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If mass sterilization of people carrying certain traits or of certain ethnicities or whatever (before they even get the chance to build a fetus) is considered a potential part of genocide (which it is -- it's an attempt to make sure a certain kind of person doesn't exist, including by preventing people from reproducing), then surely mass coerced abortion is (and actually it is recognized, in the more traditional forms of genocide that are cultural rather than disability-based). This isn't about the personhood of the fetus or all that hair-splitting that goes on in the abortion debate, it's about preventing a certain set of people from existing. (And that's recognized as a potential avenue of genocide, along with the more traditional murder, sterilization, etc.)

Well, it's seems unheard of in autism groups (support groups for and by "autism parents") that autism is a human rights issue or that there may be disagreement about biomed treatments or trademarked therapies. When I introduced your Getting the Truth Out site to another parent, she was really offended and went on a rant about "wanting to help".
The overwhelming belief is that people who "mean well" should be absolved and not taken to task for objectifying disabled people. "I'm only trying to help" is a mantra used by people of all degrees of aggressiveness in controlling autistic people.

When we think of eugenics, we think of Hitler's Germany and the programs he started to persuade the public that euthanasia was okay. We think, in an abstract, philosophical way that it was a contained abomination. We quickly forget that for most of the 20th century, the US had state laws instilling eugenics to prevent "lowlifes" from proliferating. Sterilization seems to be a very common practice for poverty-stricken women, Indians, the mentally ill, the developmentally disabled.
In the '80's I can recall a woman who had a "ret*d" teenage daughter that she had sterilized. She reasoned, "She likes to please people and she wouldn't know any better. It's not her fault." No mention of protecting said person from abusive people or being aware if her daughter were being exploited. As if pregnancy were the worst thing that could happen from being sexually exploited.

It was so matter of fact.

Which reminds me of another story my grandma told me. She met a woman who had a developmentally disabled daughter who fell in love with a boy (who was also disabled like her). The mother was so rapt up in having an overgrown child that she forbade her from marrying this boy. She actually said that it was "gross". "you don't want to do that, sex is dirty"
Now how twisted is that? But again, it's stemmed in perceiving developmentally disabled people in a particular way, as perpetually innocent and unable to have adult interactions.

Genocide takes many forms some of which appear to be in the public interest.

I don't think its fair to go dumping this on poor Adolf, (he's responsible for enough evil already). Some of the biggest supporters of Eugenics were people who we currently look up to... H.G. Wells for one.

The problem is one of perspective...

Considering that, as someone else already said, we've mostly eliminated birth defects causing blindness how would it be if a blind person stood up and said, "but we're needed because blind people contribute X to society" - X could be something useful (eg: realtime military strategy like that guy in the second Stephen Donaldson book).

That's how we probably appear to Autism Speaks. I think the real problem is that there's a major distinction between HFA/AS and LFA. Many of the people on Autism Speaks have LFA kids and can't see why anyone would want to be the way they are.

That's... not actually the distinction. It's what some people want to claim the distinction is. Many parents who don't agree with AS have children who're considered LFA too, and a lot of people don't want anyone to know/believe that because it'd muck up the nice tidy lines they're trying to draw in the sand.

That said, I don't like the "We're valuable and worthwhile because we contribute Certain Thing to society" argument anyway. It suggests that being valuable and worthwhile is like passing a test, that inevitably some people fail just because they can't do what's on the test.

I don't see it as a test exactly;

Aspies can generally live productive lives as can HFA people and probably many LFA's too.

Given that autism is a sliding scale, there's probably a million different degrees before you get to the worst parts of LFA. The permanently institutionalized LFA autistic.

I'm not suggesting that these people are worthless but I am saying that it's a given that many families won't be able to cope with them, they'd become a considerable burden which may destroy the family.

If such a condition was detectable and if families really knew what they were in for, I could understand their need to sterilize and try again. Before everyone tries to kill me, my cousin has a LFA child who is lovely etc and who I wouldn't have wanted terminated. I personally couldn't handle him but God or whoever has seen fit to give my cousin an extra burden because she can.

