Temple Grandin devalues us again, in print this time.

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This is an unfortunate addition to my previous post, Temple Grandin, displaying near-textbook “HFA/AS elitism”. Because I have obtained Temple Grandin’s expanded tenth-anniversary edition of Thinking in Pictures. Here are some quotes.

Page 56:

There is concern among people with Asperger’s that genetic testing could eliminate them. This would be a terrible price to pay. Many gifted and talented people could be wiped out. A little bit of autism genetics may provide an advantage though too much creates a low-functioning, non-verbal individual. The development of genetic tests for autism will be extremely controversial.

Page 122:

Many individuals with high-functioning autism or Asperger’s feel that autism is a normal part of human diversity. Roy, a high-functioning autistic, was quoted in New Scientist, “I feel stabbed when it comes to curing or treating autism. It’s like society does not need me.” There are numerous interest groups run by people on the autism/Asperger spectrum and many of them are upset about attempts to eliminate autism. A little bit of the autism trait provides advantages but too much creates a low-functioning individual who can not live independently. The paradox is that milder forms of autism and Asperger’s are part of human diversity but severe autism is a great disability. There is no black-and-white dividing line between an eccentric brilliant scientist and Asperger’s.

In an ideal world the scientist should find a method to prevent the most severe forms of autism but allow the milder forms to survive. After all, the really social people did not invent the first stone spear. It was probably invented by an Aspie who chipped away at rocks while the other people socialized around the campfire. Without autism traits we might still be living in caves.

I don’t quite know where to begin with this. It’s not just autistic people who can be good inventors, and I’ll leave that part at that.

The really problematic part is, yet again, her view that so-called low-functioning non-independent non-verbal autistics are useless. If Temple Grandin reads this blog (and I sure wish she would read and understand Donna Williams’s and my responses to her anti-”LFA” sentiments), I hope she knows that she is essentially telling me that the world would be better off without me in it.

She draws a distinction between natural human variation and disability. It’s the usual stereotype, “natural variation good, disability bad”.

Well anyone who believes that, wake up! What you call disability is part of natural human variation and always has been. People with easily-recognized l33t Asp1e sk1llz, or whatever they are called these days, are not the only people of value on this planet, and the rest of us care just as much about impending genocide as you do. Don’t think that, if all us undesirable useless retards were all magically eliminated, you wouldn’t be next. The standards for normalcy only tighten when certain people are eliminated, and you would find yourselves in the position we now occupy. Even if you still want to throw us overboard to save yourselves, many of us will fight you on that.

(For anyone who has mischaracterized me as “angry” in the past, I really am angry while writing this post. But I tend to think that being told that you have no value in the world, especially by people in power, is enough to piss anyone off. Being pissed off in situations where it’s natural to be pissed off, doesn’t mean I walk around pissed off all the time. And the fact that I’m mad right now, doesn’t mean I’m wrong.)

Anya Souza is one of my heroes. No, not because she’s “overcome disability” or any of that fake-heroic crap. It’s because of the more traditional definition of hero, a person who puts themselves out there to fight for what is right. The article I Am A Person, Not a Disease describes her fight to stop the prenatal eugenocide of people with Down’s syndrome, which she herself has. I’m not sure Temple Grandin would come up with a lot of “uses” for Down’s syndrome, but Anya Souza seems clear that it’s a part of natural human variation.

Before anyone tells me that Anya Souza is high-functioning for someone with Down’s syndrome, let me tell you about David. I was locked up with David. He had Down’s syndrome and, like a disproportionate number of people with Down’s syndrome, he was also autistic. He made one sound over and over again, and was regarded as “not being in there”. But everyone but some of the staff valued him for who he was. To us, he was another person, a real person, not a mistake or a defect. To some of us, he was a friend. The problem was not that he was autistic, not that he had Down’s syndrome, and not that he was classified as low-functioning, but that he was born into a world where these things are not considered compatible with full personhood.

Let me be clear: When I talk about neurodiversity, I mean all neurodiversity. Not just the people that Temple Grandin happens to find worth in. I am fighting for a world in which there is a place for every single one of us and our value is not even questioned. I know it’s a long way off, but it’s way better than fighting for a world from the standpoint of, as Cal Montgomery puts it, “a legacy…of exclusion rather than inclusion, hierarchy rather than egalitarianism, and an imagination that was meant to open the world to certain kinds of people and then slam shut forever.

