7:34pm September 22, 2014

My own personal envies and jealousies around autism and disability.

A continuation of this post, which you might want to read before continuing.  This post is very long and very involved and may not make sense without the context of the last post.  Most especially, the stuff about “Please don’t have your usual knee-jerk responses to confessions of envy in this context.  We all know our envy is illogical and probably unfounded in reality and potentially harmful to others.  We’re just trying to bring it into the light where people can see it and maybe exorcise it a bit.  Also there’s a tl;dr at the end because this post is monstrously long.

Note: If you’re a member of my family, you probably don’t want to read this.  I’m serious.  I’m trying to be honest about my feelings of jealousy, and some of it revolves around family issues that none of us need to be stressing out about right now.  I don’t blame anyone for anything that’s happened, but things have happened, and so I have these feelings, and I’m trying to be honest about them in the interest of a conversation that’s going on about disability and jealousy/envy.  So if you read this, please don’t try to talk to me about it.  And it’d be better if you didn’t read it at all, maybe.  It’s not that bad, but I know emotions are high right now with the family emergencies and stuff, so I just wanted to put this warning here.  This post isn’t meant for family, and it could hurt feelings unnecessarily.

So in the interests of being totally honest about who I envy and why… this is going to be almost purely about autism, because it’s easier for me to focus on that than to make it broader.

I envy people whose autism was picked up earlier than mine was.  Because it feels like they get questioned less, even if that’s not true.  It feels like if I had a diagnosis at the age of three, or even seven (when they changed the DSM so that I’d get a proper diagnosis without them having to fudge one of the criteria — a criterion pretty much no autistic person actually fits, but yeah) instead of at the age of fourteen, then somehow people would believe me more when I say I was professionally diagnosed. 

Also I wish my diagnosis at fourteen had said exactly what he told my mother.  I wish he hadn’t tried to protect me by using PDDNOS/atypical autism when he knew full well — and told my mother orally — it was autistic disorder with “idiot savant” tendencies.  

(Regarding idiot savant, he was one of the few people who recognized how severe my receptive language and other problems were, and how any of my abilities were like these tiny spikes of ability against a background of extreme inability.  That’s why “idiot savant” were the first words he said to my mother about me, even before “autism”.  Understand he came from a time when “idiot savant” was just the normal word for “savant syndrome”, and they didn’t really have words for ‘islands of ability” or “splinter skills” yet.  He was trained in the sixties and it showed.  But the fact that he was trained in the sixties and could still recognize me as very much autistic, tells me that he definitely knew autism when he saw it.)

Anyway…

I envy people whose life stories fit into the general narratives that are “allowed” for autistic people.  Whether that’s the high functioning life story, the low functioning life story, the aspie life story, mine doesn’t fit into any of them and I sometimes find myself trying to force my story to fit into one or more of them even though it doesn’t.  I just stop talking about the parts that don’t fit.  The amount of envy I feel over this is poisonous, it gets down in my gut and burns me alive.  It’s so intense.

My worst disability-related envy — my brother

Worse is my envy for my brother.  If anyone connected to all this reads this — please don’t take it personally, I’m trying to write about how jealousy affects disabled people’s perception of each other and I can’t even begin to discuss my own problems with jealousy without discussing my brother.  In fact, if you’re family, you might just want to skip this post altogether.  I’m trying to be honest for the sake of understanding something really important, but I don’t want to stir up trouble within the family.  So if you’re family, stop reading here unless you’re really sure that you won’t get pissed off at me for discussing how jealous I get something that my brother was recognized as having serious problems from an early age and I wasn’t, or wasn’t as much, anyway.  I don’t want to talk to family about this, I just want other disabled people to understand that this kind of jealousy can happen within families, and why.

In our family, certain kinds of autism are almost the norm.  My father’s autism is normal.  My autism is normal.  But my brother’s autism (and, I’m convinced, a lot of related conditions that are not autism at all but have been packaged into autism because everyone assumes that’s what they were) is for some reason abnormal.  And so everyone recognized from the time he was born that he was different.  And I envy that recognition so hard it’s hard to think sometimes.  I get angry at my parents for recognizing something was “wrong with” him and for not recognizing what was “wrong with” me.  I get angry whenever I get compared to him, especially when the comparisons don’t make sense.

