I’m Autistic, And Believe Me, It’s A Lot Better Than Measles
February 9, 2015 10:21 PM   Subscribe

 
But Autism Speaks isn’t really a charity for autistic people. It’s a charity for neurotypical people who have been afflicted with the horror of having autistic people in their lives.
Fantastic. This could be generalized to so many charities run by horrified parents rather than actual patients.
posted by benzenedream at 11:14 PM on February 9, 2015 [43 favorites]


That is a voice that needs to be heard more widely.
posted by lollusc at 11:47 PM on February 9, 2015 [6 favorites]


Interesting article. I learned a few things from it; in particular I had never known that Autism Speaks is seen in such a negative light by so many autistic people and their families. I work with children every day and see a fair number that carry a diagnosis of autism or a related disorder and have to say that it can be far more debilitating than the author lets on. In some cases this is because the child is not getting appropriate support (often more because of the medical system in this country rather than the parent), in other cases because autism often is used as a catch all diagnosis; "something's wrong with this kid, but we don't know exactly what, so we'll just call it autism." On the other hand, autism certainly doesn't have to be as grim as the lady from Autism Speaks describes. This article from the Atlantic about the first patient ever diagnosed with autism (who is now in his seventies) is worth a read for anyone interested in the subject.
posted by TedW at 2:48 AM on February 10, 2015 [7 favorites]


far more debilitating than the author lets on.
still better than measles
posted by LogicalDash at 2:58 AM on February 10, 2015 [13 favorites]


See also what the excellent Shannon Rosa just posted about this. And yes, autistic people do hate Autism Speaks (PDF link).
posted by w0mbat at 3:43 AM on February 10, 2015 [4 favorites]


I don't think this is the right way to argue for vaccination.
posted by Segundus at 4:18 AM on February 10, 2015 [23 favorites]


When my godson was diagnosed with something that had a decades-popular non-profit campaign aligned with it, I was surprised to find that that family & diagnosed child preferences for better support were elsewhere. 5 years later the outdated approach (these poor children) is being outpaced by a much more inclusive model that connects with research and participation. Stella Young would be proud, just as she would of the blogger above.
posted by childofTethys at 4:40 AM on February 10, 2015 [1 favorite]


Gotta protect the kids from not being able to feel empathy 

To be fair to the non-vaccinating parents, who I think are very irresponsible, autism is often about a hell of a lot more than not being able to feel empathy. Many of my friends who are parents of children living with autism are dealing with a host of issues that occupy their lives every day.
posted by roomthreeseventeen at 4:45 AM on February 10, 2015 [7 favorites]


I don't think this is the right way to argue for vaccination.

Pray tell, what is?

Nothing else is working. An actual autistic person, showing their own humanity, might remove some of the bogeyman from parents who are legitimately trying to protect their kids but apparently too vulnerable to fear tactics to use their own reasoning skills.

I mean, my preference is we get the MCU folks together and actually film this, (as seen in the last thread) but until that happens we'll take what we can get.
posted by stevis23 at 5:15 AM on February 10, 2015 [10 favorites]


An actual autistic person, showing their own humanity, might remove some of the bogeyman from parents who are legitimately trying to protect their kids but apparently too vulnerable to fear tactics to use their own reasoning skills.

Yeah, but despite what the author says here, when people talk about fear of autism, it's NOT people like this.
posted by roomthreeseventeen at 5:43 AM on February 10, 2015 [7 favorites]


And when they talk about the effects of measles they don't think about dead kids, either. This is also a problem.
posted by rtha at 5:47 AM on February 10, 2015 [13 favorites]


I don't think the author cares that much about whether it's an effective way to get people to vaccinate as much as they want to change the conversation around vaccination to be less hurtful to autistic people.
posted by Potomac Avenue at 5:58 AM on February 10, 2015 [44 favorites]


I liked the subcurrent-- "You think we can't do irony? Watch me!"-- through the essay. Great argument, great writing, great prose, great snarkiness!
posted by notsnot at 6:02 AM on February 10, 2015 [5 favorites]


Yeah, but despite what the author says here, when people talk about fear of autism, it's NOT people like this.

Sure it's not. Except that people like this are definitely included in the autism diagnosis numbers that fuel that fear of autism. I think it's worth pointing out that the numbers that organizations like Autism Speaks use to encourage that fear include a lot of people who are just like the author.
posted by sciatrix at 6:15 AM on February 10, 2015 [7 favorites]


roomthreeseventeen: Yeah, but despite what the author says here, when people talk about fear of autism, it's NOT people like this.

Spot on. High functioning autism isn't the concern; it's the low functioning uncommunicative, screaming, hitting, self-injurious, forever dependent kind of autism that most people are thinking of when they hear "autistic".
posted by dr_dank at 6:19 AM on February 10, 2015 [4 favorites]


I really enjoyed this piece, not only because it so bluntly and matter-of-factly put the "vaccines are linked to autism" myth to bed, but also because as the father of a 10-year-old son on the autism spectrum, who dare I say I actually get some joy and pleasure out of parenting, I appreciated her argument that having someone on the autism spectrum in your life is not necessarily a never-ending hopeless tragedy.
posted by The Gooch at 6:36 AM on February 10, 2015 [8 favorites]


roomthreeseventeen: Yeah, but despite what the author says here, when people talk about fear of autism, it's NOT people like this.

dr_dank: Spot on. High functioning autism isn't the concern; it's the low functioning uncommunicative, screaming, hitting, self-injurious, forever dependent kind of autism that most people are thinking of when they hear "autistic".


So here's a thing that happens all the time: people perceived as "high-functioning" get smacked down like this because we're "not autistic enough" to count in this conversation, and people perceived as "low-functioning" get left out of the conversation because obviously if you can communicate [on the internet/at all] you're not low-functioning, right? (Newsflash: I guarantee you plenty of people who fit into your "low-functioning" description above can and do use the internet. On some days, I am that person.) It's a false dichotomy, it's exhausting, and it's dehumanizing. Please don't do this.
posted by dorque at 6:39 AM on February 10, 2015 [61 favorites]


Please don't do this.

That wasn't what I was insinuating. I have a teenage acquaintance who has autism, is a college student, and is perceived to be extremely high functioning. He also has an incredibly serious array of issues that he and his family deal with on a regular basis that I would not wish on anyone.
posted by roomthreeseventeen at 6:48 AM on February 10, 2015 [1 favorite]


I don't think this is the right way to argue for vaccination.
posted by Segundus at 7:18 AM on February 10


Agreed. I've got a brother who's severely autistic. For him, the disorder is legitimately no-shit disabling, regardless of quality therapies and quality support from medical professionals, family, and friends. That's not to say that those efforts didn't help him; it's that, for lack of a better term, his form of autism has a ceiling to how far he can go, and that ceiling is pretty damn low. The disadvantages he lives with are extremely significant. It's all very fine and well for people living on the high-functioning end of the spectrum to wax rhapsodic about the joys and benefits of autism, but the other end of the spectrum exists, too, and trust me when I tell you that it ain't no picnic for those people living on that side. The experiences of people with low-functioning autism are equally valid, and I suspect they're part of what has driven the fear:

…[Our autistic son Ben] would often refuse to go to sleep. Or he’d sleep and then be up for the day at 3:00 AM. …In 13 years, Karen [Ben’s mom] hadn’t had one night of unbroken sleep…

It was this crushing exhaustion that finally did it…That one night with the banging and the hitting and the screaming and the sobbing. And the more sobbing and the scratching and the banging and the pounding through doors. It was a long, nasty tantrum late one night, where Ben lunged at me over and over with all his weight and I ended up bloodied and bruised, holding his bedroom door closed while he smashed himself against it for hours, trying to get out...


--From Dave Royoko's interview here, at the This American Life web site. The interview begins at 38:09.

See also Planet Autism by Scot Sea, When the Bough Breaks: A Father’s Story by by Robert Naseef, Ph.D. (appearing in Volume 6, Number 1, 2002, Journal of Religion, Disability & Health; the essay appears to no longer be online for free), and of course Paying For My Special-Needs Child (previously, on Metafilter)

If the folks on the high-end of the spectrum could guarantee that at worst, a person's autistic child would be them, we might not even be in this anti-vaxx mess. But since they can't make that guarantee, I don't think those folks who hope their child doesn't have autism are prejudiced, awful people for saying, "I don't want autism to happen to my kid." They're awful people for not vaccinating, but not for wanting to avoid autism.

So here's a thing that happens all the time: people perceived as "high-functioning" get smacked down like this because we're "not autistic enough" to count in this conversation
posted by dorque at 9:39 AM on February 10


From what I can tell, people perceived as "high-functioning" get called out because they have a tendency to frame discussions about autism around their experiences only, and erase the experiences of people on the low-end of the spectrum. Then when people like me who have no choice but to speak for our autistic relatives do so, we get "smacked down" because we're not autistic and therefore must not know what we're talking about.