I honestly think Temple Grandin owes an apology to the many, many autistics she has used her position as the most famous autistic person on the planet to devalue. But more than an apology, she owes us a serious attitude change. Not, mind you, just because of our “feelings”: It’s our very existence she could help eliminate in the future.

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45 responses »

  1. The paradox is that milder forms of autism and Asperger’s are part of human diversity but severe autism is a great disability. There is no black-and-white dividing line between an eccentric brilliant scientist and Asperger’s.

    She obviously understands that the boundary between autism and NT is subjective. And yet does
    not seem to understand the same is true of the boundary between high-functioning and
    low-functioning:


    In an ideal world the scientist should find a method to prevent the most severe forms of autism but allow the milder forms to survive.

    It is unclear by what objective criteria, if any, she would divide the spectrum. Also,
    I’m of the opinion that a genetic test will never be able to predict functioning level
    accurately. So even leaving aside tolerence considerations, Temple Grandin’s opinion
    is not scientifically sound.

  2. Also, wasn’t Temple Grandin diagnosed as having brain damage
    as a child? I wonder if her parents had kept her if a pre-natal
    genetic test had predicted this diagnosis.

    It’s really unfortunate that there are pro-eugenics autistics.

    (There seems to be a problem with your reply text box. It’s
    very wide and does not wrap).

  3. I can only wonder what her ultimate selection criteria would be. As Joseph says, the line is an extraordinarily subjective one. What if I lose skills at some point in the future– will this subject me to Grandin’s survival-of-the-fittest criteria, or put me on the wrong side of the Good Autistic/Bad Autistic line even if I had passed muster before?

    And is it just people who can recompensate the dominant culture for its discomfort towards us with their genius invention skills who are acceptable? Due to the fact that I had no ‘delay’ (who decides what’s normal timing for these things, anyway?) in learning to speak, I cannot be given any diagnosis besides “Asperger’s syndrome.” Yet I hardly fit the stereotype of the hyperachieving genius aspie who breezes through several Ph.Ds. I can’t perform at an ‘average’ level in school without significant assistance, I don’t know how well I can live independently, and I will never be Einstein, Bill Gates, or any of the other current Aspie Role Models who make Great Contributions To Humanity with their Unique Form of Genius. I do not mean to say by this that I think myself incapable of contributing anything significant; I believe I can, and I hope to be able to do so, after my own fashion, but by her line of thinking, I suppose that could be easily dismissed by pointing to the Next Aspie Over who can do the same kinds of things as me and do them more often and with less assistance.

    However, even if they can do the same kinds of things that I can, they can’t replicate what I do. My contributions to the world are valid not based on my presumed level of intelligence, my presumed level of functionality, the amount of assistance I need, or because I speak from “a female perspective” or “an autistic perspective” or anything else, but because they are mine, not others’, and no one else can contribute exactly the same things that I can.

    Has Grandin ever been called publically on her eugenics cheerleading? I wonder if perhaps something along the lines of “Our Names Are Autism Too” might be in order here.

  4. I was thinking something similar, re: “Our Names Are Autism Too”. We need to have some kind of organized response to this.

    Regarding the reply box, is anyone here familiar enough with HTML and with their particular browsers to tell me what’s amiss in the HTML? I can edit the HTML, but I can’t figure out where the problem is.

  5. The textarea tag has these attributes: style=”width:98%” cols=”100%” rows=”10″ tabindex=”4″
    If you can change that, I’d remove the style, and just define cols as 80 or something.

  6. Well, to start with, IMHO the world is better off with you in it. I’ve spent ‘way too many enjoyable hours reading your stuff on A.S.A and learned a lot from doing so. You pointed out some true things I would prolly not have noticed on my own.

    Next; Even back when I thought I was just “normal, but gifted&flakey” I knew I was not neurotypical. I have asymmetrical myopia and cross-dominance in my visual system, and reading any old Brittanica will apprise you that those qualities sometimes go with other sorts of “brain cooties”, (as the rettdevil puts it).