Like people will say that he didn’t like to be shown affection, and that I did.  The reality is that he did like to be shown affection (this is what he tells me), he just couldn’t always handle touch.  And I could tolerate touch or just about anything, because I was socially passive, the rarest social type among autistic people.  I accepted approaches no matter what.  It didn’t mean I enjoyed them.  So he and I have always been compared to each other, but often people get the reality of our experiences backwards.  He was far more affectionate than I was but far less able to show it, I was far more distant than he was but far less able to show it.  And hearing people tell me who I was, what I was, it burns me inside, especially when they make comparisons to my brother.  It makes me so angry.  And I get jealous of him for having a body that actually reacted to his surroundings in a way that showed his level of comfort or discomfort.

Anyway my brother would’ve been diagnosed as a classic Kanner autistic by the age of three, I’m sure.  He screamed at any change in his environment and in fact any sensory stimulus at all.  He didn’t like to be touched and showed it very readily.  He didn’t like “cuddly toys”.  When he met other children, he approached them as if they were aliens from another planet.  He “treated people like furniture” (I’m sure this isn’t what he was feeling but it’s how other people saw him).  He played in the toilet, including with the contents of the toilet.  He was like, classic everything aside from speech delay, and not all of Kanner’s patients had a speech delay so I think if he’d seen someone who understood autism he’d have been diagnosed instantly on the spot.

As it is today he’d be diagnosable with Asperger syndrome if Asperger syndrome still exists.  He’s an absolutely classic aspie now.  And I think he may be pursuing an adult diagnosis, last I heard.  

But I get so jealous when I hear of his early life, because what I hear is “We recognized there was something very wrong with him from the day he was born.”

Now… it isn’t like I was anywhere near normal from the day I was born, but my abnormalities, such as they were, fit in better with my family.  I didn’t cry when I was born, and my parents describe me as a quiet baby.  (They used to regale me with stories of my brothers and their exploits as babies and toddlers.  I’d ask for stories about myself and they would pause for a moment and say “You… you were the quiet one.”)  

My mother says that I lacked the usual nursing instinct, and had to be systematically taught how to nurse.  When I went to well-baby checkups, I fixated on the doctor’s stethoscope and paid no attention to the doctor or my parents.  The doctor, seeing this, said “You’ll have to watch out for this one!”  

When I first entered playgroups, I acted like other children didn’t exist and my only interaction with them was to be upset by them.  When I entered preschool, the nuns called in my parents because I played alone and shrieked when other kids got near me.  

I learned a certain amount of words, and lost those words again so that I could only grunt and sometimes point.  But despite pointing myself, I could not understand other people’s pointing (a big red flag for autism).  When I regained speech, it involved a lot of immediate and delayed echolalia both for actual speech and for sounds.  I had severe trouble understanding language, but I could repeat it verbatim in any language, something that made a later French teacher astonished that I’d never been exposed to French during a certain critical period in development when people can still accurately hear foreign sounds.  (I call that period a “neurotypical regression”.  I may have had a language regression NTs don’t have, but I lacked the biggest language regression they have as a matter of course.)

I was late to be toilet trained and was still in diapers when I was five.  If you’ve ever heard me say I was toilet trained earlier than that, I say that because I remember time in chunks and there’s an entire timespan from ages 1.5 to 5 that I describe as being “3 years old” regardless of how old I was.  I was starting toilet training around 2 or 3, certainly, but I still wore diapers until I was five.  I can remember my father changing my diapers, and the look on his face, but I can’t remember being able to feel what a wet or soiled diaper felt like, so I must have had sensory issues interfering with my connection to my body.  (I know I did because whenever I connected to my body too heavily I got a blast of neuropathic pain that made me automatically shut off.)  Even after I was out of diapers I remember having accidents or peeing in my room until I was twelve or so.

I had an unusual gait that had to be rectified by physical therapy.  My doctor had me take ballet lessons and my mother molded my legs into all the positions because I couldn’t do it myself.  This helped me learn to walk better without my foot turning in and me tripping over it.  I rocked my head in my crib, and I flapped my hands.  If you set me up with water, I could play with it forever.  Same with buttons and a muffin tin, and lots of other sensory games.  