I have a good friend with a brother who is considerably worse, dangerous and responsible (however unwittingly) for the fragmentation of his family.

I'm a parent on quite a few parent message boards for several years now and these are two topics that are covered incessantly - especially the question of types of therapies/treatments. There is huge controversy over which types of therapies/treatments are good, ethical, necessary.

As for AutismSpeaks message board, I think it was Alex that reminds us here that it's not the AutismSpeaks membership. There is no one way of thinking on that message board - far from it. In fact, that message board has the most contentious and bitter debates I've ever seen among parents. That message board could aptly be called "Nastiness Every Day." And it's mainly parent to parent arguing.

I guess I'm just putting in my perspective on the fact that the issues you mention are of great concern and debate among parents of ASD kids. There is no one pervasive parent attitude on autistic rights and autism therapies. Far from it. I would encourage anyone who is curious to actually go and read the message board, with the caveat to be prepared to get stung if you jump in. Age1600 is accurate in her description of what can happen there.

"I'm not suggesting that these people are worthless but I am saying that it's a given that many families won't be able to cope with them, they'd become a considerable burden which may destroy the family. "

I would say that this perspective illustrates the divide between the Autism Speaks moms and those of us that disagree. Calling a human being a "burden" is exactly the objectification that occurs to treat autistic people as lesser.

Other than the parents forum here at WP, my references are support groups in RL. I'm referring to the unheard of idea (among them) that therapies and biomed treatments are questioned at all. To these people it's unheard of to protest the use of ABA, psych drugs, sedatives, alternative therapies or intensive therapies like SON-Rise. It's not about bickering over which one is better, I'm saying they don't question any of them at all. In fact, there is heavy guilt pressed upon those that "aren't in the know" of all the possible woo avalaible.


Um, that was my point of that paragraph, that I referring to long-standing eugenics programs that actually were in place.

I found the same thing. There's always people I don't like and topics that I don't touch, but that's true for both places . . . it's doubtful that you can change someone's mind about something, but you can offer them personal insight and extra information on things.

A fair number of NTs are IDIOTS also! Should we also tell THEM to not have any kids? Have there been any studies between autistic and NT people to determine which group has the most non productive offspring?

There have actually been forced sterilizations of various groups of people through the world's history . . . I can think of one particular time in the early 20th century where they sterilized people based off of the results of an IQ test. Unfortunately for most of the people sterilized, the test was written by people in a different social class than they were in--in addition to being written in their second language . . .

Aside from the human rights issues, most of the parents of profoundly autistic kids when my daughter was little, bonded over cure treatment presentations. There were no leaders out there, pulling parents together to bond over ideas about better living for our autistic children, looking out for their futures which aren't good.

The cure people make it too easy for the parents to collectively stick their heads in the sand and bond together as dedicated martyrs looking for the cure. And they fall for so much quakery as they celebrate their lives of denial, all collectively jumping on one expensive anecdote bandwagon after another. Then their kids grow up and the bonds are dissolved. The cure parents wind up secluded and not wanting to think about the foster homes where nobody really knows their kids and, among other problems, the medical and dental care isn't good.

I've told the cure people that they need to, for the sake of the kids, pull the parents' heads out of the sand once in while and see that their kids are growing up. They don't want to do that. Why? Because they don't care about the quality of life of the failed cures?

If there were a cure for my daughter and if she took it, she'd becom fully NT, I'd let her have the cure. Why? Because I'm going to die someday. Who will be there for her after I'm dead?

The kids didn't ask to be born. It was the parents' choices. The parents have no moral right to only accept a cured kid. They have no right to turn a blind eye to the kid who needs them NOW..

Who is Speaking at Autism Speaks? topic

I am still not sure what the parents of children living on the Autism Spectrum want to cure. Is it the behaviours that (is said to) run the parents around the bend? Is it the actual challenges, like the co-ordination issues I live with? The social interaction differences? I think someone said it best when stating the problem is with curing a wiring issue, and how it could be done.

And what about eugenics? How would such a test work to select for NT if there are many factors involved in the creation of a person living on the Autism Spectrum? The test would be long and involved. Some might not want to wait before deciding.

