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First Autistic Presidential Appointee Speaks Out
October 11, 2010 6:36 PM   Subscribe

"We need to stop making autism advocacy about trying to create a world where there aren't any autistic people and start building one in which autistic people have the rights and support they deserve." In December, Ari Ne'eman was nominated to the National Council on Disability (NCD), becoming the first autistic presidential appointee in history. In response, "one anonymous emailer to a federal agency in Washington wrote that 'assholes like Ari Ne'eman' should 'have their tongues cut out' for suggesting that autistic people need respect, civil rights, and access to services more than they need pity and a cure. This conviction has made him a leader of the emerging neurodiversity movement, which Ne'eman sees as a natural outgrowth of the civil rights, women's rights, and disability rights movements of the late 20th century." (Previously.)
posted by scody (50 comments total) 21 users marked this as a favorite

 
Also we need to fire Andrew Wakefield and Jenny McCarthy into the sun.
posted by Pope Guilty at 6:44 PM on October 11, 2010 [17 favorites]


I am farther along the autism spectrum than most of you. If they sold a cure for it, I'd buy it.

"Neurodiversity"? No, thank you.
posted by Joe Beese at 6:45 PM on October 11, 2010 [7 favorites]


Why can't we do both?
posted by Melismata at 6:48 PM on October 11, 2010 [14 favorites]


Yeah, this doesn't seem mutually exclusive, and I don't see him saying we shouldn't look at a cure. But there may not be one, or it may be 100 years off. In the meantime making life better for autistics seems like a good goal. (I'm only somewhat familiar with autism, though, so I don't know how to evaluate his ideas)
posted by wildcrdj at 6:51 PM on October 11, 2010


Autism is diagnosed by seeing how many of a list of characteristic symptoms you have. These are all behavioral in nature. There are many reasons why a person could e.g. fail to understand or engage in smalltalk, and so there are most likely many causes for the diagnosis called autism.

A "cure" for autism might be able to enable your empathy if e.g. you're lacking a particular neurotransmitter that causes empathic reactions, but not if e.g. your synapses are too twisted and complicated to interpret emotional expressions in real-time.

So I find it likely that some causes for the diagnosis called autism can be cured, but not all.

It's common for autistic people to learn behaviors that let them pass for normal. Some manage to do this nearly all of the time. Is that a cure? Well, they no longer exhibit the behaviors that led to them getting the diagnosis in the first place. If you tried to get them diagnosed now, you would fail. Is that a cure? It depends on what you call "autism".
posted by LogicalDash at 6:53 PM on October 11, 2010 [2 favorites]


This is Good.
(No one is rejecting a cure. Getting assistance, and community wide resources early, often and strongly. Community resources can mean the difference between more stories like that of Sky Walker, rather than stories like that of Donald)
Children in the autistic community are particularly vulnerable to being lost and forgotten; this can have terribly tragic consequences. People often minimize the effort required to get assistance under current systems, and play up the "seeking drug therapies", which are generally last, or at least secondary resorts... efforts like the one described here contain the seeds for a program that is something we can be proud of as citizens of 21st century modern America.
posted by infinite intimation at 6:58 PM on October 11, 2010 [2 favorites]


I don't believe that anyone should be discriminated against or denied access to services - whether they have autism or not.

But I don't need "respect" for my neurological disorder. I need some pills to control it with.
posted by Joe Beese at 6:58 PM on October 11, 2010 [5 favorites]


Choosing not to discriminate against someone is itself a form of respect.
posted by LogicalDash at 7:04 PM on October 11, 2010 [2 favorites]


Logical - that's pretty much the idea behind early behavioral intervention (also goes under the name applied behavior analysis), which is the only evidence-based intervention for autism.* This aims to teach skills, mostly social, that autistic children don't pick up on the way NT children do. In younger children this involves reinforcing things like eye contact and shared attention. In older children, this involves learning to anticipate other people's responses, by learning situations by rote.
*(Nothing else has been conclusively demonstrated to make much of a difference, and it's not ethical to deprive autistic children of the standard of care while they undergo other treatments, so it's difficult to attribute improvements to diet or other non-proven interventions. This is not to say that they aren't making a difference, but it's secondary.)
The question of whether it's a cure or a treatment is still debatable, as there isn't yet much neuro research on the long term outcomes of behavioral intervention. (there's only about 8 years worth of neuro research into autism, period.) Given the high degree of plasticity in development, it's likely that early intervention shifts brain development considerably.
Behaviorally, early intervention gives children the skills they need to participate in society. It doesn't make them neurotypical (I work with high-functioning autistic kids, and they have anything from quirks to serious difficulties in some areas,) but it does make things easier for them and their parents. And we have the autism awareness movement to thank for the increased awareness about early intervention.
Pope - seconded.
posted by KITTYFLOWER at 7:13 PM on October 11, 2010 [4 favorites]