I’m saying all that because it’s not like any of that, taken together, is not absolutely standard for my type of autistic person.  But my type of autistic person is very common in my family.  Very few of those things stood out as things to worry about.  Also, my brother’s reactions were harder to ignore because I tended towards quietness and passivity and he tended towards loudness and rigidity.  

My brother and I are opposites on almost any autistic trait.  If you rate autistic and nonautistic children from 1 to 3 on any given trait, what you find is that the nonautistic kids will usually rate 2, and the autistic kids will usually rate either 1 or 3.  In other words, just about any autistic trait’s opposite is also an autistic trait.  It’s not like a trait is or isn’t autistic, it’s that autistic people tend to polarize on both ends of a trait.  I wish I had a cite for this because it was a fascinating study, but I’ve never been able to find it again.  So basically anywhere my brother is a 1, I am a 3.  Anywhere my brother is a 3, I am a 1.  We have very little in common other than being diagnosed or diagnosable as on the spectrum.  And my brother is a classic, classic aspie.

And I envy my brother for being a classic aspie.  I envy my brother for having the classic narrative of autistic children in early childhood.  My own narrative has been in the literature since at least the seventies, but was generally considered more psychotic than Kanner autism was.  If you read Frances Tustin, you’ll find perfect descriptions of me in there… under the name childhood schizophrenia, which she differentiates from autism.  At that point in time, Kanner autism was considered high functioning in comparison, and was sometimes used as a euphemism for high functioning autism, much as Asperger is used today.  

“Childhood schizophrenics” were the ones who, like me, melted into our mothers’ bodies instead of stiffening and pulling away, who had language regression instead of language delay… it was like reading a total description of myself.  There was this checklist of differences between Kanner autism and childhood schizophrenia.  I often fit the Kanner autism, but I just as often fit the childhood schizophrenia, which was basically their way of explaining regressive autism.

And it made me understand why my seventies-throwback shrinks at one point decided that I was psychotic from infancy and that my mother had caused it.  That was straight out of Frances Tustin as well.  I’m convinced they had read her work and believed it.  To get me diagnosed with schizophrenia, which they outright told my parents I didn’t really have (reality is stranger than fiction), they went down the diagnostic criteria and for each one they asked, “How does this one fit into your life?”  They didn’t ask in any way that with my language skills I could say “it doesn’t,” so I just made shit up, which was my main form of communication at the time anyway.  

I noticed later that while they read through the criteria that listed traits, they stopped short of the criterion that says that this can’t exist in someone with a pervasive developmental disorder, except under rare circusmstances.  Then they called me psychotic since infancy (which is vanishingly rare if it exists at all) to cover the fact that I had so many developmental abnormalities from day one.

Anyway, despite all those glaring signs of autism, I simply wasn’t diagnosed.  My parents asked a doctor why I’d lost language, and the doctor immediately blamed my parents and said if they made me use words for things, I’d start talking again.  A lot of parents of regressive autistic kids get told this, and my parents are no exception.  But doing that to me not only didn’t work, it felt cruel after awhile to deny me my only means of communication in the hope that I’d speak, so they stopped doing it.  I did eventually learn to speak again, but without meaning.

I was absolutely classic hyperlexic:  Early decoding skills, severe receptive language problems, echolalia, high expressive vocabulary but inability to use speech for communication much of the time.  This is a form of hyperlexia that is heavily linked to autism and is more a learning disability than a skill.  Or rather, it’s a learning disability with some skills attached to it, much like dyslexia and autism itself.  Except autism tends to have more skills attached than hyperlexia does.  (Except the types of hyperlexia that don’t involve language problems or sensory-motor problems.  I got the kind of hyperlexia that has language problems, my brother got the kind with sensory-motor problems.)

Anyway, at least until the extent of my disabilities became apparent, my brother was always “the disabled one” in the house and I envied the fact that people recognized and accommodated his disabilities while I had to sink or swim, and I sank.  I often wonder if I’d gotten the help he did as a young child, if I’d have turned out differently.  Or whether my more severe sensory processing issues and more severe executive functioning issues and more severe motor planning issues and more severe susceptibility to all kinds of overload and shutdown and social passivity, would make my autistic catatonia and loss of skills in puberty inevitable even if I wasn’t being pushed by the schools to perform beyond my level  of capability all that time.