It's a real dichotomy, it's exhausting for us, and it's dehumanizing for the people we love. Please don't do this.
posted by magstheaxe at 6:57 AM on February 10, 2015 [32 favorites]


There's nothing wrong with talking about autism, but it's incorrect to have that discussion in the context of measles vaccinations, because there is no connection between measles vaccinations and autism.

There's no tradeoff. None. The studies that suggested that there was have been retracted, and were bad science.

So it's not about balancing the risk of measles versus a risk of autism. That is not how things work. Except in certain people's heads, because they are wrong, and in some cases hate admitting that they are wrong to such an extent that they are willing to let people die rather than admit that they backed the wrong horse in this particular race. That is a problem, and it is not solved by making further comparisons between autism and measles.

You don't get to choose between autism and measles. You get to choose between measles and no measles. Either way, you may or may not also end up with autism; we don't really know what causes it right now. But talking about autism/measles as though there's some sort of potential tradeoff there just serves to bring the argument back to where the anti-vax morons want it to be, because it doesn't require them to get over the cognitive hump of being fucking factually incorrect.
posted by Kadin2048 at 7:08 AM on February 10, 2015 [38 favorites]


It's all very fine and well for people living on the high-functioning end of the spectrum to wax rhapsodic about the joys and benefits of autism, but the other end of the spectrum exists, too, and trust me when I tell you that it ain't no picnic for those people living on that side. The experiences of people with low-functioning autism are equally valid, and I suspect they're part of what has driven the fear

The links you provide don't so much talk about the experiences of people with "low-functioning" autism - they talk about the experiences of parents and care-givers and ignore the actual human beings whose personal information they're publishing for the whole internet to see. (See also the "Scooter" FPP below.) The lives of autistic people who require 1:1 support, who are nonverbal, who have intellectual disabilities, who self-injure, are for sure no picnic. But they're made worse by the constant fear-mongering and demonization.
posted by Daily Alice at 7:09 AM on February 10, 2015 [6 favorites]


From what I can tell, people perceived as "high-functioning" get called out because they have a tendency to frame discussions about autism around their experiences only, and erase the experiences of people on the low-end of the spectrum. Then when people like me who have no choice but to speak for our autistic relatives do so, we get "smacked down" because we're not autistic and therefore must not know what we're talking about.

It's a real dichotomy, it's exhausting for us, and it's dehumanizing for the people we love. Please don't do this.


I think I take your point, although I still disagree strenuously (for more on why, here's
Lydia Brown's 15 things you should never say to an Autistic person, particularly 3, 4, 5, 8, and 10). And although I recognize that you're employing a rhetorical device, turning my own words against me like you did in your last sentence was spectacularly hurtful. I can't actually stop you, but I wish you wouldn't do that.
posted by dorque at 7:13 AM on February 10, 2015 [14 favorites]


So it's not about balancing the risk of measles versus a risk of autism. That is not how things work.

But the OP is particularly misguided in downplaying the effects of autism. It's irrelevant to the conversation.
posted by roomthreeseventeen at 7:14 AM on February 10, 2015


If the folks on the high-end of the spectrum could guarantee that at worst, a person's autistic child would be them, we might not even be in this anti-vaxx mess.

My son is diagnosed with autism, and although I don't think its actually the appropriate diagnosis, its what we have. We hear "high functioning" (god, how I hate that term) all the time.

He's now 8 1/2. He gets plenty of services. He's fully verbal, doesn't stim, and is super smart. But he's also impulsive, and can get fixated on things. He's very strong willed and has a fine tuned sense of what is "right" and "wrong" (not always a value judgement - a fork can be wrong) and if something is wrong, its not going to happen no matter how much you beg, plead, or threaten. He doesn't make eye contact. He has a lot of trouble seeing past himself and his own needs - not a "lack of empathy" but more of an inflexibility that's hard to combat.

When he was younger, other kids would sort of shrug off his differences, but now, not so much. He's keenly aware that he's somehow different, but he doesn't know how and he can't fix it or make it better. So, he's constantly lonely and miserable, and bullied. He's currently refusing to do classroom Valentines basically because "nobody likes me, so why should I make the effort".

He doesn't have a single friend at school. He's never invited for playdates, and it has been a couple of years since he was invited to a birthday party. He's alone on the playground, alone at lunch. He's the friendliest kid you'll ever meet, but he's unable to make and keep a friend. I was also an unpopular kid, but I always had at least a couple of friends I could hang out with at school. He's got nobody. Just a deep longing to connect and no way to actually make it happen.

I'm glad that the author doesn't feel like autism is a burden, and I do have a lot of issues with Autism Speaks, but I wish she's spend a little less time saying how great her life as a (verbal, educated, presumably toilet trained) closer-to-neurotypical-than-not autistic person is and take a look at the very real burden (yep, burden) that exists for families even less fortunate than hours - families with a child with profound autism, where the child is destructive, violent, and nonverbal.

My son is also vaccinated, but let me tell you honestly - if someone came to us today and said we could choose between him getting the measles and being autistic (or whatever he is) for the rest of his life, I'd choose the measles in a heartbeat, and I'm pretty sure he would too. "But," you say, "the measles could kill him." And so they could. But his current state of being - where he's self aware enough to know he's very different but not self aware enough to fix it - puts him at a very high risk of attempting suicide before he's 18, or becoming an addict, or all kinds of other life-threatening stuff.

I don't support the anti-vaxers, but I get it. I understand the impulse. I understand the wish that you can somehow do the thing, whatever it is, that will give you control over fate, even if it leads to short term pain.
posted by anastasiav at 7:51 AM on February 10, 2015 [28 favorites]


I'm on the very high-functioning ("Asperger's") end of the spectrum and I was uncomfortable with this article.

If all I needed to do to eradicate my overactive social anxiety and fairly poor social skills was a bout of measles, I... might actually take that offer. Doubly so if I could go back in time to when I was ~10 years old. I "grew out" of some of the worst of it, and an SSRI seems to help the anxiety. On balance I've been enormously lucky and privileged to be where I am right now.

But I'd still consider the magical measles deal.
posted by BungaDunga at 8:07 AM on February 10, 2015 [5 favorites]


That wasn't what I was insinuating.

Maybe it wasn't what you meant.
posted by LogicalDash at 8:11 AM on February 10, 2015 [2 favorites]


Maybe it wasn't what you meant.

It wasn't what I meant or what I was insinuating. Let's act in good faith here.
posted by roomthreeseventeen at 8:14 AM on February 10, 2015 [1 favorite]


What I was getting at is, if you didn't mean what you were taken to mean, maybe you should factor that into your rhetoric into the future. This too is good faith.
posted by LogicalDash at 8:42 AM on February 10, 2015 [2 favorites]


I feel like most of you are (deliberately, some of you) misunderstanding this article. Here is one thing you probably should have taken away from it: if you have anecdotes about knowing someone who is autistic (for whatever values of "autistic" or "knowing someone"), you probably shouldn't use that to erase their personhood. You probably should have more empathy, but typically neurotypical people in this situation seem to have less. You probably shouldn't use your personal experience--which is real, and yours, and valid to a degree--to generalize about autism broadly, which is very much an umbrella anyway. You probably shouldn't be insulting and petulant. The validity of your experience starts to diminish when you hop over that line.

Probably. Because your experience is in knowing one autistic person, and the state of services and social integration and basic human compassion is so bad that it's genuinely difficult to draw lines around "issues that are debilitating, full stop" and "issues that could be eased with better services/care/places in society/compassion/education and understanding." Autistic people get dehumanized a lot, and when you make these sorts of, "I know an autistic person and it's just the worst thing ever" generalizations, you're contributing to that.

Gotta protect the kids from not being able to feel empathy 

I feel like this line from the article quoted above was misunderstood, specifically, and just to clarify, it is sarcasm. Autistic people actually do feel empathy. Probably more than neurotypical people in many cases. As is demonstrable with all the demonizing and panicking and drawing false dichotomies between "real" autisms and "you're-just-quirky" autisms. These are actual, full human beings. There aren't beautiful, perfect non-autistic persons hiding underneath a layer of ugly ole' autism, but autistic people should be perceived as validly human by default. The article is arguing against the perception--widespread among anti-vaxxers--that autism is just the worst thing ever, and that willingly allowing your child to contract a literally fatal disease is preferable to raising a child that just happened to be born autistic.