p.s. I am not dissing on medication, but it doesn't have long-term effects
posted by KITTYFLOWER at 7:16 PM on October 11, 2010


It seems like "autistic" simply isn't a very descriptive diagnosis and that many people within it have wildly different needs and capabilities, which I kinda feel like everyone who's gone to college should know. So the challenge for him will be to enlarge the possibilities for high-functioning diagnosees without compromising care for those less able to function in general society.
posted by klangklangston at 7:25 PM on October 11, 2010 [4 favorites]


OK so, one more thing: Ari Ne'eman doesn't address the significant population of mentally retarded autistics. While many autistics are capable of becoming self-sufficient individuals, many are not, and I suspect that those are the ones on whose behalf the angry letters are written. High-functioning autistics & Asperger...ians? are a different thing entirely, and I feel as though Ne'eman should clarify.
posted by KITTYFLOWER at 7:31 PM on October 11, 2010 [1 favorite]


...what he said.
posted by KITTYFLOWER at 7:32 PM on October 11, 2010


But I don't need "respect" for my neurological disorder. I need some pills to control it with.

But that's exactly the point: that neuro-atypical people should have the self-determination to decide that, and that regardless of how "fixed" or "unfixed" they are, they are worthy of respect and the revolutionary notion that even the "dysfunctional" life may very well be loaded with value, purpose, and fulfillment to the person living it.

I don't have an autism spectrum disorder, but I am . . . odd. In some ways, I've always been sorta Temperance Brennan + Dexter Morgan: perplexed by conventional people's ordinary reactions to things -- feeling a bit like everyone else got an instruction manual I didn't. That doesn't mean I want to be re-made in their image, though.

And I find the the 20th-21st century US is openly hostile to or at least disrespectful of anyone being even that slightly off-kilter or outside the very narrow boundaries of "normal" interpersonal interaction. God forbid you should be noticeably unusual.

Obviously, if you have significant neurological or developmental issues that make it difficult to be safe and take care of your own basic needs, then we want to address those. But the goal should not be making people on the autism spectrum "like everyone else" -- it should be making them able to find a niche that is comfortable, stable, and successful on their own terms.
posted by FelliniBlank at 7:54 PM on October 11, 2010 [9 favorites]


It's the best is the enemy of good problem all over again: to quote Ne'eman from this interview, "Instead of focusing on things like quality of life and civil rights, the autism community has been distracted by narrow questions of causation and cure." Living with autism for some people is expensive, and if the orgs raising money are dumping everything into finding a cure instead of support services it becomes even more expensive. (and then there's the other hoops he mentions about no dual-use assistive electronics and the broader issue of institutional vs. home-based care and about one diagnosis of autism rather than another being cause to cut off government assistance...if there's one thing I and my family have come to realize about getting assistance with disability issues is that it's incredibly dehumanizing)

And, no, I don't think autistic individuals wanting a cure for themselves to be a problem; the problem is when the "cure" is forced on people who are able to make decisions for themselves. The fighting here isn't between two different camps of autistic people, it's between autistic adults and caregivers/parents of autistic children.
posted by Electric Elf at 7:56 PM on October 11, 2010 [7 favorites]


I'm not entirely neurotypical, and would appreciate pills that helped me with some skills and abilities that I would need no matter how tolerant the society I lived in. However, I have noticed a blind adherence to doing things in very specific ways not because of efficiency, but out of some kind of xenophobic metric where being more that one standard deviation from the mean is considered a failure even if that enables you to accomplish more with a few changes in how you are expected to approach things. We have a society that is unhealthily concerned with clocking in to work for a fixed number of hours and often totally unconcerned with output or productivity. There is always another metric to measure success by, and an OCD like fixation on effort is not always best.
posted by BrotherCaine at 8:20 PM on October 11, 2010 [1 favorite]


No one is rejecting a cure.

