Or something

[cosmolinguist]

This is an article about how badly prejudiced our society is against autistic people.

It's about a lot of other things, too, of course: parents' desire to protect and control their children, the manifestation of anxieties about a world too complex and specialized for most of us to feel we can grasp, the power of narrative over facts and anecdotes over data.

Those are all the things I expect that story to be about. I expected it to be sad and frustrating. I didn't expect quite so much of it to be about how awful it would be to have a child who is autistic. I didn't expect it to make me so angry, and so protective of the neurodiverse people who form so much of my circles of care that I sometimes feel like I'm the neurologically atypical one.

I keep coming back to this quote, from a mother talking about the MMR vaccine.

“It's the worst shot,” she said, with tears in her eyes. “Do you want to wake up one morning and the light is gone from her eyes with autism or something?”

...Or something?! I can't let this go unremarked-upon. What is it you think you're actually saving your child from? What the hell are you even talking about here?

That makes me so goddam angry because you will never see anyone's eyes light up like Andrew's when he sees that picture of the baby gorilla and the stethoscope or when he writes a poem using as many words that rhyme with "penis" as possible. How wrong do you have to be about autism before you think that it will steal your child from you? How can you think that's worse than the child getting a deadly or deforming disease?

Just yesterday Andrew said again that he hates Autism Speaks because they want him dead. I'm sure they're responsible for a large chunk of these people thinking that autism is a worse fate than death...with the corollary that having to parent a child with autism is even worse than that, of course.

How many kids wouldn't be getting measles, how many families wouldn't have to keep their unvaccinateable tiny babies and cute-bald-kid cancer patients shut in, how much less suffering and fear would there be, how much difference would it make in just this one respect if our society was not so afraid of and ignorant about autism?

Of course there's the point to be made that absolutely no connection has been found between vaccines and autism, and this is the way the argument is usually framed. That's fine as far as it goes, but I want to add something else to it: so fucking what if it did? Even if there was a 100% certainty that a hypothetical child of mine would get autism from a vaccine that would protect her from diseases like measles and contribute to public health, I'd still fucking do it. Autistic people are not a tragedy. They are not the worst thing that can happen to non-autistic people. Far from it: they've contributed to most of the best things that have happened to me.

Comments

[rmc28]

*growls incoherently in angry support*

[davidgillon]

Agree with everything you say, wherever it is I am on the spectrum, I wouldn't have it any other way.

Friend posted a link on FB yesterday 'Vaccine gave my cat autism' - there are not enough *Headdesks* in the world...

[cosmolinguist]

Cats seem pretty autistic to me, anyway. :)

(Whereas dogs, on the other hand...haggis was telling us the other day about a friend's partner's sheepdog, who'd clearly divided the world into sheep and humans, and considered Partner a human but her a sheep, so that when Partner wasn't around, the dog would nudge her hand away from her laptop so she couldn't use it, and follow her around the house and stuff.

(Thinking this kind of thing would be useful for getting Andrew herded to bed, I said we needed a dog like that. Warming to my own idea, I said "There must be assistance dogs for autistic people."

("That would be just: dogs," Andrew said. In his case at least (he definitely prefers dogs to people), that would probably be true. :) )

From Andrew (DW's openID still borked)

[(Anonymous)]

Cats are psychopaths, not autists. They manipulate you to get what they want, but would kill you as soon as look at you.
Dogs are autistic. They desperately want to please you but don't really understand how, they're oversensitive to smells and sounds, and to the mood of the people around them. They don't like strangers. It's almost impossible for them to be dishonest. They have overdeveloped senses of guilt and paranoia.

[withagreatlove]

People think it's a zero-sum game and it's not. People are also afraid of what they cannot understand, define, test or measure. We live in an increasingly complex world where public distrust (often rightly!) has grown in the face of increasingly undemocratic structures. Many people feel that they cannot trust the medical establishment for both right and wrong reasons but lack the data, knowledge or analytical tools to separate out the issues.

Plus, people have forgotten how severe many of these childhood diseases are. It's part of the 'natural living' fallacy. I like having things natural and pure just like the next person (I always cook from scratch and am weary of GMO's), but also remind myself that Nature is a dangerous and capricious force and that only a thin sliver of technological civilisation stands between her and our lives. There are plenty of 'natural' things that cause suffering and perhaps even evil, and plenty of 'unnatural' things that have blessed and enriched and improved our lives. I see a similar knee-jerk response in the natural birthing movement. It seems like we have forgotten what infant and maternal mortality once looked like, pre-vaccines and pre-childbirth innovation.

And yes, there's huge prejudice against Autistic people - or anyone really who might or might not fit the spectrum depending on definitions and labels. It seems like we don't do well with 'quirkiness' and difference. I'm sure that if we could open ourselves up to not only better science and an understanding thereof but also to a more diverse worldview, we'd all be better of.

Thinking of you!

[cosmolinguist]

Yes; I read something the other day about early humans' life expectancy being less than thirty years. Anything beyond that is "unnatural." Dentistry is unnatural, eyeglasses are unnatural, shoes are unnatural. It's so frustrating.

[syntaxofthings]

another incoherent grrrrrrr and also please vaccinate and save us immune-compromised from death by preventable diseases D

[cosmolinguist]

Indeed. As a good liberal, I am happy for people to do whatever they want as long as it doesn't harm anybody else, but this refusal to vaccinate so clearly and obviously violates that harm principle that it seems horrifically irresponsible for anyone to be so blithe about such an obvious public health hazard.