Please stop agreeing with that noxious pile, you guys.
posted by byanyothername at 9:16 AM on February 10, 2015 [19 favorites]


High functioning autism isn't the concern; it's the low functioning uncommunicative, screaming, hitting, self-injurious, forever dependent kind of autism that most people are thinking of when they hear "autistic"

"High-functioning autistics", surprisingly, are still autistic, and very often the difference is more one of degree. Given certain stimuli and environmental stressors, a "high-functioning" autistic can experience a meltdown from sensory overload and just sit in one spot humming and rocking.

Autistic adults and "high-functioning" autistics are too frequently invisible in discussions about autism, because most concern seems to focus on children and on those more severely affected. Telling "high-functioning" autistics that their perspectives and lived experiences are irrelevant to the discussion is kind of like telling Barack Obama or Lewis Hamilton that they don't have anything to say about "the black experience" because they're half white.

And yes, autistic people generally are not too keen on Autism Speaks (if you do a Google search for "Autism Speaks", autocomplete suggests "controversy", "criticism", and "is a hate group").
posted by Pseudonymous Cognomen at 10:06 AM on February 10, 2015 [10 favorites]


The links you provide don't so much talk about the experiences of people with "low-functioning" autism - they talk about the experiences of parents and care-givers and ignore the actual human beings whose personal information they're publishing for the whole internet to see.
posted by Daily Alice at 10:09 AM on February 10


Daily Alice, if you know of a way to help persons with low-functioning autism share their own experiences themselves, I'd love to hear about it. And that's not sarcasm. I will try absolutely anything that doesn't harm him to help my brother communicate.

I know that there are many non-verbal folks out there who have been able to utilize various tools to communicate, and are consequently bloggers, authors, advocates and the like. I think it's fantastic that they've been able to do so, and be a voice to represent for that side of the community. We're all the richer for it, no question.

But there are still plenty of people whose autism seems to render them immune to being able to communicate with the rest of us. Computers, iPads, vocal devices, films, alphabet grids, sign language, Scrabble tiles, semaphores, you name it--nothing works. Or worse yet, after all the effort you start to see evidence that you may be dealing with an actual intellectual disability, instead of with someone who's simply being stymied by their autism.

It's still important that those folks be part of conversations concerning autism. But until they can communicate for themselves, their loved ones and caregivers are going to have to. Best I can tell, there's no other choice.

One of the consequences of that is that some inconvenient truths about the experiences of both the person with disabling autism and the caregiver are going to be part of those discussions. I get the impression that some folks with autism would rather those truths didn't receive much airplay because they feel the "Autism is Hell on Earth" narrative is far too prominent amongst the general public. And IMO, they have an extremely good point.

But at the same time, if the goal is to increase acceptance and improve the lives of all people with autism, you don't help the folks who require 24/7 care by silencing their caregivers. Many of those folks simply don't have another voice.
posted by magstheaxe at 10:09 AM on February 10, 2015 [12 favorites]


I was first linked to this article by an autistic friend.

I think the point of the article, broadly speaking, is, "please don't use autism as your worst case scenario. It's a shitty thing to do and contributes to anti-autism prejudice."

And she's super fucking right.

And we'd all see it in another context.

I see the comment above that speculates that it's better to risk death for your child than to have an autistic kid who feels isolated, who feels different, who is at risk for suicide or addiction. And guys - people say that shit about gay people.

And when they say that shit about gay people, I think we'd all recognize that the solution is not to talk more about how awful being gay is. I think we'd all recognize that that contributes to the problem.

And no, of course they're not exactly parallel, but where they are parallel is that more prejudice is never ever ever going to improve the situation as compared to less.

I do want to respect the experiences of caregivers, but if I'm weighing "caregivers talking about what it's like for autistic people," versus, "autistic people talking about what it's like for autistic people," I know which one I give more weight.
posted by Myca at 11:16 AM on February 10, 2015 [17 favorites]


I think I take your point, although I still disagree strenuously (for more on why, here's Lydia Brown's 15 things you should never say to an Autistic person, particularly 3, 4, 5, 8, and 10).

I'm familiar with Ms. Brown's essay, thank you. I found #10 particularly interesting, given her insinuation that anyone with even a modicum of autism would understand a severely autistic person better than someone who lives with and cares for them 24/7. To me, that's like saying someone who lost some hearing in one ear as they got older understands all of the issues faced by someone profoundly deaf from birth, and that the hearing people who lived with the profoundly deaf person, learned ASL so they cold speak to him, went to deaf-advocacy conferences with him, and dialogued with the profoundly deaf person to learn from his experiences don't understand him.

And although I recognize that you're employing a rhetorical device, turning my own words against me like you did in your last sentence was spectacularly hurtful. I can't actually stop you, but I wish you wouldn't do that.
posted by dorque at 10:13 AM on February 10


I apologize that I hurt you; it was wrong for me to do so, and I will strive not to do so again. I hope in the future you won't be so dismissive of people fully debilitated by autism, because I found your erasure of them both cavalier and upsetting.

...The article is arguing against the perception--widespread among anti-vaxxers--that autism is just the worst thing ever, and that willingly allowing your child to contract a literally fatal disease is preferable to raising a child that just happened to be born autistic.

Please stop agreeing with that noxious pile, you guys.
posted by byanyothername at 12:16 PM on February 10


I have to confess, that's not what I hear them saying.

I would say that the anti-vax web sites that I've read believe that childhood diseases are simply no big deal. They consider the danger of getting measles (or whatever) to be vanishingly small, and the secondary danger of their child dying from it to be so remote as to be basically zero. Therefore, the disease is not a risk that warrants whatever risk (be it autism or "toxins" or whatever) they associate with the vaccine.

Anti-vaxxers are basically trading an imaginary risk of autism for a genuine risk of fatal infectious disease that they refuse to believe is fatal. They see it as a choice of "Either nothing happens to my child, or autism happens to my child."

That said, I repeat what I wrote before--if the folks on the high-end of the spectrum could guarantee that at worst, a person's autistic child would be like them, we might not even be in this anti-vaxx mess. But since they can't make that guarantee, I don't think those folks who hope their child doesn't have autism are prejudiced, awful people for saying, "I don't want autism to happen to my kid."

The people who are saying that "autism is not the miserable experience everyone thinks it is" can't guarantee you whether your autistic child is going to be Einstein with some awkward social skills, or that your autistic child will burn your house down one night because at 3am he suddenly developed an interest in fire. There's just no getting away from the fact that autism does have the potential to be an indescribably difficult experience for both the person with autism and their caregivers. If we don't talk about their lived experiences, how on earth are they supposed to get the assistance they need?

I do want to respect the experiences of caregivers, but if I'm weighing "caregivers talking about what it's like for autistic people," versus, "autistic people talking about what it's like for autistic people," I know which one I give more weight.
posted by Myca at 2:16 PM on February 10


All I can tell you is that a few years back I spent a lot of time listening to autistic people online giving me suggestions to aid my brother. I listened to them because I figured they had the disorder, therefore they knew more than I did.

I finally stopped because (a) the suggestions made no difference to him, and (b) whenever I tried something, he looked at me like a cow looking at a new fence.

That's my experience. I'm sure others have had different ones.
posted by magstheaxe at 12:21 PM on February 10, 2015 [8 favorites]


Myca, since my kid is 8 you'll have to take my word about what he expresses to me, since he's not quite ready to get a Mefi account just yet.

Its not just that he feels isolated - its that he is isolated. Its not that he feels different, its that he is different. Not just in emotional ways, but in a lot of other ways as well - everything from a school contingency plan for not making it to the bathroom in time to his difficulties with written work due to dysgraphia to his tendency to completely freeze and hide when he hears a loud noise (like, say, a fire alarm). Autism is (maybe) a deficit in executive functioning and decision making. Consider all the implications of that for a moment. Although he's intellectually gifted I have a lot of days when I wonder if he'll ever be able to actually hold a job or live independently, because he may or not be able to develop those skills.

And -- the punchline -- my son is actually pretty neurotypical, as these things go. If you met us in the supermarket, you would not immediately say "oh, there's something different about that kid". Other kids with autism at his school are non-verbal or violent. They are unable to independently use the toilet, or voluntarily feed themselves, or even understand when they're hungry. There but for a quirk of fate go I.

So, yeah, pretty different from being gay. Because whatever your sexual orientation, I'm pretty sure you can use the toilet independently every single time you need to.

People say "I'd rather be dead than..." about a lot of things, some big, some not big. Its not just about discrimination. Sometimes its about quality of life. I certainly don't wish that my kid, as he is today, were dead - not at all. What I did say was that "I would risk him dying if it would cure him."