Actually, that's not true. I believe that Temple Grandin has said publicly that if a cure for autism were available she would not take it.

I can see both sides of the argument, even if I disagree with some of the ways in which the debate is being put forward. There is a concern that the autism-spectrum culture might begin to reflect parts of the deaf community, who reject cochlear implants for their children because they want to keep them "in the deaf culture", or the people from disabled groups who madly protest every consideration of euthanasia, convinced that they are going to be rounded up and put before death panels. They fear special interests run amuck.

On the other hand, I greatly respect Temple Grandin's position that society needs the non-neurotypical, as a valuable different perspective and set of skills (nicely summarized at her recent TED talk). And it goes without saying that greater awareness, understanding, and respect for those living with autism could not be a bad thing.

You're seeing, in part, the reaction of every privileged group when the rights of another are taken into account: eye-rolling, dismissal, a focus on "treatments" and "cures", and predictions of the fraying of society under the corrosive pressure of what they term "political correctness".

At both extremes of the debate, people are chanting the same thing: "One of us, one of us."
posted by Bora Horza Gobuchul at 8:21 PM on October 11, 2010 [5 favorites]


Actually, that's not true. I believe that Temple Grandin has said publicly that if a cure for autism were available she would not take it.

Temple Grandin can feed herself, dress herself and conduct some sort of conversation with other people. She doesn't need a cure.

The kids who sit alone rocking and mumbling to themselves all day need a cure.

Autism is not binary. Some autistics are in desperate need of being cured.
posted by GuyZero at 8:32 PM on October 11, 2010 [6 favorites]


Ideally, we'd have some flexibility in bringing different modes of thinking to bear on different problems. Avoiding a monoculture of the mind without making people dependent on others to shore up their neurological deficits.
posted by BrotherCaine at 8:33 PM on October 11, 2010 [1 favorite]


Bora Horza Gobuchul:There is a concern that the autism-spectrum culture might begin to reflect parts of the deaf community

Now, this is a self-correcting problem. As opposed to the deaf vs not-so-deaf controversy, if you're really a low-functioning autistic, chances are slim that you'll take a break from smacking your head and eating your own shit to give some grief to someone who's "not autistic enough".

Come to think of it, we should handcuff a real autistic to every maladjusted teenager who thinks that wearing a self-diagnosed Aspergers/autistic label excuses them from being a douche. They'll drop that nonsense like a hot potato.
posted by dr_dank at 8:48 PM on October 11, 2010 [2 favorites]


A "cure" for autism might be able to enable your empathy if e.g. you're lacking a particular neurotransmitter that causes empathic reactions, but not if e.g. your synapses are too twisted and complicated to interpret emotional expressions in real-time.

I don't think that's likely. It's like this - suppose I took you and dropped you off in a foreign country. Even if you looked like the resident population, any native could pick you out. No matter how long you had lived there. There'd always be some cultural reference, some mannerism that you wouldn't get. You'd "pass", sure, probably even fit in pretty well, if you were attentive and motivated. But you'd be never be 100% assimilated.

It's the same for (other) autistics, I suspect. I've worked really hard and learning the "social curriculum" and although I do so much better than I did when I was younger, I'm still very much a stranger in a strange land. What other people do so naturally and unconsciously, I have to emulate with a list of rules and edict and lots of conscious effort.

There's no pill that fixes that - unless you can treat it very young. But we don't even have good, objective diagnostic criteria. fMRI is still in the "bang the rocks together" stage of development, and our other tools are even more blunt. It's so exceedingly premature to talk about a "cure" for autism. We might as well talk about what color curtains we'd like on our vacation home on Alpha Centauri.

As for "autistic culture".... I dunno. I don't like people much. It's so much work to be around them. I dislike autistic people even more - it's even more work. I am pretty lazy, so maybe its me - but I just don't see autistic people forming a "culture". Their parents, sure.

But honestly.... I think the parents of autistic people are crazier than the autists, usually.