    And then there are the transsexuals. It’s perfectly possible to have a female brain in a male body, with male sexuality. Ask Zoe Brain.

    I think Jerry Newport said something about Professor Grandin having dodged a bullet; that is, had her parents not been filthy rich and able to afford the best of care for her, she might have languished to death in a back ward in a State Hospital.

  7. I think it is a form of cowardice. “I couldn’t live like that therefore I will deny other people the right to live like that because their lives challenge me and make me feel distressed.” I am a bit like that myself, but I recognize it as my weakness and would never dream of trying to impose it on others or justify it. It is my secret shame. Only it isn’t a secret now. But it is still a shame.

  8. re: what mike said.

    Yeah.

    Something Hingsburger once said was “Please, please, please don’t delude yourself into thinking that you don’t harbour anti-disability sentiments inside your heart. Please don’t say, “but my child…” “but my best friend is…” or even “but I’m…” We everyone of us is prejudiced against those who are different. Awareness is the first step. Pity, sympathy, compassion are often words we use to disguise distaste, dislike and disenchantment. … There can be no compassion without hierarchy. And whenever there is a hierarchy we scramble to the top.” (from the constantly-recommended-by-me First Contact, which is about confronting the exact kind of prejudice involved in the discussion we’re having)
    I think all people have negative prejudices of one kind or another, the question is, do we fight them, or do we pretend they’re okay.

  9. Blech. Just….blech.

    The paradox is that milder forms of autism and Asperger’s are part of human diversity but severe autism is a great disability.

    As you and Joseph pointed out, disabilities are part of human diversity.

    It amazes me how many people think “disability” is a four-letter word. “I don’t have a learning disability,” some people will say. “I have a learning difference!” It’s a euphemism that validates the prejudices people think it combats. Not only does it imply that all people without learning disabilities learn alike, but it makes “disability” into the disabled person’s (psychological) problem.

    If I tell people that I have a disability, many respond like this: “But you can this, this and this” or, “A lot of people with disabilities are geniuses.” One person didn’t want to hear about my disability, and implied that I was indulging in something self-pitying and negative by bringing it up.

    Political correctness is just a way of moving our prejudices around so that we don’t feel so bad about having them.

  10. *big heaving sigh*

    You’d think she’d know better.

    Maybe the NTs who hire her have her trained to do this without thinking about it. Parrotting is something we’re known for, after all.

    I want an apology and attitude change too. We can’t change the neurotypical attitude if those in our community who are prominant display the same attitudes.

    Argh.

  11. I often feel that I dodged a bullet too, in the sense that if my parents had had better insurance (and if my mother hadn’t been so averse to letting anyone label her children autistic), I could easily have ended up institutionalized. The difference is that I’m not in denial about the fact that this could have happened– I don’t claim that there’s a huge difference between myself and autistics who end up in institutions, or that it only happens to “that other kind.”

    I saw some of this attitude going around, in a different context, after Hurricane Katrina: that the people who didn’t leave the city were “stupid” and therefore “deserved everything that happened to them,” and that evacuating the city without a vehicle would have been “easy.” I think, to some degree, it’s a way that people have of putting distance between themselves and the people whose fates they don’t want to imagine as a possibility for themselves. They say “That could never happen to me.” They say, “If it had been me, I would have been smart and escaped– they were only trapped because they were stupid.”

    I have sometimes suspected that something like this underlies some of the zeal of certain ‘high functioners’ to differentiate themselves from the ‘low functioners.’ Or they’re basically saying to the dominant culture “look, look, you can have all these others, I agree with you that they’re useless- just don’t take me, I’m different from them!”

  12. I also dodged a bullet (or more), although it wasn’t institutionalization. Well, there were the attempted murders, but those were neither bullets nor what I was thinking of. It was guardianship.

    I think my parents could’ve made a plausible case for guardianship when I was first becoming an adult. I’ve known adults under guardianship who have way more life skills than I do, and I’ve seen parents saying that they want their adult children (who, again, often have way more life skills than I do) put under guardianship. For whatever reason, possibly respect for me, my parents didn’t do that.