As for abortion, women have that choice. All women. Even those living on the Autism Spectrum.

If there ever is a cure, there should still be a choice. In the marketplace of ideas, there are always choices, and some work better than others.

Keep posting. I need to know the ideas.

I don't think there's such a thing as a life that isn't "productive", at least not in the sense you're talking about.



See, this is where we start really disagreeing.

One, autism isn't a sliding scale. It's a many-dimensional thing.

Two, I know enough about institutions to know that you're saying something that's based on a serious (and problematic) misconception about how they work. A common one, but one that needs to be challenged every time it comes up.

That's to say, there is no such thing as a kind of person that can be determined by where they live. (Aside from the fact that institutionalizing someone is a good way to make sure they don't do a lot of things, and that Kanner himself noticed that institutionalizing someone was a good way to make sure they'd never learn a whole lot of important things. This has later been confirmed by science.) You've got it backwards: How much you've learned doesn't create an institution around you, but an institution will definitely affect what you're able to learn, and people who live in institutions, even with all other traits equal to people outside of them, learn less. You could put a "normal" person in an institution and they would become far less able to function in the outside world.

But there's something else about this: Who is and is not institutionalized isn't about what they can and cannot do. It's about what sort of supports are available (or purport to be available) in what sort of living arrangement. Temple Grandin would've been permanently institutionalized if her mother wasn't determined to keep her home. And there are lots of people living outside of institutions who by your standards are "lower functioning" than a lot of the people living inside them. It's about both what's available and what parents want to do. It's not about "functioning level". I was supposed to be permanently institutionalized and taken away from my parents' custody. This wasn't because someone was mistaken about what I would and would not be able to do, it was because of differences in attitude about what you do to certain kinds of people. My parents fought the system and kept me only temporarily institutionalized instead of permanently (but they lost a lot of things in that fight, and some parents wouldn't have managed).

Basically, those who live in institutions and those who don't are not differentiated as much by their abilities as by the support available in the area, which usually has to do with what support has been fought for by parents and disabled people, not with what support is necessary for the people who get thrown in those places. There is nothing good that goes on in an institution that cannot go on outside one. There is a lot bad that goes on in institutions. Therefore, even the continuance of institutions and the lack of support for people outside of them is a human rights violation and ought not to be cited to describe the abilities of people within them. As a woman who started exploring the situations of developmentally disabled people in general in California noted, "The population inside and outside of California's state institutions are identical." Most people who've never or barely actually seen the inside of an institution tend to be very ignorant about who lives in them and why the ones who do live in them might act how they act.

To give an example in the physical disability realm, I have been inside a lot of nursing homes. This is because my mother worked in them. I met people in them who were far less severely disabled than people I've known outside of them. For instance, one woman who had a stroke in her forties and had some minor motor problems. Whereas there are people who are either completely paralyzed or completely unable to speak who live outside of institutions, as well as people with severe behavior problems, etc. The populations in and out really are identical from what I've seen, it's what's offered to people and what's available and what they know is available that makes the difference.

So please never cite those places as an indicator of anything about people in them, it's really... ignoring the extreme human rights violations that the places represent merely by existing (when it's proven that other living arrangements are both better and cheaper).



(Note that the following paragraph is sarcasm.)

Because of course dealing with families that consider us a burden is not a burden on us, never, not at all, it's just us who are always a burden on our families. Interdependence doesn't exist, just independent people and dependent people. And dependent people are the only ones who are burdens. Independent people are never burdens on dependent people, could never happen.

Give me a break.



I'm not going to "try to kill you" (interesting choice of words, given that I did have people literally try to kill me as an unwanted burden and said so in as many words -- not my family, but people who worked in a mental institution), but that thing about your cousin sounds like "I'm not racist, my best friends are black. Really. So don't call me on my racism." Don't expect not to be called on your ableism for claiming that the existence of disabled people (rather than the non-existence of proper support and/or prejudice that exists about us) is what rips apart our families. I know a lot of the stories of what families who are supposedly "ripped apart" by us have to deal with. A lot of them have to deal with far less than my family had to deal with, and somehow mysteriously my family is still together.