My kid is currently at risk of dying from his "disorder" (or whatever you want to call it). He already tells me weekly how deeply unhappy he is with himself, his life. Were he gay, I could tell him that it would get better, that he'd grow up and find love - or maybe I wouldn't need to tell him that, because gender and sexuality isn't as much of an issue now as it was even ten years ago. But I can't even give him an "it gets better" speech, because I don't know that it will. I can't say for sure that he'll ever be able to function in the world and be happy. I can't say for sure that he'll ever -- EVER -- make a single friend. I certainly can't tell him that the world will eventually accept him for who he is - because wetting your pants? Not acceptable in any social circle, not ever.

Still, I do tell him those things. I might be lying to him. But I tell him anyhow, because I'm his mother, and I want very much for things to be ok. And I've told him, time and again, that we will do whatever it takes, try anything, to make him more the person he wants to be. Weird diets? Check. Strange vitamins? Check. Endless rounds of therapy, both physical and social? Check.

Given all this, were someone to come to me and say "we have a cure for your son, but about one in 1,000 kids will die from it (that's the statistical risk of dying from measles per the CDC, by the way. For comparison, the risk of conceiving a child with Anencephaly is about 1 in 5,000 and the risk of your child dying during a routine tonsillectomy is about 1 in 30,000) - would you like to take the cure, even with the risk?" I think we would likely take the risk. Because I have told him, time and again, that I will do anything I can to help him. And that, at least, is the truth.
posted by anastasiav at 12:37 PM on February 10, 2015 [10 favorites]


You probably shouldn't be insulting and petulant. The validity of your experience starts to diminish when you hop over that line.

Maybe the efficacy of someone's contribution to the conversation diminishes, but that doesn't invalidate their experience. Also, your entire first paragraph has the tone (to my ear) of an adult scolding a child which can be off-putting.

Autistic people get dehumanized a lot, and when you make these sorts of, "I know an autistic person and it's just the worst thing ever" generalizations, you're contributing to that.

I'm sympathetic to the viewpoint that by demonizing autism we dehumanize autistic people; however, having experienced first hand the serious financial and emotional burden that it brings to a family, I have an understanding of the hardship that a family can go through because of an autistic member. I can without contradiction say that I value people with autism and that I do not want that type of hardship in my life, and presented with an opportunity to forgo that hardship, I would take it. The issue that I have and other people seem to have with the article is that it in part can be read as downplaying that hardship. Personally, I don't think that's conducive to having an open discussion about what role we, as a society, can have in alleviating that burden.
posted by johnnydummkopf at 12:38 PM on February 10, 2015 [3 favorites]


I certainly can't tell him that the world will eventually accept him for who he is - because wetting your pants? Not acceptable in any social circle, not ever.

Only not acceptable if we consider it not acceptable. You're reifying the very thing you deride!

I can without contradiction say that I value people with autism and that I do not want that type of hardship in my life, and presented with an opportunity to forgo that hardship, I would take it

That does sound an awful lot like an invitation to anyone in your life with autism to just sod off, and it tells anyone with autism that they are not welcome in your life.

Seriously Mefi, I expected better than this.
posted by Dysk at 1:20 PM on February 10, 2015 [5 favorites]


You know, I want to add that trivializing issues faced by "high-functioning" autistic people is also incredibly offensive. It is not a charmed and rose-tinted life. No one is denying that autism encompasses legitimate issues and challenges, and I do have sympathy for people who are forced to care for autistic loved ones, often without adequate social and financial support. I know to a degree what it's like there.

But the article is about how harmful this dichotomy of "measles-or-AUTISM" is, where AUTISM is used as the worst case scenario for human life. The dichotomy and the attitudes underlying it are incredibly offensive and honestly outright bigoted. It affects the way people think about autism broadly, not just in the (factually inaccurate) context of vaccination. Autistic people are the last to deny that there are real issues with autism, but overwhelmingly the response to them is demonizing and dehumanizing instead of dealing with those issues. Better social services, better understanding of things like sensory issues and communicative difficulties, would go a lot farther in helping real autistic people than inappropriate pity and hangwringing and (factually inaccurate) negative stereotypes. It really is unbelievably hurtful to see people routinely regarding your existence as something less than human, worse than death; and then in the same breath completely dismissing whatever issues you face as "not serious enough."

That is what the article is about. To see it repeated here is... I don't know. I'm having a hard time writing coherent posts.
posted by byanyothername at 1:31 PM on February 10, 2015 [9 favorites]


Also, your entire first paragraph has the tone (to my ear) of an adult scolding a child which can be off-putting.

And, yeah, I know and I apologize. I don't like going off like that, and it's not a style that I do very well, but at the same time I think there's tons of ignorance, fear and misunderstanding going on in this thread and I'm trying, but it isn't my job to be nice and a good educator in response to that.

It's very frustrating to have a thread full of neurotypical people with varying levels of experience with autistic people not see that more support, more services, better and more accurate popular understandings, etc. are what is needed to improve people's lives, not more negative stereotypes, more dehumanization and more framing of autism as "literally the worst thing ever."
posted by byanyothername at 1:50 PM on February 10, 2015 [4 favorites]


Dysk and byanyothername, a few of the posters here (particularly the people you're disagreeing with) have been very open and honest about our lives as caregivers for people with autism.

I ask you honestly and with genuine curiosity: do you personally either have autism or provide direct care for someone who does? Because it feels like what you're saying is "your description of your lived experience with an autistic person is hurtful" and that, in itself, is pretty dismissive and offensive.

I think magstheaxe nailed it above: Nobody (not even the most, uh, passionate anti-vaxxers I know) is saying that autism is the worst case scenario for human life. Most of them see it for what it actually is - a lifelong disability that (best case) impares personal relationships and (worst case) can lead to a person being essentially institutionalized and vulnerable for most of his or her life.

But, right now, its the boogeyman. There is a definite rise in the prevalence of autism, and its not just because of better diagnosis. Nobody knows why. And, that uncertainty, that lack of even an illusion of control, is very scary for some people. Some parents have (erroneously) locked onto vaccines as causing it, and (because they see childhood illnesses like measles as "not serious") they are using some magical thinking to say "If I don't do this then my child my child might become ill but s/he won't have a lifelong disability."

The issue is not that they are somehow making autism as "the worstest worst thing ever". The issue is that they believe they can use short term loss to somehow magically protect their child from a lifetime of difficulty. And that's very different from what you allege them to say.
posted by anastasiav at 1:50 PM on February 10, 2015 [4 favorites]


The problem is that there's such a wide, wide range of disability under the name "autism." Until they resolve that issue, high-functioning autistics will continue to feel overlooked in a discussion of autism because there's an emphasis on the nonverbal, violent, unpredictable behavior of the low-functioning autistic - IF that's where the emphasis is on a particular discussion, and caregivers and loved ones of nonverbal, inattentive autistics who are frequently violent and have no concept of boundaries will continue to feel shunned and isolated when discussion is geared toward the high-functioning autistic. And the idea that those who are dealing with the low-functioning, seriously disabled autistic person who cannot communicate is dehumanizing the autistic by speaking without his or her consent is ludicrous. How much time has the average person spent with a person with low-functioning autism in the first place? Probably not a great deal. And, to the caregiver or family member of the severely autistic person, the high-functioning one seems so close to the neurotypical person as to hardly be in the same ballpark.

So the problem comes down to a way-too-wide range of disorder under one name. In time, they'll get the funding figured out so that both levels of autism can be funded under their own merit, but my suspicion is that at the present time funding for Asberger's and higher-functioning autism relies on being under the larger umbrella of generalized autism - meaning the more disabiling form.

Both disorders deserve all the funding and research they can get; both are disabling and not enough is known about the cause(s) and treatments to enable truly effective, long-term treatment. I personally have had contact only with low-functioning autistic patients in nursing homes and I know so deeply within my heart that no one needs help any more than they do.

Many years ago diabetes was just diabetes, whether a person was young or old. If it was severe it was treated with insulin injections, usually with porcine insulin. My sister actually was on that kind of insulin for a time when she was young; she also had to weigh her food and test her urine for sugar, since home blood testing wasn't yet available. They eventually determined that Type 1 and Type 2 diabetes are very different diseases - and then the treatment for both improved. The same thing will happen with autism, but it will take awhile; in the meantime, we can only support the study and treatment of anyone diagnosed as autistic and accept the fact that there are so many variations.
posted by aryma at 2:19 PM on February 10, 2015 [10 favorites]


I've written and erased a comment several times, trying to express my point of view here, but I'm not having a lot of luck. All I can say is that I wish that the time and energy (and money!) spent by groups like Autism Speaks on "awareness" were instead spent on community support that could help all autistic people. And I wish that attitudes towards people with differing abilities were not so awful. The American culture in particular values "independence" so very highly that it's just taken as read that not being independent is failure. If someone needs assistance with toileting, or uses an augmentative communication device, or in other ways needs help with daily living, that shouldn't condemn them to a life of friendlessness and poverty. I'm a godless socialist so I realize this will likely never happen in contemporary capitalist culture, but it's still where I choose to direct my efforts.
posted by Daily Alice at 2:24 PM on February 10, 2015 [7 favorites]


And the idea that those who are dealing with the low-functioning, seriously disabled autistic person who cannot communicate is dehumanizing the autistic by speaking without his or her consent is ludicrous.