    I also managed to get out of institutions through some weird combinations of privilege (including some weird reversals of how privilege would be thought to work) and luck. It would have been just as easy to keep me indefinitely, to not allow me to live in my own place (in fact I had several professionals working to keep me from living in my own place, and had my parents listened to them, I would not have been able to do so), and so forth.

    So, yeah, several dodged bullets there, but institutionalization was not dodged.

    I agree, that institutions do not contain a different sort of disabled people than the people on the outside. It’s really hard, though, to get that across to people who have “kind of institution” and “functioning level” so wedded in their heads that they don’t seem to really look at who’s in there and who’s out here.

    Unfortunately, I also see a trend in thinking that the kind of behavior caused by institutions, is in fact the reason people are in institutions. I’ve heard people say that “Well, it couldn’t have been caused by the institution, because he wasn’t there when it started.”

    And I remember how most of my “behavior” that led up to institutionalization was heavily influenced by the fact that institutions existed and that I was terrified of them and of what I realized about who I was and what they were and so forth. And I think “Well, I had ‘behavior problems caused by institutions’ before ever getting put in one.”

    Ergh… and try explaining that one most days, to people who don’t think that certain kinds of people can think well enough to be afraid for their futures.

  13. Oh, and just remembered another thing people sometimes say in these contexts: “Oh I don’t mean you.”

    So… that makes it okay? If you don’t mean me, it makes saying this about other people okay?

    Ergh again.

  14. Certainly, an attitude change is in order. I don’t know to what extent Temple Grandin uses the Internet or how much she reads about autism from other autistic persons as opposed to supposed “experts”. It seems as if perhaps she has become someone who ends up in the situations discussed in the previous blog entry here — someone who becomes a fountain of “answers” for flocks of curious and concerned parents. I don’t think she necessarily “knew what she was getting into” by telling her story, but I do think that she must be aware of the position she is in, and the weight her words carry due to how well-known she is. And ballastexistenz (and others who have commented) are right to give her the respect (yes, respect) of holding her accountable for her words.

    I don’t think Grandin is a hopeless case in terms of having the potential to change how she thinks, speaks, and writes about people she considers “lower functioning” than she is — she just needs some things pointed out to her. The question is: how do we (“we” being autistic people, “we” who cannot be classified according to someone else’s idea of what “functioning” is) point these things out? Do we hope she reads certain web pages? Do we send e-mail or write letters?

    I would like to see her directly address the question of what sort of society she’d like to live in: one in which each person has to “prove” their financial worth and social usefulness according to some arbitrary (and often transient) standard, or one in which it is understood that without true diversity of brainwiring and body-configuration, there is really no such thing as civilization.

  15. It is interesting to look at Temple Grandin’s class background – that she came from a rich family in, I believe, the midwest. So her views would reflect that. The fact is, that determining the moral worth of individuals is very much a capitalist view of things. After all, to the capitalist class, individuals are a resource to be exploited in making and selling goods and services to make profit. So if a person can’t do that, or at least not without lots of expensive ‘support’, then from a capitalist point of view they are useless and therefore worthless. Of course, as the capitalist class control society, their world view is that of society.

  16. Actually Grandin comes from the East Coast of America. Winscosin, I think she was born in. And then she grew up taking holidays in Cape Code. She went to school in New Hampshire for primary and high school, and then spent her career in the midwest from about 1971, I think. Her mother, Eustacia Cutler, is very old money New England, and I don’t know her father’s background, except he’s fairly irascible.

    Grandin now lives in Colorado: Fort Collins. And she spent time in Arizona during her masters’.

    This is all from her autobiography, Emergence Labelled Autistic.

    What was she doing all that time between 1975 and 1985?

    Have any of you read A Thorn in My Pocket by Eustacia Cutler? This explains a bit more about the Grandin family background.

  17. Argh… I’m going to get myself into deep oafish doo-doo here. But I’m going to say that money does come into it.

    I’m 41 and NT. Well, not exactly NT but not on the autistic spectrum either.

    I always wanted children, but by my early thirties decided not to. Part of it was not being in a financial or social position to be the kind of parent I would have wanted to be. (Generally, to any child.) Part of it was not wanting to have a disabled child *who I would not be able to support adequately.* The issue for me was *not* that a disabled child would have been any less worthy. The issue was that a child, any child, deserves all the support they need to live the fullest lives they can. And I didn’t want to put myself in the position of having a child whose needs I could not meet.