Yeah, being "normal" would change who I am. I'm down with that. What the hell have I been working so hard at it for ? You can't do anything in society if you can't fit in and assimilate to some degree. It's sort of the definition of society. I would change the part that makes that so hard in a heartbeat if I could.
posted by Pogo_Fuzzybutt at 8:58 PM on October 11, 2010 [8 favorites]


1) GuyZero, I find it kind of contradictory to say that "autism is not binary" and follow it immediately with the statement that "some [people with autism] are in desperate need of being cured." A cured-vs.-not-cured situation sounds awfully binary to me. It skips over the Temple Grandins of the world and the many things we learn from being around people who aren't like ourselves.

More accurate, I think, would be a quest for something better -- anything better, and the hope that someone could get there.

From my lay point of view, albeit one with direct experience with many people with varying degrees of autism, I'd wager that there are as many causes and kinds of autism as there are mental retardation or even cancer. We'll keep finding out more about these issues, but that doesn't mean that they'll go away.

And if we focus on a cure (again: like the all-encompassing word "cancer," it's probably not a matter of finding a single cure, no matter what the pink ribbons say), that still leaves out a large portion of society who inevitably won't be able to afford it, choose not to take advantage of it for whatever reason or simply have to live with the effects of these issues until they're at a point where they have the energy and wherewithal to deal with it. Like the survivors of the polio epidemic, the effects will ripple out for decades, even after any "cure" comes to pass.

2) Could some of the folks in this thread using the phrase "autistics" on its own (e.g. "an autistic") please not do so? It's like calling me a fattie or a brunette or a Size 9.5 Shoer; it's really reductive.

Please consider using people-first language ("people with autism" or "people with Asperger's"). Or, at the very least, refer to people with autism as autistic individuals/kids/adults. One person I know prefers to refer to her son as an autistic person because she sees it as an essential feature of him; however, everyone has different experiences. Still, it emphasizes the personhood.

Particularly when this thread is discussing the wide range of abilities and needs of very different people at different spots on the autism spectrum, reductive language isn't helpful.

(I'm sure there may be something even more current than this, and if someone would like to correct me, please feel free :P)

Thanks.
posted by Madamina at 9:03 PM on October 11, 2010 [2 favorites]


Joe Beese: “But I don't need ‘respect’ for my neurological disorder. I need some pills to control it with.”

I am just an ADD dude trying hard (with psychiatric assistance) to figure out the right dosage of stimulant to control my deal. However, I agree with the others; this really shouldn't be an either / or thing. Yeah, I know it's just ADD, and frankly in most cases ADD wouldn't even be a disorder a hundred years ago; it would be a casual irresponsibility that was seen as otherwise normal.

But that's the point, really. Our society is ostensibly tolerant of a lot of things, and has the moral openness thing down in a lot of ways; but we're very psychologically normative. People's minds are put under a lot of pressure to handle a lot of things – diverse social situations, the pressure of planning our lives for ourselves more than we've ever been allowed to, the responsibility of having complete control over our economic situations, gradually increasing marginal duties like bills, etc. When you think about it, it takes more ephemeral mental effort to live in our world than it's taken to live in almost any other society in history.

That pressure is huge. And it has a normative effect. There's essentially been a trade-off between byzantine moralism and ever-broadening practical necessities. Severely autistic people who once would have been shunned or worse now actually have a chance; but those in the middle, those lucky enough to be relatively functional, who in less complicated earlier times might have gotten by with just being labeled "lonely cranks" or even simply "eccentrics," are going to have a very, very hard time coping with the world as it is without a whole lot of good friends. At least that's been my experience in the ADD world.

I agree completely that we shouldn't slow down our search for a real cure for autism. That's a fine and noble pursuit. But we don't have a cure right now. Moreover, even if we cure autism, it's paramount for our society to learn to be more open and more welcoming to people who might not have the same sort of typical mental function as the majority. As an ADD guy, I'd frankly be happy to see all the money we spend on ADD drug research spent on autism drug research instead; but there's no reason to stop trying for social justice, too. Because social justice is something we can have right now – we have the ability to make the world a better place for those with these disorders.

So I think the search for a cure and the search for better treatment of autistics are both good concurrent goals.

However, I disagree with Mr Ne'eman. And I agree with you, Joe Beese. Moreover, I disagree with the reading some people here have had of this article:

wildcrdj: “Yeah, this doesn't seem mutually exclusive, and I don't see him saying we shouldn't look at a cure.”

infinite intimation: “No one is rejecting a cure.”