Because my brother and I have always had this weird thing going.  Where I actually have more trouble functioning in the world than he does, and always have.  But where he looked as a child more stereotypically autistic than I did (at least to my parents, who were used to my form of autism, I think, from other family members), so people tended to assume that he “lived in his own world and would have stayed there if someone hadn’t pulled him out” and all the other clichés that don’t actually mean anything.  A lot of the time, he would appear to be experiencing something that he wasn’t actually experiencing.  And then I would be experiencing that thing but nobody would notice because they thought I didn’t appear that way.  

So I became very, unhealthily jealous of him because I felt like people recognized his disabilities and nobody recognized mine.  And it wasn’t because mine were any milder than his, in fact most of the time mine were more severe.  He never had the speech and language problems I had, for instance.  He had the kind of hyperlexia that goes with sensory-motor problems, not the kind that goes with severe receptive language problems and echolalia.  He didn’t reverse pronouns.  He really didn’t have the language aspect of autism at all, and I had a lot of the language aspect.  For him, it was all social problems, motor clumsiness, rigidity, resistance to change, and sensory hypersensitivities.  For me, it was language (receptive language, expressive language, echolalia both immediate and delayed), motor planning problems (I was not all that clumsy and could in fact be agile under the right circumstances but I had trouble initiating and combining complex movements, early signs of autistic catatonia), social problems (but not all the same kind as his), trouble with change (but my reactions to it were very different than his, outwardly), executive functioning problems, self-care delays, extreme cognitive gaps between what most people know by a certain age and what I knew by that age, and a bunch of other things.  But for him, language really wasn’t a part of it.  If anything, he was good with language.

And it seemed to me, still does, as if my problems with functioning in the world were far more severe than his overall, but his were somehow “louder” so that everyone picked up on them and gave him a lot of extra help that I didn’t get.  He ended up moving out, learning to drive, holding a job, and living on his own with no extra support.  I ended up moving out, almost starving to death, living in complete filth, and finally more than qualifying for developmental disability services where I literally get help with every single part of my day.  I will never drive and will probably never hold enough of a job to support myself.  So he may have seemed to have more problems early on, mostly, I think, because I was quieter and less likely to show distress (I tended to shut down more than I melted down, although I melted down plenty too, so I still don’t get it), but he certainly doesn’t now.  And I sometimes get entirely jealous of the fact that everyone recognized he had problems and it took until I crashed and burned really badly in adolescence for anyone to notice that I had serious problems.  And this was not for lack of people telling my parents in no uncertain terms that I had problems, from the moment I hit preschool, onward throughout my entire school career.  I get to the point where I hate hearing about how many problems my brother had, and all the accommodations they created for him.  It just makes me angry and jealous.  I needed those accommodations and I didn’t get them.  I just came home from school every day screaming and crying.

Back to the standard life stories

There’s a life story that runs that someone was always obviously autistic from an early age, everyone knew something was wrong.  They stiffened whenever their mother tried to pick them up.  They cried whenever anything changed.  They never learned to speak.  Their IQ tested below 40.  They were really good with some things, but really bad with others.  They didn’t seem to understand what people said to them.  They went to special ed their entire school career.  And at some point they may or may not have discovered a way to communicate by typing, but are still severely disabled and need help in every aspect of life.  They either live in a group home, an ICF/MR, or with a roommate providing 24-hour support.  They probably need some amount of support while typing, and while doing anything at all.  They can’t really do anything for themselves, except a small number of things that can’t be predicted or relied upon on a regular basis.

When people find out that I need a lot of services and that I type to communicate, they assume that was my life story.  Worse, they assume that if I don’t instantly drop everything and tell them my entire life history, then I am being dishonest by telling them that I type to communicate and need a lot of help getting through the day.  Like literally if I don’t tell them my life story then I must have been hiding it from them.  This makes me infuriated.  I can’t even explain how much this pisses me off.  Because it’s like I can’t just interact like normal people interact.  I have to tell them every place I deviate from their stereotypes.  And if I don’t tell them, then I am being deceptive, supposedly.  I get emails on my other blog saying things like “Why don’t you tell anyone you were in gifted programs?”  Anyone who reads this blog knows I talk about being in gifted programs all the time.  But apparently if I don’t put in every single post that I was labeled gifted as a child, then I’m “hiding it” and “being dishonest”.  Understand how frustrating this gets, yet?