    My concerns could not have been addressed through genetic testing, no matter how thorough. What if I had a child who became quadriplegic following an accident? Or suffered brain damage following an infection and fever?

    If I were wealthy I wouldn’t have had the same concerns. I could have provided for a disabled child throughout their lifetime if that had been necessary. (No, I’m not assuming it *would* have been necessary. Just that it might have been.) But I’m not wealthy. All I have to offer is myself, and when I’m old and infirm, and when I’m dead, “myself” isn’t going to be enough. So I never had kids.

    Yes, I know there’s a “system” out there to provide for the needs of disabled adults. But I’ve had just enough contact with it myself to not want any child of mine to have to be dependent on it if they aren’t finding it helpful. And I just have never been in a position to guarantee that they wouldn’t be.

    I apologise if this comes off as smug or patronising or even hateful. But these were important concerns for me precisely *because* I think everyone is worthy.

    So no, I don’t have kids, and I don’t miss people who never existed. But I treat the real, living, important disabled adults in my life with as much respect as I know how.

  18. Amanda – I’m sure there are poor people who think like she does. Nonetheless in the same way as working class people are more likely to vote left in elections, and the rich vote for the right, people from different class backgrounds are more likely to hold different views. The perspective they hold on the world reflects their position within society.

  19. Yes, class can influence opinion, but it can influence it in multiple ways.

    For instance, as someone else has pointed out, some poor families might say “We can’t afford to support disabled family members unless they can work.” And some rich families might say “We can definitely afford to support disabled family members even if they can’t work.”

    I just read a book by someone whose old-money family wasn’t willing to pay (until forced) even minor amounts of their income for keeping their disabled daughter in an institution (which they did, for most of her life) because it would supposedly “make their preferred lifestyle impossible” to have to pay even $80 a month, and having her around would also supposedly “make their preferred lifestyle impossible”.  And I have known poorer families that have given up everything they have to keep their children at home.
    There’s more than one direction, or even two, that these attitudes can go in, based on class, so it’s not that simple to say that one will think one way and one will think another.

  20. All very true, and it is of course far too simplistic to state that only rich conservatives share the prejudices of Temple Grandin and her ilk. I wasn’t actually stating that. My point, I think, is a more general one, which is that discrimination against disabled people is a systematic thing, rather than just the result of ignorant assumptions on the part of certain individuals, and also that this discrimination acts in the best interests of the capitalist system. After all, this system is based on profit before people, and disabled people are much more difficult to exploit for profit. I also think that, given Grandin’s background, she would be more likely to have a capitalistic mentality and this would probably influence her views on autism.

  21. That makes sense. I also think that when people are seen the way people are under a basic capitalistic structure, then disabled people are bound to be devalued. (Not that I know what to replace it with, exactly, but I do know what I’m looking at can’t be it.)

  22. Money comes into it (as I explained above for myself) but so does life experience. Sometimes people who have had it very rough don’t see why they should make any particular effort to spare others — life sucks, that’s just the way it is.

    Way back in the eighties when the cause of the moment was drug-addicted babies and their irresponsible mothers we heard this point of view a lot. “OK, so my drug habit is going to mean that the kid will probably be born with multiple handicaps. It’s not like anyone was looking out for me when I was born into poverty, or when my stepfather raped me, or when my mother walked out on me and I had to fend for myself as a young teenager. The kid’s going to be fine.” (Of course the reporters who were reporting this point of view were scandalised and got very excited discussing the ethics of imprisoning pregnant women so they could be controlled and not damage their innocent fetuses.)

    In contrast, people who have always lived protected lives may assume that pain and suffering and inadequacy are and should be completely avoidable. (No, I don’t think being autistic is about pain and suffering. But being an NT parent of an autistic child is often about feelings of inadequacy, among other things.) That a life that is not lived easily and productively is somehow a mistake, rather than the natural order of things.

    Other people who have had tough lives want to do everything they can to make sure their kids will have it better and be well-equipped to deal with what life is sure to throw at them, but aren’t particularly shocked or dismayed when one of their kids is disabled. Life is tough for everyone, and for some people it’s tougher. You roll up your sleeves and get on with it.