In fact, Ari Ne'eman specifically addresses this in the interview:

from article: “(... if someone offered you a pill to wake up tomorrow without autism, would you take it?) That’s an intensely silly question. How can I draw a line around one part of my brain and say that this is the autistic part, and the rest of me is something else? That way of looking at autism is predicated on the strange idea that there was or is a normal person somewhere inside me, hidden by autism, and struggling to get out. That’s not reality.” [emphasis mine]

I think that's a definitive answer: he rejects a cure. More specifically, he rejects the possibility of a cure, giving the interesting reasoning that he seems to believe that autism isn't a coherent and defineable disorder. He then seems to draw a parallel on this point with homosexuality, apparently arguing that autism is something people ought to identify with in the same way that they identify as homosexual.

It ought to go without saying that that's a very provocative thing to say, no matter how much Mr Ne'eman couches it in neutral terms. And I don't know if I can say I agree with him. I'll just say that, for the moment, I'm not really convinced.
posted by koeselitz at 9:16 PM on October 11, 2010 [6 favorites]


Wait, I don't get it. Is there some reason we can't simultaneously try to develop additional tools to help autistic people be happy and comfortable in the world they were born into, as well as helping to enlarge the common understanding of social and cognitive acceptability?

I mean, yeah, it's good that my best friend's kid learns to react to machinery noises with something other than shrieking, and that it's good to look people in the eye and say hello. But at the same time, maybe it's OK for his classmates to learn that not everyone has to interact with playground equipment in exactly the same way, too.
posted by KathrynT at 9:18 PM on October 11, 2010 [4 favorites]


The kids who sit alone rocking and mumbling to themselves all day need a cure.

By her own account, Temple Grandin was one of those kids until given special attention and opportunities to flourish in her own direction by adults who recognized she was reacting to be expected to do things "the right way" instead of "her way".

The point is that exactly what "autism" refers to is amorphous. There are people with a variety of different issues who fall under the umbrella or are considered part of the spectrum. Plenty of non-autistic people find dealing with people or getting social cues difficult too. What really matters is that people are accepted as having the strengths and weaknesses they have, and being allowed to develop toward what makes the most sense and seems most fulfilling to them.

Pills are great if someone is really having trouble in their own head, but there's no need to turn to them when the problem is that other people think you're weird.
posted by mdn at 9:28 PM on October 11, 2010 [1 favorite]


It seems hypocritical of Ne'eman to speak for everyone on the autism spectrum by criticizing a drug that doesn't yet exist. I would have thought that respect and support for autistic people included the freedom to choose for themselves.
posted by marakesh at 10:21 PM on October 11, 2010


if someone offered you a pill to wake up tomorrow without autism, would you take it?

Would it not be more considerate and sensible for everybody to change a little bit, than for one person to virtually undergo reincarnation.
posted by polymodus at 12:00 AM on October 12, 2010 [1 favorite]


I should say, by the way, that on consideration I think he's right that there will never be a cure for autism. There will be better treatments for autism, and there might be completely effective prevention of autism (though that seems far-fetched, genetic therapies and such aside) – but it's true that there isn't any such thing as a "cure" for any psychological disorder. That's just not how the mind works. You can't throw something at it and take away habits, coping mechanisms, ways of living, etc. I'm struggling with my dosage right now for ADD because I tend to fall into a certain pattern, using stimulants as an energy boost rather than an actual therapy; it's actually up to me to use the drugs in the right way. I am certain that, no matter what drugs we come up with, a person who really had autism could quite easily take them and remain autistic if she or he wished to.

It should suffice to say: nobody is ever going to take a pill and wake up a different person - not any more than we already do when we take valium or anything like that. That's not how psychiatric drugs work. They're only really paradigm-changing as part of a whole therapy.

And, lest it need be said, they can at times be very, very worthwhile. That's why some people really like the idea of more effective treatments for autism; not because they want to cut out part of their brain, or because they want to undergo (as polymodus puts it) reincarnation, but because it's a hugely effective part of their treatment, a part that might make the difference between just barely getting by and really enjoying life.
posted by koeselitz at 12:23 AM on October 12, 2010 [1 favorite]


The thing is: It seems to me that someone who has been autistic their entire lives will have 'learned' how to live like that. It's hard to describe what I mean exactly, but someone who's brain works in a certain way will have the rest of their brain adapt to that mode of thinking. So probably for an autistic person having their neurology change (if there was 'a cure') would be a very bizarre experience. Akin to a "neurotically" person taking hallucinogenics or something.