So there’s another life story that goes something like this:

There was a child who, in infancy, showed a lot of the signs of autism.  They also may have stiffened when held, had a speech delay or regression, and reacted unusually to sensory stimuli.  But then they started catching up.  By the age of four, they were speaking in full sentences.  By the age of five, they’d attained a high IQ.  They were able to be mainstreamed throughout their school career, and it’s possible that autism wasn’t even mentioned to the school, even if they were diagnosed.  They had problems, both socially and academically.  But they were able to muddle through them, more or less — possibly leaving emotional scars that the adults in their lives were unaware of, but they got through it without being put in special classes.  They may or may not have had an aide in school — some people with this life story had a one-to-one aide who came with them to classes, some didn’t.  But nothing more than that.  Likewise, they may or may not have had an IEP.  They got through school and graduated on time.  They either went to college and got the sort of job college graduates get, or they finished high school and got the sort of job you can get when you only have a high school diploma.  But they did get a job.  They struggled on the job, and they may have needed a job coach, but they did in fact get a job and keep a job.  They may have decided to live with their parents, in order to keep the support that entails.  Or they may have decided to move out on their own, and they may struggle but they can still manage to live without extra support from the state.

So that’s the other most acceptable life story.  There are a few other acceptable life stories for autistic people too, that fall somewhere in between the two extremes.  As anyone who knows me knows, my life story is not either of those stories, nor is it any other acceptable life story at all.  In fact it’s completely unacceptable to the point where I get accused of deceiving people, on a regular basis, just for not mentioning every way I differ from these two main life stories.  As if it’s my fucking duty to tell everyone I meet that I’m not a walking stereotype.  And even when I do go out of my way to mention how I differ from these things, people say I don’t go out of my way often enough.  There is no winning.  And I sometimes envy people whose life stories more or less fit one of the major ones, to the point where it burns like a fire inside me.

My life story, by the way, runs something more like this:

I was born.  When people held me, I didn’t stiffen, but I molded myself into their bodies.  Which is actually a known ‘autism thing’ as far back as the seventies, but it doesn’t get as much room in the stereotypes as stiffening when held.  I was very quiet and I didn’t know how to nurse until I was systematically taught by my mother.  I learned some words, and then suddenly lost all of them and reverted to grunting and sometimes pointing, although I could not understand when other people pointed.  My parents were blamed for this, and the techniques they were taught to improve my language didn’t work, plus they thought they were cruel so they stopped using them.   I eventually gained language back on my own, but it was echolalic.  I had a lot of receptive language problems and learned to mimic the speech of others, including learning to make my speech sound plausible.  Like I learned how to answer questions like “What’s your favorite number?” without it necessarily having anything to do with my actual favorite number.  Like my brother, I was hyperlexic.  

I was identified as gifted just before turning six, and all of my problems from then on were blamed on my being gifted.  I skipped grades, I repeated grades.  I was in some kind of counseling from the age of seven onwards, pretty much.  I started falling apart in school and otherwise, and this was seen as ‘gifted and bored’ so I was accelerated beyond belief until I was in college at 14.  I crashed and burned really badly.  When I tried to kill myself, I ended up with an autism diagnosis.  

During this time, I was starting to have periods when I moved slower or couldn’t move at all, and periods when I couldn’t talk at all.  These periods got more and more frequent over time.  Somewhere around the age of fourteen or fifteen someone wrote a graph of my functioning level that called me low functioning and predicted that I might, if everything went right, hit mid functioning sometime in the future.  They kept treating me for things and I kept trying to act like I was getting better, but I kept falling behind again.  This gave me no hope for my future.  My skills kept fluctuating up and down, up and down, but always a little more down than up in the end.  I knew I was falling behind but few other people seemed to notice.  I was told either I’d get better and become an independent adult, or I’d be institutionalized.  I knew the first wouldn’t happen so I prepared myself for the second.  

