On community, society, and self-definition: An Autistic Perspective

Yesterday, in a private (but large) Facebook group I belong to, the mother of an autistic child “got up on her soapbox” to explain that we should never call anyone “autistic,” but rather say that they “have autism.”  Because, she said, “Autism is not his primary identifier. The same is true for all who live with autism.”

This is MANIFESTLY, COMPLETELY, TOTALLY UNTRUE.  The two largest autistic advocacy groups in the US–that is, the two largest run by autistics themselves, rather than by parents of “children with autism”–are the Autistic Self-Advocacy Network and the Autism Women’s Network.  The communities of autistics that form both groups STRONGLY prefer identity-first language, that is, “autistic” instead of “person with autism.”  Many autistics (including myself) greatly prefer identity-first language, for a variety of reasons; the ASAN website has a nice post on why, and quite a number of us (although not myself) have blogged about it.

So I got up on my soapbox, and commented to the Facebook post, explaining why I and many other autistics strongly prefer identity-first instead of person-first language.  She and another lady tried to argue me out of it, or at least claim that by doing so I was denying other people the right to be called what they preferred.  When they couldn’t get me to back down and admit I was wrong, the OP said this:  “To be honest, it makes me feel sad that you self-identify primarily as autistic.…”

It was like a punch to the gut.  Half an hour later, my hands were still trembling; an hour later, I was still occasionally fighting back tears.  Let me explain why … and why the OP thought she could speak for autistics in the first place.

(The rest of this post is not about her; I know very little about her, beyond my interactions with her in the comments on that post, and I’m not trying to claim or imply that she’s like some of the people I talk about.  This post is about the experiences in my life that made her words strike such a strong chord in me.)

There are two autism communities in the US.  One, by far the most vocal, is made up primarily of therapists, parents, and teachers.  They’re the ones who run Autism Speaks, which is probably the only autism “charity” you’ve ever heard of.  (Here’s a good rundown of why AS is pretty terrible.)  This community started back in the 40s and 50s when Kanner et al were first diagnosing all these “abnormal” children, spinning all kinds of theories about what was wrong with them and experimenting with how to make them “normal” with very little (sometimes no) ethical oversight.  Then Lovaas came along, the father of behaviorism, claiming that autistics weren’t really people, just people-shaped animals, and that only when we became more “normal” would we really be people.  The autism community was joined by parents eager to make their child “normal,” or as “normal” as possible (without ever stopping to consider whether there might be a difference between “normal” and “healthy”).

Today its leading lights are psychologists who talk about our “lack of emotions” and say we’re wrong when we insist we have them, therapists who advocate 40+ hours a week of therapy designed to force us into compliance, and parents who blog about all the worst things their child does and how terrible autism is, in order to get sympathy and money.  It rallies around Autism Speaks, which spreads lies about autism “stealing your child” (we’re not gone, were here–we’re just different) and “destroying marriages” (studies in both Canada and the US have shown that the divorce rate is no higher for parents of autistic kids than for any other married couple).  Most of the parents and therapists aren’t bad people; they’ve just … never questioned any of these basic assumptions.  And there’s only a place for someone who actually has autism in this community if they completely agree with all of it.  (Which is why AS can occasionally get an autistic person to work with them on a high level, such as John Eldar Robinson, but can’t keep them.)  This is the autism community that largely shapes public discourse about autism, controls what programs and services are available to autistics and their families, and insists on person-first language (“person with/having autism”).

Let me tell you what life is like as an autistic in a world where this community shapes the public dialogue and perception.  It’s pitying looks, because obviously, autism has destroyed my life (it hasn’t) and I must be miserable and lonely (I’m not).  It’s listening to people explain why they absolutely won’t vaccinate their kids, because in a choice between their child (and others) dying of a preventable disease or becoming autistic, they would rather their child died.  (Think about it.  They would literally rather their child died.  People can and do die of things like rubella, mumps, polio, and other vaccine-preventable diseases.  Vaccines don’t cause autism, this has been proven many times over, but they believe it does and, believing that, they would rather risk their child dying than risk them turning out like me or my dad or my baby brother.)

It’s taking care of my baby brother when he was nonverbal or barely-verbal, and hearing people talk about what a shame it was and what a tragedy it was and what a burden he was, right next to us, as if him not talking meant he couldn’t hear.   I’m lucky; our parents would never have said anything like that to either of us.  I have too many autistic friends whose parents would say the same things, and then say, “of course I love my child, I just don’t love their autism.”  Leaving them, at age three and seven and ten and fifteen, wondering what about themselves was so terrible even their own mother and father couldn’t love them.

It’s years spent terrified of people finding out, because I knew how they treated and talked about my baby brother.  Years of feeling like I was drowning, years of social anxiety building up and up, years spent without reaching for help because I was afraid of being labelled and knew how cruel and thoughtless the world can be.  (But I don’t for a second regret “coming out” with my disability.  Yes, some people have been really nasty or condescending about it … but let’s be real, most of them would have been able to tell I was different/weird anyway, and would still have treated me badly because of it.  What coming out really did was open up the possibility of honesty and real connection with people willing to learn and hear my story.)