I think we need to give up on the idea of a single "normal" mental state and realize that chemicals can change the way our minds work. If there was a drug that made an awkward person "fit in" better and more able to read social cues, is it really a bad thing if they take it?
posted by delmoi at 1:04 AM on October 12, 2010 [1 favorite]


I worked as an autism expert for a few years in a well-regarded school system, and the kids we had in our program (and most good systems now have programs for kids on the spectrum in-house) really ran a huge gamut from non-verbal kiddies who shrieked and rocked to others who were able to interact more fully with their environment.

But the problem that we always struggled with was this: our job, ultimately, was to make these kids more "typical" according to our standards. And this never sat right with a lot of us.

To be sure, "floortime" activities with little ones that helped pull them out of their total isolation were successful. These kids were, over the years, able to interact more with others. But the training only went so far and could only do so much. It just wasn't possible with some kids on the spectrum for them to appear neurotypical. These kids stayed in their separate classroom because their behaviors didn't allow them to be in a typical group.

The higher-functioning kids who ran in circles and engaged in flapping behavior were in the average range of testable intelligence but spent a lot of time in Social Skills training where they were taught to behave in a way that society found normal (making eye contact, looking at the speaker, correct verbal responses, etc.).

The question for many of us remains: especially amongst the wide spectrum of autistic behaviors, why were we training kids to appear more typical? Was it because they made others uncomfortable? Because their parents wanted kids who acted "normally?" Just because a kid avoided eye contact and flapped, maybe there was value there in a place where we couldn't see it. And that was the line where many of us got stuck.
posted by dzaz at 3:17 AM on October 12, 2010 [6 favorites]


...and I guess this is where it's critical to consider the perspective of people on the spectrum and their incredible valuable input in drawing these lines.
posted by dzaz at 3:22 AM on October 12, 2010 [1 favorite]


Come to think of it, we should handcuff a real autistic to every maladjusted teenager who thinks that wearing a self-diagnosed Aspergers/autistic label excuses them from being a douche. They'll drop that nonsense like a hot potato.

That's barbaric, reprehensible, and inhuman



...to the low-functioning autistic, that is. I mean, forcing them to be near a self-diagnosed teenager like that. You might as well handcuff the autistic person to a hungry tiger, it'd be over faster and altogether less painful.
posted by hamida2242 at 3:52 AM on October 12, 2010 [1 favorite]


Reminder that 153 Congresspeople (i.e. most Republicans) voted against a bill banning the use of prison-style physical restraint, solitary confinement, and other violence (except in cases of imminent harm) on autistic and other disabled young schoolchildren; even though those practices have caused the deaths of 7 year olds and widespread physical abuse (sometimes fatal) on kids that young and younger. Again, the bill specifically allowed the practices to prevent self-injury or injury to others (and you could drive a bus through that loophole); and they still voted against it.
posted by hamida2242 at 4:04 AM on October 12, 2010 [2 favorites]


"Well I mean I know this bill bans fatal child torture but you know, state's rights and all that."
posted by hamida2242 at 4:06 AM on October 12, 2010


Please consider using people-first language ("people with autism" or "people with Asperger's").

As I've mentioned on MeTa before, people-first notation serves to further "other" people with the condition, as it's a notation used only with conditions that are perceived as negative. I'm not saying we should use adjective-as-noun (an Autistic, a Black), but adjective-first language allows "autistic person" to occupy the same semantic space as "skinny person," "black person," and "tall person."

We don't speak of "people of thinness," or "people of height," and so we shouldn't speak of "people with autism" without expecting to draw more attention to the autism, even if we mean to put the person before the condition.
posted by explosion at 4:20 AM on October 12, 2010 [5 favorites]


It seems like the biggest value would be teaching children how to communicate their needs most effectively. If a child is non verbal than this is something that needs urgent attention. It's not about making others feel less uncomfortable, but rather a benefit to everyone when good, understandable, communication skills are present.
posted by josher71 at 6:25 AM on October 12, 2010


mdn : Pills are great if someone is really having trouble in their own head, but there's no need to turn to them when the problem is that other people think you're weird.