In a residential facility, they told my parents they knew I wasn’t schizophrenic, but then diagnosed me as psychotic since infancy and schizophrenic since adolescence, blaming my mother for everything.  I later read a book by Frances Tustin from the seventies that basically said everything about “childhood schizophrenia” that these people were saying about me, in great detail, so I’m pretty sure they read that book.  (In which regressive autism was characterized as a form of childhood psychosis.)  I played along with this diagnosis (and some others), for complex reasons I won’t get into here.  I’ve talked enough about it elsewhere to last a lifetime, read that link if you’re curious.  I was put into special ed.  

Then I was put into community college, which was the best of my college experiences because they had a really good disability department.  I was re-diagnosed with autism somewhere in here, and the schizophrenia diagnosis was questioned, I started being able to tell them I’d just been playing along with it because I didn’t know what else to do.  Then I crashed and burned again, right as I was trying to go to university.  

By this point I could only talk less than half of the day, and was having serious problems with basic functioning.  But I was also beginning to be able to communicate better than I ever had.  Previously less than half of my communication actually had anything to do with my real thoughts.  I was beginning to be able to communicate my real thoughts much more consistently.  But only through typing.  Trying to get speech to obey me was like trying to hit a tiny target across a long room with a rusty lever, it just wasn’t happening.  I’d get the wrong words no matter what I tried.  Some other autistic people saw me freeze in place at an autism conference and helped me get hold of the right autism studies to show my shrink, who immediately diagnosed me with autistic catatonia — it was exactly what he’d been seeing all those years.

I moved out on my own and almost starved, lived in filth, could not function at all.  (Click that link if you want all the details.)  I was still losing ground, as well, on the speech and motor front.  I now had a communication device that I used when I couldn’t speak, which was a lot of the time.  Even when I could speak, my mouth sometimes got so slurred nobody could understand me, which we now think was the onset of myasthenia gravis or something related.  I started falling, too.  Pretty soon, I had no usable speech — most of the time I couldn’t speak at all, and the rest of the time, I could only say words that had nothing to do with my thoughts.  Ever since then, having usable speech has only happened on two or three extremely rare occasions that I had no control over. 

Anyway, because I was doing so badly, I ended up on SSI, and I ended up receiving developmental disability services from the state.  In both cases I got approved on the first try without much effort involved, which I’m told is rare in both circumstances.  I have received developmental disability services ever since.  I have not been able to use speech for communication ever since.  I have had a worsening of motor planning skills ever since, although weirdly enough the onset of adrenal insufficiency seems to have made my motor planning problems stemming from autistic catatonia slightly better.   I don’t know if that means there’s some connection between autistic catatonia and cortisol, or what.  I just know that while I still have significant difficulties getting through a day without help, I also don’t freeze as much as I used to or for as long as I used to.

Anyway, that’s the story of my life in terms of autism-related stuff.  And it does not fit any stereotypical autism story I have ever heard.  It doesn’t fit the LFA story, the HFA story, or the aspie story.  It doesn’t even fit most PDDNOS stories I’ve heard.  And I get really angry and jealous sometimes that some people’s lives fit the stories so well.  They don’t have to tell someone a multi-paragraph epic every time they get to know them, or get accused of “hiding something” if they don’t.  Like, I can’t talk, that’s real, but if I don’t say that I used to be able to talk, people act like I’m hiding something.  So I get jealous of people who could always talk and people who could never talk.  Because their lives seem so simple to describe in comparison.  I know there’s tons of people like me who don’t fit the stereotypes at all and who get in trouble for it all the time.  But sometimes it makes me feel really alone, and I get jealous of people whose life stories are simpler than mine to tell.

People who fit in, in the autistic community

I also get jealous of people who can fit in with the autistic community easily.  There’s certain types of autistic people who fit in better than others.  I don’t.  I have some social prestige within the autistic community, but that’s not the same as fitting in, in a social sense.  It’s not the same as being able to follow the conversations. It’s not the same as being able to feel like going to Autreat is “coming home for the first time”.  It’s not the same as being able to sit there in a group of people and not feel alienated by the way they discuss people just like yourself.  