    The first attitude could be considered denial, or otherwise problematic, but it can also be interpreted as accepting of disability.

    The second attitude is clearly obnoxious.

    I think what we’re all striving for is the third.

  23. Well, I would like to think that there is far too much suffering in the world, and that it can be reduced. I’ve never been a believer in the ‘life is hard, and that’s it’ school of thought. It *shouldn’t* be that hard and it’s really a reflection of the way the world is run that it is for so many people.
    By the way, Amanda, I have a pretty good idea of what I’d like to replace capitalism with. I’d just like to say that Lenin’s “The State and Revolution” was one of the most inspiring books I have ever read.

  24. Did you know the word teratogen comes for terato, meaning monster, and gen, short for genesis? Medically, a teratogen is a chemical, illness or whatever that causes a disability in those exposed to it before birth. Examples include alcohol, thalidomide and rubella.
    Personally I think a big part of the issue with crack babies and FAS people is drugphobia, just like wild claims about marijuana affecting sperm that turned out false. But the fact that FAS people and crack babies have been viewed as disabled is important too, and also applies to thalidomide-affected people and Fetal Rubella Syndrome. I remember reading about a “wrongful life” case where doctors failed to diagnose rubella accurately, and had the mother known she had rubella during that pregnancy she’d have aborted.

  25. It seems as if perhaps she has become someone who ends up in the situations discussed in the previous blog entry here — someone who becomes a fountain of “answers” for flocks of curious and concerned parents. I don’t think she necessarily “knew what she was getting into” by telling her story, but I do think that she must be aware of the position she is in, and the weight her words carry due to how well-known she is.

  26. Awareness of the weight of one’s words in the public world is certainly something it took this bumbling autie to progressively learn. But much of the nature of those words comes down to one’s personality – one either deeply values other humans’ equality and has a passionate need for acceptance of a diverse society or one has other emotional needs that are ‘higher’ than this.

    Some personalities seek to gain professional recognition, claiming their view as scientific. Others are OK with it merely being opinion, philosophy. Some are driven by the need to achieve and gain admiration, others just ‘do’ regardless of whether it achieves or not and perhaps happen to achieve something, to their own surprise.

    Some need the admiration, others perhaps feel sad about an unequal world and only striving to equalise that world lessens that sadness.

    So people come from very different values as personality collectives regardless of their diagnosis.

    Temple has proclaimed ‘all autistics need higher levels of stimulation’, that ‘facilitated communication is a hoax’, that ‘all autistics think in pictures’ (and must be taught visually), that autistics and all animals think in the same way, and now that its ok for HFAs to exist but those not so able should progressively be eradicated from society.

    After what was sometimes years of addressing each of these sweeping proclamations and OPINIONS, Temple would alter her public statements to accommodate legitimate criticisms.

    The real question is why she doesn’t first starkly question her assumptions before feeling so self assured that they ‘surely’ apply ‘out there’ and how those who publish these things don’t strongly question it.

    If Temple’s title of ‘Dr’ and ‘scientist’ leads people to WRONGLY presume she is a psychologist or childhood development specialist as opposed to being an engineer with PHd in animal handling (animal husbandry, meat slaughter management etc) within agricultural sciences, then this may be where this presumption of ‘right’ begins.

    The question is why someone without an APPROPRIATE or RELATED qualification would presume their opinion about others is a SCIENTIFIC one rather than a layperson’s philosophical view or presumption, is where the question really lays.

    It is one thing to write about oneself, but it is another to project these things onto all people with a related diagnosis. Even if one has vast experience in professional interactive, face-to-face in-depth practice with hundreds of people on the spectrum of all ages, situations, cultures, genders, and even then, one should have enough experience to question oneself deeply that there will always be exceptions.

    Temple has not worked in depth with vast numbers of people on the spectrum in that capacity, does not have a qualification as psychologist, primary school teacher, OT, Speech Therapist etc through which she’d have been employed in those roles.

    What she does have is experience lecturing on the autism circuit and experience taking audience questions and experience chatting with people on the spectrum through forums and conferences and at opening events.