Depends on "how weird". Really, sitting in the corner and banging your head against the wall has nothing inherently "wrong" about it - Except that such a person most likely cannot support themselves, and thus burdens the rest of society.

So, once we accept total dependence on the charity of others as "just peachy", we need to ask ourselves what implied rights that conveys on the givers. "None" seems the popular answer here on MeFi, but we can't have it both ways - Either leave them to the wolves, or do everything we can to try to cure them. Any middle ground there insults one or both sides of the problem. Or to put it another way...


polymodus : Would it not be more considerate and sensible for everybody to change a little bit, than for one person to virtually undergo reincarnation.

This right here perfectly expresses my core disagreement with bleeding-heart ideology. So I answer, Absolutely not, because "everybody" doesn't have the problem, the one needing repair does.

When talking about an issue that doesn't affect a person's ability to function in the world (including those portions of the world where "social safety-net" gives way to "physical reality"), such as color, minor handicaps, some religious beliefs... Then yes, society just needs to deal with it. When talking about an issue that means "you will rapidly die without our help", we have only two options - The practical one, let them die; and the ethical one, support them while looking for a cure.

"Just accept it" insults everyone involved in some cruel parody of compassion.
posted by pla at 6:38 AM on October 12, 2010 [2 favorites]


Assuming you include Aspergers syndrome along with the rest of the spectrum, I think I'll keep my brain the way it is, thank you. I'm also not sure I'd submit my relatives to being "fixed", since Aspergers has played an important part in shaping them as their gender.

I'm also uncomfortably aware that a "cure", unless we get better at genetic manipulation, is probably prenatal testing and selective abortion, same as Down's syndrome. For me, while I am not opposed to abortion for any reason the owner of the womb feels necessary, while I could understand wanting to avoid the parenting challenge of a fully withdrawn autistic child, I don't see aspies as enough of a problem to warrant removal. While I'd never judge the choices of other pregnant individuals and what they choose to carry to term (or rather I would, but I wouldn't seek to remove their right to do so), I'd no more select a child without a tinge of aspie over one with aspie traits, than I'd pick brown eyes over blue, even if I find the former more attractive.

Some of it is self serving. A child I produce will have aspie traits. My choice in male partners reaffirms this trend (I like 'em too smart for their own good, obsessive and monologuing) so I'd have to give up reproduction if the policy was to stop making them. about the only thing I'm afraid of is the depression/anxiety that's also part of my genes and statistically, part of the aspie package, but again, much like homosexual teens are more likely to be suicidal, some of it is just the price of being different.
posted by Phalene at 7:02 AM on October 12, 2010


Depends on "how weird". Really, sitting in the corner and banging your head against the wall has nothing inherently "wrong" about it - Except that such a person most likely cannot support themselves, and thus burdens the rest of society

I don't think people call a kid in that condition "weird" - and I doubt anyone would judge a kid in that condition to be fine in their own head. Anyone empathic would be concerned for their well-being. The aim is trying to work with people to help them become comfortable in the world so they don't need to bang their head against a wall. Like I said above, Temple Grandin was so ungrounded as a kid that she behaved in that sort of manner, but because her mother and other adults made a particular effort to reach out to her along her own lines, she was able to communicate and find her own way. Even if people thought she was odd, she could navigate the world.

So, maybe meds could help at certain stages, but not everyone has to act exactly the same - the point should just be that each person has their own way of living that works for them, and I am going by the common sense assumption that sitting in a corner and mumbling is not a mode of flourishing or being the best version of yourself that you can be.
posted by mdn at 7:48 AM on October 12, 2010


pla: So, once we accept total dependence on the charity of others as "just peachy", we need to ask ourselves what implied rights that conveys on the givers.

I believe the point is that people at many points of the autism spectrum can be less dependent and more self-sufficient given better education and assistive technology. And call me a skeptic, but for many cognitive differences that's likely to be as good as we can get.
posted by KirkJobSluder at 8:05 AM on October 12, 2010


It seems hypocritical of Ne'eman to speak for everyone on the autism spectrum by criticizing a drug that doesn't yet exist. I would have thought that respect and support for autistic people included the freedom to choose for themselves.