[syntaxofthings]

Yes. That.

[silveradept]

If only some basic research about the mortality and injury rate from the diseases we vaccinate for could change their minds, so that a proper context can be established vis-a-vis the difference between the vanishingly small possibility of an autistic child on the one side and a most probably dead or critically injured one.

[cosmolinguist]

Yes, but I also read something depressing yesterday; Not a single one of the messages was successful when it came to increasing parents' professed intent to vaccinate their children. And in several cases the messages actually backfired, either increasing the ill-founded belief that vaccines cause autism or even, in one case, apparently reducing parents' intent to vaccinate.

[silveradept]

That's scary. Entirely scary that facts don't work on stone people.

[land-girl.livejournal.com]

Hooray for this! And for all the people I know that feel the same way. I wouldn't want the Autistic people in my life to be any different.

(although on the other side of the coin, I know two people with profoundly autistic, non-verbal children, and that is no picnic - and not something I would really wish on anyone)

[cosmolinguist]

Oh indeed; I don't mean to imply there's no difficulty in interacting with and looking after autistic people. My mom worked with what was thought of as a "low-functioning" (I don't like that term; it seems to indicate nothing more than "how easy is this person for neurotypicals to deal with" rather than anything about the person themselves) autistic boy in a mainstream school; when she started he was non-verbal and not toilet trained and from her I learned a lot about the potential challenges of giving autistic people a good quality of life; I don't mean to diminish these in any way. There are huge difficulties and frustrations and anxieties, and possibly the biggest is how poor and misdirected is the support available for people on the spectrum and the carers of those who have them.

But I guess in a world that only ever seems to talk about autism as a problem and those who have it as sufferers we are to pity and can never hope to see as equals, I felt the need to emphasize the other side of the coin here. :)

[land-girl.livejournal.com]

Yes, and you are absolutely right to. I agree with you 100%.

Sometimes I wonder if the whole idea of a spectrum leads to all sorts of misunderstandings: some people hear about a very disabled non-verbal child and expect him to be like Rainmain; other people hear about very successful, competent adults and expect them to have serious difficulties.

[cosmolinguist]

Or indeed expect that a competent, successful adult must have no difficulties if they are able to seem "normal," as if there is no cost or backlash to maintaining that social acceptability.

I think people do struggle a lot with understanding variable conditions or indeed anything other than the extremes. Wasn't there some outrage the other day about a wheelchair user being able to stand? Do people still really think that wheelchairs are only for people who can't move their legs at all? I find this bizarre. But it's so ingrained in me that I'm still only slowly coming to terms with the fact that, say, I could sometimes benefit from having a white stick.

I think we do think of disability in very all-or-nothing terms, which is a shame because it makes things harder on the variably disabled, the invisibly disabled and the non-disabled alike.

[land-girl.livejournal.com]

Sometimes people amaze me with their intuition (not refuting what you write here, just adding another experience). When I am out with my mother, who is profoundly brain damaged, but looks pretty normal, she does some very odd things (rummaging through bins etc.) and I would expect people to be horrified, but more often than not they just smile and walk on. I remember her tipping out the entire contents of an egg-and-chip meal on a table to eat it, and the waiter just smiling and carrying on with his work.

[newandrewhickey.livejournal.com]

The idea of *a* spectrum is probably not the best -- there are multiple spectra of ability. For example, on most tests I come out as extremely "low-functioning" -- except on verbal skills and verbal reasoning, where I'm significantly "higher-functioning" than most neurotypicals. As verbal skills make up so much of people's perception of ability, I seem far less disabled than I probably am.

(I say "than I probably am" because I don't *feel* disabled, thanks to decades of coping techniques and the lack of a diagnosis as a child, and I still feel *very* uncomfortable and somewhat appropriative using the term about myself at all).

On the other hand there are non-verbal people who function better than me in every other way -- and increasingly technological communication aids are allowing those people to compensate for their lack of verbal skills.

I am in many ways one of those "very successful, competent adults" you talk about -- in many of the ways society cares about I'm far more competent than Holly (I've been able to stay in full-time employment for ten years now, without any periods of unemployment, and have reached the point where my annual earnings are twice as much as she's ever earned), although anyone who actually knows us would laugh hysterically at the idea that I am the competent one.

But that comes at a largely invisible cost -- the depression and anxiety which are comorbid symptoms of my autism are increased by work (and by the stress it puts on my brain to deal with the complex social environment of an office) to the point that having a job is likely to significantly shorten my lifespan from stress-related illnesses. I do have the ability to put on a performance as a neurotypical (though far from a perfect performance), but doing so for any length of time is about the most harmful thing to my mental and physical health there could be.

What is needed for *all* autistic people is help for the things *they* see as problems, and those will vary from person to person. (And what is needed for carers of autistic people is the same, except when that clashes with the needs of the person they're caring for).

[land-girl.livejournal.com]

Thank you for writing this; it is fascinating, and I appreciate you taking the time to reply and your openness. I relate to a lot of what you say, but it is always interesting to hear about somebody's experiences directly from them, rather than trying to imagine what their needs are!

[bunnypip.livejournal.com]

THIS THIS THIS THIS THIS THIS THIS!