heavily on “I don’t remember this person as autistic, do YOU?”), it can really mess up a person’s life.  Not to mention that it can screw up the process of getting an adult diagnosis if a family member is in too heavy a denial for enough reality to poke through.

More on the same topic:  On growing up with strange sensory reactions, and the difference between passing and being passed off.

In other words, I have frequently been passed off, but I have never passed.  Big difference.  Important difference.

82 notes