Well, yes and no. I think that especially some autism parent blogs divulge way too much personal information about their child's behavior and challenges, and the child can't consent. I wish people would think twice about publishing things about their kids that they wouldn't want published about themselves (seriously, would you like someone to post on Facebook about the time you wet your pants, or how often you masturbate?) In the name of "keeping it real", the Autism Hell brigade of parent bloggers contribute to prejudice against all autistic people.
posted by Daily Alice at 2:30 PM on February 10, 2015 [7 favorites]


I ask you honestly and with genuine curiosity: do you personally either have autism or provide direct care for someone who does?

Yes on both counts.
posted by Dysk at 2:44 PM on February 10, 2015 [4 favorites]


(Well yes, and previously yes, respectively)
posted by Dysk at 2:44 PM on February 10, 2015 [1 favorite]


It really is unbelievably hurtful to see people routinely regarding your existence as something less than human, worse than death; and then in the same breath completely dismissing whatever issues you face as "not serious enough."

Agreed more than I can even put into words today. This thread is terrible.
posted by dialetheia at 2:46 PM on February 10, 2015 [4 favorites]


Dysk, if you could go back in time and change something in order to be 'not autistic' would you do it?
posted by anastasiav at 3:12 PM on February 10, 2015


>>I can without contradiction say that I value people with autism and that I do not want that type of hardship in my life, and presented with an opportunity to forgo that hardship, I would take it

>That does sound an awful lot like an invitation to anyone in your life with autism to just sod off, and it tells anyone with autism that they are not welcome in your life.


I apologize for being unclear. Specifically, the hardship of raising and financially supporting throughout their entire life a low or moderately functioning autistic family member is one that I do not desire to have, foremost because, pragmatically, I would very likely not be able to, even with what constitutes gov't assistance in the United States. Furthermore, and everyone's experiences differ, it fractured my family and I have seen it fracture others as well. But maybe I lack a certain personal fortitude, so let's just ignore that. Because of this experience I have an understanding of the impact associated with the risk in starting a family of needing to raise a low to moderately functioning autistic child and I know that I personally would seek to lower that risk or impact as much as possible.

I, and I think a few others in this thread, are taking issue with the author of this article who, even in an article that is framed about the antivaxx debacle, seems to brush aside what is a very important experience in my life (and maybe the lives of a few other mefites), i.e., raising a low or moderately functioning autistic person can have a negative impact on other family members, and expressing that view is counterproductive to creating a higher profile dialogue about how our society can play a role in alleviating that impact.

This has nothing to do with how I view or value autistic people.
posted by johnnydummkopf at 3:16 PM on February 10, 2015 [3 favorites]


Dysk, if you could go back in time and change something in order to be 'not autistic' would you do it?

No. I wouldn't be me.
posted by Dysk at 4:02 PM on February 10, 2015 [10 favorites]


It's very frustrating to have a thread full of neurotypical people with varying levels of experience with autistic people not see that more support, more services, better and more accurate popular understandings, etc. are what is needed to improve people's lives, not more negative stereotypes, more dehumanization and more framing of autism as "literally the worst thing ever."
posted by byanyothername at 4:50 PM on February 10


I really don't understand how you're seeing that.

I feel like those of us posting in this thread are trying to grapple with a few issues at the same time, and it's all accidentally getting conflated:

* The way the public conversation about vaccine safety is being handled in the US
* The public narrative about autism, in general, with its emphasis on the the most difficult aspects of the disorder
* The belief that some people living with autism have that anti-vaxxers contribute to the public narrative about autism in an extremely negative way
* The issue of who is best equipped to speak for those persons whose autism is so debilitating that they're currently unable to share their own personal stories in the public narrative
* The issue of how people with high-functioning autism may or may not ignore the experiences of persons with debilitating autism, or the issues facing their loved ones and caregivers
* The issue of how sharing the stories of persons with higher-functioning autism may or may not contribute to stereotypes about autism
* The issue of how sharing the stories of persons with debilitating autism may or may not contribute to stereotypes about autism
* How to share the experiences of persons with debilitating autism so they can get the public support they need
* The "high-functioning" versus "low-functioning" divide, and how real it is, or is not.
* The very wide range of autism-related disabilities, in general

...and so forth. There's a lot going on in this thread.

I don't think people posting in this thread disagree that "more support, more services, better and more accurate popular understandings" of autism are needed. Certainly in previous autism threads here in the Blue, that viewpoint has prevailed.

What I think may be happening is that some people are assuming others are posting about certain of the above issues, when they're actually posting about different ones, and everyone ends up talking past each other.

My bottom line is this:

I find it frustrating that the effort to do away with negative stereotypes about autism seems to be focused on (a) minimizing the very real and intense difficulties faced by people living with debilitating autism, and (b) silencing the families and caregivers of those folks. To borrow johnnydummkopf's words, the author (and others like her) seems to brush aside the reality that life as a low or moderately functioning autistic person can have very very hard both on that person and on other family members.

I'm confident that it's possible to argue for vaccines without demonizing autism, but I for one am not going to erase people on the other end of the spectrum when I do so.
posted by magstheaxe at 4:21 PM on February 10, 2015 [5 favorites]


No. I wouldn't be me.
posted by Dysk at 7:02 PM on February 10


I openly acknowledge that this is a derail, but...I've never understood this mentality.

I'm not the same person I was ten years ago. I won't be who I am now in another ten years. Heck, depending on how things go, I might not be me next week.

People change away from themselves all the time. But our changes are usually very very gradual, so unless we take the time look back over our lives with a dispassionate, studious eye, we don't feel those changes. So we feel like we're ourselves when in reality? We've changed so much we wouldn't recognize ourselves on the street.

I've seen people refuse certain things in their lives because "But then I wouldn't be me!" even after they've gone from couch potato to marathon runner, or had major personality shifts due to meds that helped them successfully manage an illness, or left a bad relationship and finally felt free.

I'd be willing to bet next week's paycheck that if your autism slowly phased itself out of your life over five years, you'd be astonished at how much like yourself you felt, even as everyone around you said "Wow, Dysk has really changed!"
posted by magstheaxe at 4:34 PM on February 10, 2015 [3 favorites]


Oh, and if anyone cares, I did find Dr. Naseef's article When the Bough Breaks: A Father’s Story as a free PDF online (mentioned in my earlier comment upthread).
posted by magstheaxe at 4:37 PM on February 10, 2015 [1 favorite]


I'm not Dysk, but I wouldn't be me except for all the things - good, bad, and otherwise - that have gone into the me I currently am. I like this me. I might very well like a different me, one that was straight or white or male; one that was Deaf or having/being some other condition currently considered disabling or non-typical. But I don't know. I do know I like this me, and therefore I wouldn't change any of my past experiences or conditions, even the less than ideal ones.

Like, if I went from being a couch potato to being a marathoner - well, I would still be all the things I was when I was a couch potato and also a marathon runner. Different? Sure. But also not different, because I didn't not have all the couch-potato experiences just by becoming a runner later on.
posted by rtha at 5:10 PM on February 10, 2015 [5 favorites]


I openly acknowledge that this is a derail, but...I've never understood this mentality.

This isn't about the sort of "change" that one goes through as one ages, though (changes in personal tastes and viewpoints and experiences and so forth); this is about a change to a fundamental and essential part of who one is that informs and influences every aspect of one's experience of and interaction with the world. Asking someone who's autistic "would you go back and NOT be autistic?" is like asking "would you go back and be male instead of female? Straight instead of gay?" In a very real sense, if you took that away, you'd have a fundamentally different person.
posted by Pseudonymous Cognomen at 5:10 PM on February 10, 2015 [5 favorites]


I look back at myself when I was in my 20s, then 30s, even 40s, and I'm so different now from what I was earlier. I was an angry athiest for most of my 20s, then a Bible student and then committed Christian for my 30s and early 40s, then and now an agnostic, but now I'm comfortable with the idea of reincarnation and the many lives it would take to make me wise enough to understand the plights of others - just as an example, from the religious standpoint.