So many of my trips to Autreat have been exercises in jealousy.  Watching people slide effortlessly into the social fabric.  People who never slide effortlessly into any other social fabric, mind you, but people actually doing it at Autreat because they were finally meeting like-minded people.  Autistic people with similar types of autism, with similar life experiences, and so on.  And not noticing, not noticing at all, those of us sitting around on the fringes, feeling alienated and sometimes jealous.

I did fit in better at AutCom.  Partly because the way my body reacted to stress at the time was more tolerated there — loudness, sudden movements, body-slamming the walls, etc.  I knew I was around other people whose bodies reacted in the same way.  But I was also around people whose life stories roughly fit the LFA mold and mine didn’t, and I knew that was going to be a problem.  And it sometimes was.  And I became jealous of them for having life stories that everyone understood.  For being able to answer questions like “How long have you been typing?” without it bringing up five more questions and ten more answers.  Oh how very jealous I get of people who can answer questions simply without being accused of being deceptive.

But fitting in, within the autistic communities, is not an experience I’ve ever had.  I’ve fit in with a couple individuals here and there.  But I’ve never fit in the way I’ve seen some people fit in.  And it’s not that I don’t want those people to fit in.  I’m actually happy for them.  But I do get horribly jealous of them sometimes too.

People who can do things I can’t

I get jealous sometimes, although it’s less jealous than some of these other things… of people who can hold jobs, ride in cars, pass for nonautistic.  I understand — because this describes many of my friends — that this comes with its own kind of stress.  And that in some ways I’m lucky that I burned out young, because someone burning out in their fifties would struggle to get the kind of supports I have.  But I’ve always wanted to have a job.  I’ve always wanted to be more “independent”, even though I know independence is a myth.  I’ve always wanted to be able to just do things on my own, the way I want to do them, instead of having to rely on other people to help me with them.  And I do sometimes get jealous of people who can do all those things, people who can just make the choice to do something and then do it.  But the jealousy isn’t as intense as some of the other jealousies I’ve described.

People who can’t do things I can

This one sounds weird, but I know people have described being jealous of me for my inability to do certain things.  So I know it’s common.  I’ve wished sometimes that my abilities were more stable.  That is, that I was either always at my highest point, or always at my lowest point, and not constantly fluctuating between the two extremes.  And that means that while sometimes I wish I was always as able as I can possibly be, other times I wish I was always as disabled as I could possibly be.

Sometimes I wish that I couldn’t do words, because words are so painful for me.  I know how horrible it is for me to even say this.  Because there are people who would give anything to be able to type, or speak.  But sometimes I wish I didn’t have to.  Sometimes I wish I could just do what comes naturally to me, and not have to conform to the rules that say that everyone has to communicate by language.  I know what I’d be giving up if I lost language, and I’ve actually worked as hard as I can to get language.  But I sometimes wish I’d never been given what I call the gift of Seshat — a mishmash of language abilities and disabilities that sometimes feels more like a curse than a gift.  But I know that having the ability to communicate in words, however hard-won that communication has been, however hard it still continues to be, gives me a responsibility to use those words to the best effect I can.  But I sometimes, horrible as it sounds, feel envious of people who can’t use words, who can’t ever climb the cliffs that I climb daily.  The worst part is I’ve been unable to use words, for shorter periods of time, and I know how hard it can be.  And yet sometimes I wish I could never see another word again, never have to use another word again, live in a world where those things are not requirements for me.  I would never begrudge another person for wanting to be able to use words.  But I wish I didn’t have to.

And that’s just a sampling of all my misplaced envy towards other disabled people.  Understand I’m putting this out there knowing it’s misplaced.  Understand that I know every response a person could have to this, who is the target of my envy, because I have also been the target of such envy, and I know that the envy is illogical and doesn’t reflect the reality the other person is living through.  I just think that by bringing this envy into the light, maybe it will shrink and shrivel and go away or something.   Things like this don’t like to be put in the open.

TL;DR:  Even though I know that envy of other disabled people is illogical, I envy other disabled people.  I envy people who can do what I can’t do, I envy people who can’t do what I can do, and I envy people who get recognized more easily as having problems, than I got recognized as having problems.  Disabled people tend to envy in both directions — each envying the other in opposite directions.  And I think not talking about it makes our communities weaker, because there’s all this unspoken emotional baggage around things like this.

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