It’s hearing people talk about how they’d never let their daughter date an autistic boy, because everyone knows autistics have no emotions and so couldn’t really love her, would just be using her for sex.  (That’s actually the good version.  Once, it was because “all autistics are sociopaths.”)

It’s being only listened to when I talk about the bad parts of autism.  Problems, sure, everyone wants to hear about my struggles (and how “inspiring” I am for overcoming them).  But dare to talk about anything positive outside a select community, and I get jumped on.  Everything bad about me must be caused by my autism; anything good about me must be completely unrelated.  And anything that is neither good nor bad, merely different, must be bad if it’s related to my autism.  Example: I struggle with executive dysfunction, and get really focused on things such that I have trouble stopping doing one thing and starting another.  If that autistic focus prevents me from doing things that are more important, it’s terrible how my autism hinders me.  If that autistic focus helps me do a lot of work in a short time, however, it’s wonderful how much I have accomplished despite my autism!  Because nothing good can ever come from autism.

I also have very sensitive hearing.  This makes some things (events in large, echoing spaces, for example) very difficult, but it also makes me very musical.  If my auditory issues give me problems at a high school basketball game, isn’t autism terrible.  But if I dare to talk about how my autistic sensory issues with hearing gives me pleasure in listening to music or has made singing and playing instruments easier, well, there’s a good chance any autism parent, therapist, or teacher in the vicinity is going to jump all over me.  Because how dare I suggest that autism has any positives.

It’s people not believing me when I tell them how my autism affects me.  You see, I’m “high functioning,” which means that in many situation I can pass for “normal.”  (Basically, it means I’m a decent actress, because that’s what passing for “normal” is–acting.)  Therefore, if ever I slip and do or say something that isn’t “normal,” it’s because I’m deliberately trying to be a jerk.  If I’m trying my absolute best to act “normal” and still slip up, well, I just need to try harder.  If there are things I can’t do because I’m close to a meltdown, it’s because I’m being “lazy.”  And if I try to explain (difficult, when you’re on the edge of a meltdown), “Well, everyone’s tired, Anna, not just you.  It’s not that hard.”  (It’s not hard for you.  But my brain works differently, and right now, it’s impossible for me.)  I’m “high-functioning,” so to a lot of people I shouldn’t need any accommodations or special understanding.

It’s society assuming that I’m always the one who needs to change if there is an incompatibility (however slight) between me and “normal.”  If there is a conflict between my deepest needs and someone else’s convenience, well.  Obviously, expecting them to accommodate me is completely unreasonable.  (But if there’s something they want to do for me, something that will make them feel good about helping the poor autistic, I must always let them do it and be grateful for it.  Even if it’s not anything I need or want, even if it’s something that actually causes me problems.  Because they’re being Nice, so it would be offensive if I don’t fall all over myself with gratitude.)

It’s parents of autistic kids being thrilled to meet me–at first.  They’re so happy, I give them hope that their kid will be “normal,” they hope their kid turns out just like me!  Except that a lot of the time, that only lasts as long as I’m the “good” autistic who agrees with everything they think, say, and do.  If I don’t, if I suggest things they don’t want to hear or offer an explanation of their child’s behavior that doesn’t fit their models, well, obviously I can’t know what I’m talking about, because I’m nothing like their child.  (Maybe–after all, autism is a fairly wide and deep spectrum, more like a color wheel than a straight line.  But if the parents are neurotypical, I bet I’m still a heck of a lot more like their child than they are.  Also: are you different as an adult than you were as a child?  Yes?  Well!  Guess what!  So am I!)

It’s listening to all the autistics I know who had (and many still have) worse childhoods and lives than mine, filled with well-meaning parents and therapists so focused on “helping” them be “normal” that they couldn’t see the trauma they were causing, the stress, the anxiety, the scars that still hobble them in many cases.  It’s hearing how so many of their parents still claim that they were doing the right thing, and their children should be grateful to them for getting that dehumanizing therapy.  (Note: not all therapy is bad, in fact there are a lot of things that therapy can help autistics with.  But unfortunately, there is SO MUCH autism therapy out there that is damaging rather than helpful, and while things are getting better, you still have to be VERY careful.  Particularly with anything labelled “behavioral,” ABA, or IBI.  My autism resource list has a whole section on this.)

It’s seeing scientific studies come out every six months or so with “revolutionary new findings about autism,” which is really only confirming something actual autistics have been trying to tell people for the last thirty years.  There’s never any acknowledgment of this.  We get belittled and pooh-poohed for trying to say it; they get glowing reviews.