I was SO eager to be a wife and homemaker and mother of many children, seriously wanting to be a good wife more than anything. Then, marriage over and only one child, I wanted to be the world's best mother and put everything I had into making a great relationship with my daughter - and when she ran away at 14, messing with drugs and what they'd now call oppositional defiant disorder - but there was no help to be had then - I failed at motherhood, I thought - in my mid 30s. In my 40s I became a grandmother and hoped to do a better job - I put all my 40s and some 50s into it and I'm pretty sure we came out okay. Then, in my 60s, my daughter transitioned to a son and, at last, we have the good relationship I wanted. As another example of how things change.

Top-notch secretary for 11 years, CNA for 11 years at half the salary but twice the reward, medical transcriptionist for 10 years - good salary and rewarding, too.

Someone once said, and I quote it all the time: If you're the same person at 50 that you were at 20, you've just been taking up space on the planet for 30 years. If you don't change - drastically - over the years, you aren't growing, you're stagnating. That's what I say to myself, but I'd say it to others, too, because I believe it to be absolutely true.
posted by aryma at 5:17 PM on February 10, 2015 [1 favorite]


Pseudonymous Cognomen, I just have to say this: My sister was a diabetic and epileptic, starting at about the age of 11. She died when she was 27, blind, with no teeth, on kidney dialysis for years, having a tongue that was just a mass of scar tissue which made it very difficult to eat. She'd had two major heart attacks and had lost one foot and part of the other, as well as some fingers, to amputations.

If someone had asked her if she would have chosen to not be diabetic or epileptic, I know what her answer would be. Of course YMMV.
posted by aryma at 5:24 PM on February 10, 2015 [1 favorite]


Thing is, my autism isn't killing me or anything.

I'm not going to say that we merely are the sum of our experiences, but I do think that who we are is inextricably linked to the sum of our experiences. Asking if I would go back and be not autistic? You're talking about changing literally every single experience I've ever had on a fairly fundamental level. My life, my self would be incomparably different. Would that hypothetical other person be happier than me? Maybe. But I'd rather exist myself.
posted by Dysk at 5:40 PM on February 10, 2015 [5 favorites]


My sister was a diabetic and epileptic

I'm terribly sorry, but that has absolutely nothing whatever to do with autism and isn't remotely comparable? NB: I'm autistic. As are several other people posting in this thread. Having our neurological differences (which is what they are) compared to severely disabling and potentially fatal diseases is not especially helpful and doesn't really contribute very much to the conversation. I'm sure that a majority of people with epilepsy and diabetes would very happily take a cure if one were available. I'm equally sure that most adult autistics who are capable of expressing their personal preferences and desires would NOT wish to be "cured", if such a thing were even possible.
posted by Pseudonymous Cognomen at 5:46 PM on February 10, 2015 [10 favorites]


Just poking my nose in here, because of the title.

I am not autistic, though on some internet are-you-autistic quiz, I score like 34 where the 'Alzheimer's score' was 36 or greater. I also had measles when I was 17, thanks to the little brother of my then girl friend, and me confusing chicken pox with the big M (so I exposed myself).

Measles, even when you don't die, is hell:
3 days of the worst cold you ever had.
36 hours of the measles (the spots) breaking out. Light is intolerable. Pain is pretty constant. Movement is also intolerable.
Followed by: 6-8 weeks of coughing all the time. I mean AllTheFuckingTime!.

The only thing worse was the infectious earache I had at age 4--before penecillin was generally available. That lasted only one day, but I recall it as the worst day of my life.
posted by hexatron at 6:31 PM on February 10, 2015 [1 favorite]


So, like, this isn't a 'gotcha', but I can't help but notice that the actually autistic people in the thread are on one side of this discussion, and that the folks who are really vociferously on the other side tend are often close family or caregivers.

And it's not like that perspective is wrong or should be disregarded or anything, but it seems to take a discussion of an article about how "being autistic shouldn't be considered the worst case scenario," and turn it into a discussion of "how hard this all is on the poor caregivers."

Which, again, is a legitimate and true thing! It's got to be really hard! But you've got to understand why some actually autistic people might react badly to that shift in the discussion, and see it as an instance of neurotypical folks making a discussion about "the life quality and lived experience of autistic people" all about "how hard it is to cope with autistic people".
-----
Also.

One of the things that baffled me for a long time was people who were opposed to cochlear implants for the deaf. I understood the arguments about them being imperfect and risky, but I figured, "a chance a hearing, even imperfectly, has to be better, right?"

Then I noticed that most of the people opposed were deaf, and most of the people in favor were not. That changed things for me.
-----
I'm struck at how astonished people are that Dysk wouldn't choose not to be autistic. If you're mystified by a widely held position within a certain group, and that position is about that group, maybe take a pause?

Nothing about us without us.
posted by Myca at 7:05 PM on February 10, 2015 [16 favorites]


> If you don't change - drastically - over the years, you aren't growing, you're stagnating.

But this isn't what Dysk and I are talking about. Or, not to speak for Dysk, it's definitely not what I'm talking about. I'm not talking about that kind of change; I'm definitely different in many important ways from the person I was when I was 20 (and 30, and even 40, which isn't all *that* long ago).

When I came out to my mom, she cried. She didn't cry because she hated gay people. She cried because she was so afraid my life would be hard and awful, and that people would want to hurt me. She didn't want her child to suffer. Thing is, of course - and she acknowledged this easily as we talked more - her life as a heterosexual woman wasn't exactly a bed of roses. Her heterosexuality did not prevent suffering or hardship.

She and my dad spent a long time - years - talking about whether or not to bring a mixed-race child into the world. It was the early 60s then. That was a conversation they felt they needed to have: do you bring a child who you know will be disadvantaged by society into that society? Is that the responsible/moral/right thing to do?

Being a woman, being gay, being a person of color: these are all fundamental things about me that haven't changed and don't look like they're going to. They inform how I see the world, and how the world sees me. They are not things I would change, even though aspects of all those things have at times made my life hard, unpleasant, even dangerous. It's not at all like "I used to be a Republican, but then I changed as I got older." It's deeper and more central than that.

> Nothing about us without us.

*fist-bump*
posted by rtha at 7:18 PM on February 10, 2015 [12 favorites]


magstheaxe said: To me, that's like saying someone who lost some hearing in one ear as they got older understands all of the issues faced by someone profoundly deaf from birth, and that the hearing people who lived with the profoundly deaf person, learned ASL so they cold speak to him, went to deaf-advocacy conferences with him, and dialogued with the profoundly deaf person to learn from his experiences don't understand him.

I'm deaf and actually ... this is true. It's not completely true of course, since deafness is primarily a disability of communication, but overall? Yeah, it's true. I personally find a lot more common cause with other deaf people, with varying levels of deafness, than I do with hearing advocates. Even those deafened late in life.

Because hearing people are assholes to you no matter what your level of disability is. I mean, that's pretty standard. It doesn't matter how deaf you are, you're still going to run up against the expectation of perfect. In different ways, but it's a similar burden and hearing people react really badly to that expectation being challenged. Really badly. Whether you're deaf from birth like me or whether you're late-deafened. There's a commonality of asshole hearing people there that hearing advocates who are not disabled themselves in some way, or who are not queer or of colour (there is sometimes some fellow-feeling with these groups, not always, but often) do not get.

It doesn't mean they're any less advocates, or that they're any less sweet and helpful and kind. But: that's what they chose to do. It's a choice. They CHOSE to do that. Do you have any idea how rare are the people who do that? Who don't use their choice to be kind and generous against you when you are too tired to listen, or you misbehave by mumbling, or you don't understand something for the fifth time? Do you? It is so rare.

There are children with deafness born today with parents who refuse to sign with their children, believing that it will hurt their ability to learn to speak, and never letting themselves understand that their choice is going to deprive that child of communication and community and choice until that child can escape. If they ever do.

A lot of parents just ... refuse to sign with their deaf children. Fucking. Refuse. I've had carers who thought they were acting in my best interest hold down my hands when I tried to sign instead of speak a word that I had been struggling with for half an hour because I could not hear the word and had no idea what they were even asking of me, because it was fucking blank because I couldn't fucking hear it! I slipped out of my chair sobbing before they would let go of my hands. This is not an experience that is all that uncommon. Hasn't happened to everyone, but it's not rare.

It's not rare the way kindness and compassion and advocacy is. If you're a late-deafened adult, very often the ones who hurt you the most are your children, your spouses, your friends, because they love you but they don't love you enough to listen when you need them to repeat, to slow down, to rephrase, and they make it clear over and over that loving you like that is a fairweather thing that only happens when they feel like it.

Do I know that pain? Oh fuck yes I do. Does even the most well-informed, dedicated, loving advocate know that pain? Not unless they've experienced it themselves, and generally if they have ... then they're not advocating for me, they're standing WITH me. Even in their imperfect understanding, they get that it's a matter of STANDING WITH ONE ANOTHER.