What would've ripped apart our family, had it happened, were the constant accusations of my mother causing my symptoms by her parenting methods (yep that still existed in the nineties), and the insurance company threatening to take me away from the family altogether and have me declared a ward of the state. Meanwhile I was bouncing in and out of institutions due to behavior that is far more "violent" than a lot of the people I've heard of who supposedly do rip apart their families merely by existing. Give me a break. It's the system that tried to rip our family apart, not my existence, and my family sees fit not to call me a burden and not to act like they're God's special parents chosen for God's special children or some crap like that.

It's not because my parents are especially stable, or especially patient, or especially great at what they do. All they are is coming from a different cultural philosophy (one that stresses that family means everyone in the family helps everyone else in it and that nobody in particular is a burden merely for existing -- as in, a philosophy of interdependence rather than one of all these "independent" people being burdened by a "dependent" person) than most of the people who will insist that we rip apart our families. Who tend to come from a far more self-centered and less community-centered cultural philosophy, from our perspective. Where people think they have a right to certain kinds of relatives, and to do with them what they please if they don't measure up. We could be unable to stand each other but we would still have a sense of duty to each other, and enough sense not to regard each other as burdens just because they like everyone else need support.

I've definitely been the sort of person who gets regarded as a burden, but somehow I never heard that word from my family, nor have I heard that word within my family to describe other people. And people who assist disabled relatives are not elevated to some saintly role, either (which is a recipe for believing that only a saintly person could do it, therefore it's perfectly understandable if someone "snaps" and calls a person a burden, etc).

I always wonder, with all this emphasis that exists on "caregivers" burning out and such, why there's never any attention to the fact that sometimes the "caregivers" that disabled people are stuck with really suck and really burn us out, but somehow unlike "caregivers" there's no escaping them, for us. Yet it's somehow the "caregivers" who sacrifice more. I really don't buy it, not while having been on both sides of it. When I assist someone who's disabled with stuff most people don't need assistance with (which I do in fact do sometimes), I'm always well aware I have a certain power over them because I could stop and leave at any time and be just fine, and they can't do that. That's why we need more acknowledgment of human interdependence instead of this constant emphasis on who's "dependent" and who's not.

Humans in general cannot survive without each other's help, we are a social species (whether some people choose to acknowledge it or not), and we have no right to blame other people for needing our help, because all of us need all of each other's help all the time. If one person is not capable of doing something for one other person, that is fine, but the second person is not to blame for the first person's inability to do it, any more than the first person is to blame for not being able to do it. But if the first person starts developing and spreading a negative attitude (like "that's a burden and I'm not") towards people like the second person because the first person isn't able to help them, well that's a serious problem, and if that attitude goes unchecked then it is a danger to all people who are like the second person. When one person can't help another it's not the other person's fault, it's just the fact that the first person can't do it. And people should acknowledge they can't do certain things without saying then that only exceptional people could possibly do it, or that the people who required their help are to blame for their inability to provide it, or for any social repercussions of their inability to provide it.

And I've been a "caregiver" and a "severely disabled person" and a "relative of severely disabled people" and a whole lot of other things, so don't for a minute think this is lack of experience talking. It's just a different (and, I think healthier) perspective on who disabled people are and what people's responsibility towards each other is.

I wrote a blog entry called What people are "supposed to" be doing that summed this up in a far more coherent way.

I'm happy to agree with that, I usually say that but for the purposes of discussion/understanding I simplified it. Regardless of how it's actually arrived at there's a point at which the affected person cannot function safely (for themselves or others) unassisted in society. Some people can look after them - I salute those people because they have greater strength and more patience than I will ever have.

I think most people have seen the video Alex directed us to about the mother who wanted to put her daughter in the car and drive off a bridge. If you feel like that, then it's obviously time to give the child up. Separately mother and daughter could both have a better quality of life - together they cant.



I'm not judging who should and who shouldn't be in an institution. I'm not qualified to. I'm also not necessarily referring to straightjacket institutions - there must be some sort of in-between thing.

If a life is in danger, then appropriate steps should be taken to protect it (assuming that it wants protecting).