It’s seeing the news every time the parent of an autistic kid murders their child because “raising a child who has autism is so hard.”  And seeing news outlets and talk shows fall all over themselves to exonerate the murderer and blame the victim for their own death. (Parents murder autistic children in the US at an average rate of about one every month.  In the past five years, over 180 people with disabilities have been murdered by parents and caregivers, with autistics making up a large percentage of the total.)  (I use person-first language here because while some disability communities, notably the Deaf community and Autistic community, prefer identity-first language, most other groups prefer person-first language, making it best when speaking of the larger whole.)

It’s steeling myself whenever I see an article or ad or blog post or book about autism, because chances are very good it’s going to be terrible and hurtful.  It’s probably spreading terrible stereotypes.  If not, good chance it includes at least some mention of all the terrible things that society, parents, therapists, and teachers can do to autistic kids.

It’s steeling myself every time there’s a mass shooting, because long before any facts are known, the media will be throwing around theories about the killer being mentally ill and/or autistic–this despite the fact that there has never been a mass shooting committed by an autistic, and very few mass shootings are committed by anyone with any mental illness or intellectual disability.  We are far more likely to be injured or murdered by “normal,” able-bodied folks than vice versa.  But it’s  easier to demonize us than to ask what it is about our society that makes otherwise mentally-stable young men decide to take their frustrations out by shooting up schools, churches, and other public places.

It’s knowing that most autistic-coded characters on TV are like Sheldon from the Big Bang theory–where it’s implied but never stated that they are on the autism spectrum, so half the time the show can occasionally toy with something resembling understanding, while half the time implying that it’s not a different neurology, he’s just a selfish jerk.  And all the time playing it for laughs.  (“Oh! You must love Sheldon Cooper, then,” people say when they find out I’m autistic.  No.  I don’t.  He makes me cringe.  Some autistics do like him, I’m not saying he’s a bad character or that there are no autistics who are selfish jerks.  I’m just saying, when my choices for seeing people like me on TV are him and the occasional Rain Man-esque autistic savant …. no thank you.)

It’s telling people that I’m autistic, and have them lecture me about what autism is like because their father’s brother’s nephew’s cousin’s former roommate’s kid is autistic and they met them for five minutes at a birthday party once, and then later read an article about autism, so obviously they know more than me.

Some of the biggest autism challenges in my life aren’t caused by autism itself, they’re caused by the way society thinks about and deals with autistics.  Especially the “autism society” that is made up of “experts” and parents, who only want what’s best for us … but who assume that only they can know what “best” is, and that obviously they know our minds and bodies better than we do ourselves.  So we’re welcome only as long as we agree with them and do what they say.  We’re welcome only as long as autism is only ever bad, and they’re heroes for “helping” us.

Which is why another autism society exists.  Autistic society.  Made up by and for people who actually are autistic.  (You can find us at ASAN, AWN, a large variety of blogs, and on most social media sites–look for #actuallyautistic and variations thereof.)  Our motto is “Nothing About Us Without Us.”  (Also, “Autism Speaks Doesn’t Speak For Me.”)

And most of that society starts with saying NO.

NO.  You do not get to tell us you know better than we do about our own brains and bodies.

NO.  You do not get to speak for us or tell us how we should think about ourselves.

NO.  You do not get to make us feel ashamed of who we are.

NO.  You do not get to pity us.

NO.  You do not get to say our lives are terrible and we’d be better off dead.

NO.  You do not get to exclude us from conversations about our own lives.

NO.  You do not get to decide what “normal” is, and that “normal” is always the ultimate goal.  (Healthy and happy are much better ones.)

NO.  You do not get to chop off the bad bits of our lives and say “this is autism.”

NO.  You do not get to declare that some of the good bits of are lives are bad just because you can’t separate them from our autism.

NO.  You do not get to decide that obviously, any good part of our lives is unrelated to our autism.

NO.  You do not get to decide that anything inconvenient to you is bad.

NO.  You do not get to demonize our condition to get sympathy and money and turn around and say you’re doing it for our own good.

NO.  You do not get to divide us up with the catch-22 of “high functioning” vs. “low functioning.”

NO.  You do not get to decide what accommodations I need, and when I need them.

NO.  You do not get to decide that my life is a tragedy because I’m autistic.

NO.  You do not get to control what language we use about ourselves or how we see ourselves.

NO.  My autism is not about you.  Your child’s autism is not about the problems it causes you and what an awesome parent you are for dealing with it.  Your patient’s autism is not about how great a therapist you are for changing their behavior and personality into something you like better.

NO.  You do not get to decide we’re unfeeling–or even sociopaths–because the body language and facial expressions and tone of voice and words we use to express our emotions are different than yours.

NO.  You do not get to make us ashamed of who we are.  And you do not get to be condescending and superior about trying.

I am autistic.  I am not ashamed, I am proud.  And I am not alone.  We are not alone.  We are the autistic community, and we speak with many voices.  Our lives are our own.  We define ourselves.  We are fearfully and wonderfully made by a creator who made us different, but not less.

For it was you who formed my inward parts;
   you knit me together in my mother’s womb.
I praise you, for I am fearfully and wonderfully made.
   Wonderful are your works;
that I know very well.–Psalm 139:13-14

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