So, yeah, with my imperfect understanding, and acknowledging that none of this truly maps at all to what it's like to be someone with autism, just like I don't expect anyone with autism to intuit what it is like for me as a deaf person, I'm going to stand with the autistic people here. Numbers of their ilk have stood for me before, and stand with me even now, and I stand with them too. It's the least we can do for one another in this world of assholes.
posted by E. Whitehall at 7:46 PM on February 10, 2015 [21 favorites]


Well then I'm off base. My apologies.
posted by aryma at 7:56 PM on February 10, 2015 [1 favorite]


I'd be willing to bet next week's paycheck that if your autism slowly phased itself out of your life over five years, you'd be astonished at how much like yourself you felt, even as everyone around you said "Wow, Dysk has really changed!"

Well, it didn't phase out, but i think many people who have autism have had experience growing up where it was a fucking lot harder in childhood, adolescence, and the teen years than it is as an adult. Maybe some anxiety medication, learning coping skills and ways of dealing with things that work for you, learning in a sort of rote way how you should act in certain situations even if it makes utterly no sense to you, all kinds of stuff.

If this continued and it went away entirely that would be one thing, but the question posed that you moved the goalposts on considerably was "would you go back in time and change it if you could".

Never having had those experiences is a lot different than having an alternative experience in the future. I think going through that gave me a lot more empathy and understanding for others going through the same things. I feel like i have a lot more sympathy and tolerance for mental/emotional/anxiety issues i see other people dealing with on a day to day basis than the average person whose just never been there.

They answered "i wouldn't go back in and time and change it", and the you switched it to the future. That's not the same thing at all. Not even remotely.

Another thing to consider, is that for a lot of people, the network they built up around them is of similar people who at varying levels seem to struggle with the same stuff, or just other mental weirdness. If you went back and time and reset it, it's possible i would have few or none of the same friends. And fuck that.
posted by emptythought at 11:49 PM on February 10, 2015 [2 favorites]


And it's not like that perspective is wrong or should be disregarded or anything, but it seems to take a discussion of an article about how "being autistic shouldn't be considered the worst case scenario," and turn it into a discussion of "how hard this all is on the poor caregivers."


You mean like the mother of the 8-year-old boy? The one whose every waking moment is given to making life work out better for the child she loves more than life itself? Is she one of those "poor caregivers" who complain about how hard it is? Or the lady with the brother who has severe autism - the one who has researched and tried so many things and is still spinning her wheels and who comes here to point out how much she cares about him and wants to make things better for him - is she one of those "poor caregivers"?


But at the same time, if the goal is to increase acceptance and improve the lives of all people with autism, you don't help the folks who require 24/7 care by silencing their caregivers. Many of those folks simply don't have another voice.

Yes. This. Again. Please.
posted by aryma at 3:30 AM on February 11, 2015 [1 favorite]


aryma, you're missing some context. For a very long time, the only voices in the discussion (broadly speaking, not specific to this thread) were caregivers. Autistic people speaking for themselves has been rare until recently. Even now, I surround my internet presence with Autistic friends, and I still hear more from caregivers than from people like me.

By far the dominant narrative in discussions of autism is how terrible it is for caregivers. But further than that (and, small mercies, at least no one in this specific thread has done this), the next thing we often hear is that violence against us is understandable/justified because we're so exhausting for caregivers day in, day out.* Being told that we're silencing caregivers and being scolded for not being sensitive enough to neurotypical people's (genuinely difficult!) lives, when both are generally false and psychological injury is a common follow-up... it's very hard to hear that without having an immediate panic/threat response.



*I have plenty of examples, but they're potentially distressing for other Autistic people and including them just made this comment seem sensationalist; suffice it to say I am not pulling this out of thin air.
posted by dorque at 6:58 AM on February 11, 2015 [7 favorites]


You mean like the mother of the 8-year-old boy? The one whose every waking moment is given to making life work out better for the child she loves more than life itself?

To be fair, this describes not only me but pretty much every (loving) mother of every eight year old boy, ever.

This will be my last comment here (IEP meeting this afternoon, woo!) but I wanted to thank Dysk, and also E. Whitehall, in particular. The comment about deafness and advocacy gave me a lot of food for thought.

I think my view would be different if my child seemed basically content with who he is and how his life is going, but right now all I can do is listen to him and react to what he's telling me - and what he's telling me is how very much he hates being who he is. In three years we've gone from having a bright, sunny, intellectually curious child to a sad, lonely child who has lost any interest in doing, trying, or learning new things. The constant rejection by his peers has taken a heavy toll.

My view of the world is also colored, likely, by the adults on the spectrum that I know. For whatever reason, I have a lot of autistic adults at all points on the spectrum in my life, and each and every one of them seems basically unhappy with their life - even the adults with autism (Aspergers) that I know who are married and employed express pretty consistently how lonely they are and how they feel as though they don't fit.

Being the caregiver for my son is not awful. I adore him just as he is, and tell him so dozens of times a week. I love him unconditionally, and - were the world a more perfect place - would change very little about him. But to hear him, nearly daily, tell me how miserable he is - to have him ask me questions like "how could I get suspended from school?" and "why do all the other kids hate me?" is heartbreaking. In saying "I would change him if I could" I am not saying this for me, because my burden is not really that great. I am saying this because it is what he tells me. It is his voice that drives me to wish for a magic button. His words, expressed to me over and over again.

So, anyhow, thank you for the conversation. But please don't misunderstand that I feel like I would wish to change him because its what I want. I would wish to change him because it is, so clearly, what he expresses that he wants.
posted by anastasiav at 7:41 AM on February 11, 2015 [6 favorites]


I think my view would be different if my child seemed basically content with who he is and how his life is going, but right now all I can do is listen to him and react to what he's telling me - and what he's telling me is how very much he hates being who he is. In three years we've gone from having a bright, sunny, intellectually curious child to a sad, lonely child who has lost any interest in doing, trying, or learning new things. The constant rejection by his peers has taken a heavy toll.

This could well describe my childhood. As has been pointed out in the thread above, for an awful lot of autistic people it DOES get better. It's no guarantee (but then fuck if it's a guarantee when we tell it to queer kids - go on, ask me how I know) but it's still broadly true. It gets better. If there is acceptance and support, it gets easier to be. Without it, it might not. Again, much like with queer kids. It's no less of a lie to say to your child "it gets better" than it is for anyone to say that to their child.
posted by Dysk at 10:07 AM on February 11, 2015 [6 favorites]


...So, yeah, with my imperfect understanding, and acknowledging that none of this truly maps at all to what it's like to be someone with autism, just like I don't expect anyone with autism to intuit what it is like for me as a deaf person, I'm going to stand with the autistic people here. Numbers of their ilk have stood for me before, and stand with me even now, and I stand with them too. It's the least we can do for one another in this world of assholes.
posted by E. Whitehall at 10:46 PM on February 10


Well, as an asshole who's hearing is so far unimpaired, I can only say that I can appreciate the power of a common experience. I'm not sure I'm sold on the idea that it totally supersedes an already established, intimate relationship with someone not a part of that community, but I can certainly see how it might could.

Your post actually puts me in mind of an episode of the TV show Blackish (airing on ABC here in the US, for those not familiar) called "The Nod", which addresses the role of a certain gesture in African-American culture. Even if you don't know the black person you're walking past, and will never get to know that person, you give him or her "the nod" as you pass each other in the street. Not because you're going to run off and be BFFs, but because as a minority in a world that's been hostile to you and your kind more often than not, "the nod" is a statement of "I got you" because of the shared experience of living with that hostility. It's not an obvious thing, nor is it intended to be. But it's there, and historically it's been important. Irrespective of any signal, it makes sense that a similar not-obvious sense of in-group solidarity exists for folks living with autism or other disabilities.

That said, "the nod" has never been a guarantee that, should you find yourself needing aid or advocating for certain things, the nearest black person will come running to offer their support, and it's a mistake to interpret it as such. Shared experiences don't always result in shared values. People you assume will stand with you might not do so in the way you'd like them to, or even at all. Many times, for reasons relating to the very same common experience that ties you together, they're unwilling to do even "the least we can do for one another in this world of assholes".

So I might nod to Justice Thomas walking past him on the street, but I'm not expecting him to have the same viewpoint on standing with one another as I do. And FWIW, in my experience when you have a support gap like that, occasionally--not always, but occasionally--someone you've long since labeled an "asshole" because s/he's not part of your community will surprise you and reveal him or herself to be a pretty useful ally.