I'm also not suggesting that institutions aren't harmful - they obviously are - but it does depend on the alternatives.



I wasn't aware that I had. I was referring to a specific case of the brother of a friend of mine.



Obviously both of your parents felt that they could cope with you. Good on them. I can't see a reason to remove a child (other than obvious abuse) from parents if both the child and the parents want to be together. All the while, I've been citing parents who just can't cope.


I'm not going to call you out on lack of experience but as a father of two affected boys I know that they often get out of hand. I'd never institutionalize them, they're mine and I can cope - for now - but I will point out that sometimes, under the right sorts of strain, even the best of parents need assistance and a break. Similarly, the boys need a break from their parents.

I read your blog entry with interest - it's very enlightening.

In a perfect world, it would be great - sadly I'm a bit of a realist.

I'm a realist too. The blog entry I described was not about some fantasy of a perfect world, but about aspects of the real world that I have watched directly (I never understand why people think that my family is somehow utopian, maybe because they have never met us?!). I think I was pretty clear on that, and also clear about the fact that I had many of the same experiences as other people but think differently about them.

In about ten minutes I'm going to go do something for a friend of mine. She happens to be severely physically disabled, and she happens to be unable to do the thing I'm about to do for her, because of the way her body works. I am also severely physically disabled. The thing I am doing for her causes me severe pain because it often leads to something pressing on a nerve in my neck when I do the thing I need to do for her. But she doesn't have any support staff at this time of night, and she could die or end up in the hospital on a ton of dangerous but potentially life-saving drugs without this being done regularly (this has already happened to her before). Additionally, she's autistic and can have pretty spectacular meltdowns (last time I was in there she was screaming at the top of her lungs, not at me, just at the world in general, and she's really loud and can end up screaming what appear at first glance to be extreme insults at people who haven't done anything to her -- she doesn't actually mean the insults, but most people wouldn't know that on first glance).

There are totally able-bodied people who put their family members in institutions because they supposedly can't handle doing this sort of thing, or even less, for them. Whereas I do it (and other things) even though I'm not able-bodied, even though it takes me hours to do it sometimes (it takes about half an hour or even less for an able-bodied person), even though it probably does me some amount of physical damage to do it, even though I'm neither her family nor her significant other, and even though I'm far more sound-sensitive than most people as well as more sensitive to (even seeming) insults.

And, while I now don't have enough time to write about it, she's done the same and then some for me, even though all of the above is true and I've done worse to her than scream insults occasionally (she's in fact the person who taught me what no professional could teach me when it came to avoiding violence, because she'd been through the same things herself). And I've done other things for her that are exactly the sort of things that a lot of parents who are far more capable of most things than I am, complain endlessly about doing for their kids (and likewise in the other direction). We're not "repaying" each other or keeping some sort of tally though, we both do these things because the other person needs them and nobody else seems either able or willing to do it.

I do live in the real world. I just wonder why a lot of other far more capable people choose to avoid doing these things even though we do these things for each other with far fewer actual abilities between us to do them safely. Oh, and we don't blame each other when our own bodies (or minds) give out on us. Strange thing, that, and apparently not in the real world at all even though it's true. We're not exactly spectacularly good at "coping" by most standards, either, we're both living on government assistance because we can't even keep regular jobs, we both get a good deal of assistance with everyday tasks that most people can do and then some, and I don't think either of us is really all that saintly when it comes to personality traits (at least I know I'm sure not).

And I've noticed a lot of this in parts of the autistic/disability/etc communities, a willingness to take care of each other when nobody else will and when the person being assisted isn't always the easiest person to assist/live with/whatever. And a tendency not to blame the other person when our ability to do whatever it is gives out. So what on earth is it when all these people with far less, and no apparent increase in general easy personalities, will willingly do things that lots of people with far more won't? And why are we considered so unrealistic when we ask other people to do with all they have, what we can and do end up doing with nearly nothing without blaming each other when we do run out of ability to do it? (Don't get me wrong, I'm not trying to canonize people with nearly nothing, that'd be a major mistake, I'm just baffled at the contrast here.)