I don't think this is really what he means when he says that autism research should focus less on causes and cures. Autistic people won't be "cured," though treatments exist. He's not saying that autistic people shouldn't receive treatment, but that treatment should be more about improving the lives of autistic people and less about trying to make autistic people "normal." At the end of the interview, he has this to say:

But the current bias in treatment — which measures progress by how non-autistic a person looks — would be taken away. Instead of trying to make autistic people normal, society should be asking us what we need to be happy.
posted by lexicakes at 8:24 AM on October 12, 2010 [1 favorite]


The question for many of us remains: especially amongst the wide spectrum of autistic behaviors, why were we training kids to appear more typical? Was it because they made others uncomfortable? Because their parents wanted kids who acted "normally?" Just because a kid avoided eye contact and flapped, maybe there was value there in a place where we couldn't see it. And that was the line where many of us got stuck.

As a mom of a kid with mild autism (and as a person who shares many but not all the traits of autism spectrum disorder), I don't necessarily want my kids brain "fixed" - I want him to learn the skills that will let him navigate the world with a little more grace than he would if he didn't have a chance to learn the unspoken rules that the rest of us take for granted. I love his perspective on the world and I wouldn't want to change him into a person he is not.

I understand, however, that I come from a place of privilege in comparison to parents of kids with more profound forms of autism. If he were completely non-verbal and incapable of any form of self care, my perspective would probably be radically different and I would be agitating for a "cure".
posted by echolalia67 at 9:02 AM on October 12, 2010 [1 favorite]


As a mom of a kid with mild autism (and as a person who shares many but not all the traits of autism spectrum disorder), I don't necessarily want my kids brain "fixed" - I want him to learn the skills that will let him navigate the world with a little more grace than he would if he didn't have a chance to learn the unspoken rules that the rest of us take for granted. I love his perspective on the world and I wouldn't want to change him into a person he is not.

And that was our question among the kids who presented as typical but most definitely quirky: what are the unspoken rules? Is it okay to make eye contact once in a conversation? More? What if it causes the kid anxiety, which then causes more extreme behaviors? Is it okay for a 6 year old to run around the perimeter of the playground singing to herself or to hang upside down on the monkey bars all alone? Do we need to force social interaction or is the kid destressing?

This is where the input of those with autism would be very helpful!
posted by dzaz at 9:43 AM on October 12, 2010


Is it okay for a 6 year old to run around the perimeter of the playground singing to herself or to hang upside down on the monkey bars all alone?

This seems like one of those situations where the exact same thing looks different depending on what lens one's looking through. If a child with autism did this, it would apparently be seen as a problem by at least some adults. When I did it as a kid, it was just evidence that I was a bit odd and something of a loner.

This strikes me as a good example of the concern I've heard expressed (not restricted to autism) that once there is a diagnosis, there's a creeping medicalization of everything else in one's life. It can be easy to ascribe almost anything to "that's because I/you have [whatever]", where without a diagnosis it might simply be an aspect of somebody's personality.
posted by Lexica at 9:57 AM on October 12, 2010


The difficult thing is that it's easy to make this black and white. It's true that a child who's perfectly happy singing to herself all day on the edge of the playground doesn't necessarily need 'fixing.' But I know first-hand that "just be happy with yourself" is not always the answer. Sometimes people have mental disorders that really make them unhappy and harm their quality of life.

Maybe this whole concern doesn't really matter, since voluntary medication is pretty much the only kind of medication legally allowed in our society. It's not like someone's going to end up drugged up against their will. Maybe we have to just trust that the people who end up medicated will be those that choose it, while also making room for those who choose not to take medication.
posted by koeselitz at 10:05 AM on October 12, 2010


I should probably mention that I'm the guy who did this interview.

Thanks for posting, scody!
posted by digaman at 2:53 PM on October 12, 2010 [3 favorites]


It's a very good interview, digaman, with nicely incisive questions.
posted by koeselitz at 3:09 PM on October 12, 2010


Pogo_fuzzybutt said:

I just don't see autistic people forming a "culture"

Apparently you've never been to Autreat, an annual retreat organized by and for autistic people. I have. I recommend it.
posted by digaman at 3:10 PM on October 12, 2010 [1 favorite]


Thanks so much, koeselitz!
posted by digaman at 3:11 PM on October 12, 2010




Supposing that a drug that could make people socially adept was invented: the NTs would start taking it to become even more adept (superhuman manipulators), the way students started abusing Ritalin.
posted by bad grammar at 4:59 PM on October 12, 2010 [1 favorite]


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