...By far the dominant narrative in discussions of autism is how terrible it is for caregivers. But further than that (and, small mercies, at least no one in this specific thread has done this), the next thing we often hear is that violence against us is understandable/justified because we're so exhausting for caregivers day in, day out.* Being told that we're silencing caregivers and being scolded for not being sensitive enough to neurotypical people's (genuinely difficult!) lives, when both are generally false and psychological injury is a common follow-up... it's very hard to hear that without having an immediate panic/threat response.
posted by dorque at 9:58 AM on February 11


I will make a concentrated effort to keep that in mind. Because the efforts I've seen by people in the autism community to re-frame how people with autism are viewed feel erasing. And as a family member, that generally prompts a strong frustration and dismay response in me, because it feels very much like a willingness to kick the most helpless members of that community to the curb in an attempt to make a specific sort of progress, progress that doesn't seem to include autistics like my brother.
posted by magstheaxe at 11:07 AM on February 11, 2015 [3 favorites]


Because the efforts I've seen by people in the autism community to re-frame how people with autism are viewed feel erasing.

And you really think that the efforts by the family and caregivers of some autistics to frame the discussion as being all about how terrible autism is isn't "erasing", somehow? Or the focus by a lot of parent communities on quack remedies like Lupron and chelation and fad diets and "curing" autism? I don't dispute that there are autistics who have severely impaired function in a lot of ways, that having a child with a severe intellectual disability is a very difficult thing, and that there need to be support services available for the families of those people. At the same time, though? There are a lot of largely invisible autistic adults, many of whom are more or less "high-functioning" (around 50-55% of all people with ASDs, in fact, are "high-functioning"), who nonetheless have problems--we have higher rates of PTSD and depression, an average 80-85% long-term unemployment rate, and much more difficulty generally in accessing services and support than we would if we were more obviously disabled. The "specific sort of progress" most autistic self-advocates want to make? A realisation that no, we're not horribly broken or defective, merely different; that our existence isn't a tragedy, or a mistake, or something that needs to be solved so future generations don't have to worry about it. When someone says something about "curing" autism (which is a neurological difference that can't be "cured"), we can't help hearing it as "we want to make sure no-one like you is ever born again". Which, you know, feels pretty "erasing".
posted by Pseudonymous Cognomen at 2:35 PM on February 11, 2015 [4 favorites]


Because the efforts I've seen by people in the autism community to re-frame how people with autism are viewed feel erasing.

There's a difference between "erasing" and having to share the term autism with people who don't match your particular experiences. Nobody is trying to kick anybody to the curb at all, but we are trying to say that severe autism does not comprise the sum total of autism. We're trying to make room for our experiences, which actually have been erased from discussion of autism (unlike caregivers, which, I'm sorry, that is literally all anyone ever talks about when they talk about autism - see this thread - so I'm not sure whether we're just having conversations in different places or what). Maybe some of the friction is because of the recent DSM reorganization which eliminated Aspergers as a category, and the expansion of the word 'autism' to include people with what used to be called Aspergers hasn't reached everyone yet. Is that part of the disconnect here?

The double bind that "high functioning" autistics are in was stated perfectly upthread: we're too high-functioning for our difficulties to be taken seriously, but autism is also seen predominantly as a horrible outcome that will ruin your life and the lives of those who love you so it has a horrible stigma. Because of rhetoric about how autistic people are always difficult, incapable of empathy, etc etc, I don't even feel comfortable telling people close to me about my autism, whether it's mild or not; I'm much better off 'passing' as neurotypical, even when it makes me look flaky and stupid when I do have difficulties. Rhetoric about how awful autism is makes my life measurably more difficult and keeps me in the closet when I would much rather be open with people about who I am and what limitations I have.

Here's a good example: I have severely intense sensory responses to having water on my face and have never been able to swim because of it, despite years of pointless swim lessons (I never got past blowing bubbles). I don't even like washing my face every day - it took me years to finally get up the habit and I still have disproportionately intense feelings every time I do it. My mother in law wants me to learn to swim REALLY BADLY, and thinks I'm a less functional human being because I can't do it, but she doesn't know I'm autistic, and she certainly doesn't know how poorly I react to water on my face and why it's such a big deal to me. She bothers me and shames me about it every time it comes up, but it's still easier for me to put up with her thinking I'm some obnoxious special snowflake than to try to explain my autism sensory responses to her. The main reason is that her response would be, "oh you can't be autistic, you seem so normal! you have empathy and everything!", and I know that's how she'd react because that's how damn near everyone reacts. That reaction stems directly from the pervasive idea that autism means severe autism only, and leaves no room for high-functioning people who might be able to pass a lot of the time in certain circumstances.

So I guess I just don't even recognize the world you describe, where high-functioning autistic people are dominating the conversation or where caregivers are being 'silenced' and 'erased' by high-functioning folks, when that's literally all I ever see talked about when autism comes up and that's the only response I get when I tell people about it. Autism has strictly meant severe autism for a long time, and I think we're seeing more pushback from higher-functioning autistic people because according to the psychological establishment, we don't have Aspergers anymore, we just have a different degree of autism. If that's the new definition, there needs to be room on the spectrum for us, too, and to be accused of "silencing" caregivers by asserting our rightful place on the spectrum is quite hurtful.

* I'm sidestepping all the ableist issues with defining people as "high functioning" and "low functioning" because I don't have a better vocabulary for it, but as others have pointed out in this thread, it's highly context-dependent, and those terms can be problematic.

When someone says something about "curing" autism (which is a neurological difference that can't be "cured"), we can't help hearing it as "we want to make sure no-one like you is ever born again". Which, you know, feels pretty "erasing".

Yes, exactly. And being badgered about whether we'd rather go back in time and change ourselves to be not-autistic certainly doesn't help. That was one of the more offensive things I've seen on the blue in quite some time. I mean, I'd also like to be not-depressed and not-short, but I wouldn't go around interrogating people about whether they'd rather not be born than be depressed or whatever. Jesus.
posted by dialetheia at 2:49 PM on February 11, 2015 [16 favorites]


My 75 yo mom's autistic, I'm autistic, and my 17 yo son is autistic. My son very obviously didn't get autism from the MMR vaccine, and I think the MMR is a safe and important health intervention. But I'm frustrated by how snarky the article is about parents who, for various reasons, don't vaccinate their children.

And I'm not a fan of Autism Speaks, but as a parent of an autistic kid, I found the article frustrating in that regard too. Speaking for and making decisions for our children is a huge, inescapable part of the job of all parents, whether our kids are on the autism spectrum or not. It literally cannot be avoided, and being snarked on for that hurts as well.

And to top it all off (in regards to the article at least), my son is severely phobic about shots. He would refuse them all if I let him. So there's really no winning. I either have to disregard his autonomy and voice or I have to disregard his doctor's recommendations (not to mention the article author's very strong opinions about public health).

The immense job of attempting to balance my child's very legitimate wants and needs as a fully worthy human being with the wants and needs of society has been, without a doubt, the most painful, frustrating, tragic part of raising my son these past 17 years. It's an incredibly difficult job, and someone always seems to be angry about it. And the balance doesn't always play out the way the article's author seems to think it does- society's needs are legitimate too. And my needs are legitimate too. My son's doctor's needs are legitimate. His teachers' needs are legitimate. Other students' needs, his future employers' needs, his future romantic partners' needs. And his needs. It's endless, sad and frustrating, and I wish we could all talk about it without the huge wall of snark and blame.
posted by shiawase at 2:50 PM on February 11, 2015 [4 favorites]


And you really think that the efforts by the family and caregivers of some autistics to frame the discussion as being all about how terrible autism is isn't "erasing", somehow? Or the focus by a lot of parent communities on quack remedies like Lupron and chelation and fad diets and "curing" autism?
posted by Pseudonymous Cognomen at 5:35 PM on February 11


I'm looking back over my comments. I don't see where I said those things, and I'm pretty sure I didn't imply them. I certainly hope I didn't, and I apologize if I did.

The "specific sort of progress" most autistic self-advocates want to make? A realisation that no, we're not horribly broken or defective, merely different; that our existence isn't a tragedy, or a mistake, or something that needs to be solved so future generations don't have to worry about it. When someone says something about "curing" autism (which is a neurological difference that can't be "cured"), we can't help hearing it as "we want to make sure no-one like you is ever born again". Which, you know, feels pretty "erasing".
posted by Pseudonymous Cognomen at 5:35 PM on February 11


Of course it does. We're not disagreeing here.

I think where we're disagreeing is on how the public conversation should take place. Both sides want their stories told, and both side feel that too much emphasis on the other side's story hurts the perception we each we want to create.

I don't know how to resolve it, I really don't. All I see is that neither side (and yes, that means mine included--especially so!) seems willing to work together, and all too willing to take offense at each other.
posted by magstheaxe at 3:37 PM on February 11, 2015 [3 favorites]


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