    This is not at all the same and this isn’t the first time I’ve seen someone with a PhD in a completely unrelated field, allow the public to presume them as ‘Dr’ complete with assuming they have RELEVANT qualification and expertise to claim or allow the public to believe their OPINION is a professional or scientific one rather than a personal one made by someone who happens to also have a PhD in an unrelated and irrelevant field.

    Temple is a person of facts. She claims she has no unconscious (I suspect an EEG would show otherwise as even those who don’t remember dreaming do actually dream) so perhaps expecting her to concern her scientific self with feelings isn’t speaking her language. If you point out invalidity of facts and invalidity of assumed professional capacity to proclaim anything more than personal opinion in relation to others with autism, this is a logical argument and being factually ‘wrong’ is something Temple would quickly seek to rectify in her public presentations.

    Finding people with autism ‘interesting’ is not a good enough reason to spend one’s life talking about them. Sharing a spectrum isn’t a good enough reason to assume one has an unquestionable right to proclaim sweeping personal opinions as professional facts. The first question that should be asked of why any high profile person on the spectrum decides to talk about others with autism, is ‘why do you care
    ?’ Ask them where their heart is coming from.

    But of course, this busts the stereotype that people on the spectrum are emotional human beings.

    :-) Donna Williams *)

    (ps sorry this posting is so long)

  27. I have encountered this a lot, when I hear adults who don’t know much about autism except for maybe what they read in an article of Newsweek, and many times I hear such things as, “I couldn’t imagine what it would be like” — that just because they, from their set of life experiences and their personality, that they couldn’t conceive of anything but hellish existence if living as autistic. So, if autism is incompatible with happiness as to their definition, then they assume that this must be so for everybody, including those who actually have been autistic for all their lives.

    Sometimes people look at my test scores, and they talk about, “You’re so high-functioning!” or people see me doing my rocking and hand motions, and when I just cannot talk, and they say, “There are a lot of therapies available to help you fix that, nowadays.” Which I’m not always opposed to, it depends on what is the therapy, what are the goals (who decides these?), what are the methods, etc. I go to speech therapy; I see that it could help me achieve some of my goals. But I will not sit there and let someone try to force me into certain behaviors that are unnatural and often painful to me.

  28. Perhaps it’s all in our own interpretation of Dr. Grandin’s communication. I most certainly don’t agree that those that are unable to communicate verbally are any less than those that can communicate verbally.

    I am just now beginning to understand I just might be one who is within the Autism Spectrum. I’ve said the same thing to many on the Spectrum -or with any individuals with different/exceptional/extraordinary abilities. Why do we allow the division and categorization of disabilities, which makes one group seem inferior to the next. I really dislike this in the world of Autism, as now we have some who think it’s okay to have Aspergers, but not Canner Autism – give me a break.

    Every individual is a gift!

    Just my 2 cents.

    Carmen
    Education Advocate – Georgia

  29. I should be careful to note that when I talk about hundreds of studies, I am referring to individual studies within research papers. The actual amount of papers published in peer-reviewed journals that are about such studies is in the neighborhood of a hundred or so.

  30. I suppose there’s a chance that what Temple Grandin is really guilty of is….living inside her own experiences, and thinking it applies globally. You know, kind of like everybody else does.

    The thing that keeps striking me as I read this blog – which I found through a recent article in _Wired_ is the amount of blame I keep seeing placed on “normals” (like me) for not understanding and not accepting….for not *knowing*, in fact, anything more than one can pick up in online articles and in trade magazines like Exceptional Parent (EP). For not speaking your language, but insisting you speak ours. For not knowing how to act around behaviors we ourselves are forbidden by society to do, and which forbidding we have internalized. I keep seeing this.

    But it is not really reasonable to say “Why should we have to learn your language? Why can’t you learn to see through our eyes and value what we experience?” But life is *like* that. I speak English, French and Spanish, with a smattering of German and Italian. I don’t speak Tagalog. I don’t speak Estonian. I don’t speak Swahili or Mandarin Chinese. I don’t speak American Sign Language (and the plight of the deaf is not all that different, by the way – I’ve heard a lot of resentment from the deaf community that hearing people “don’t learn their language, but expect them to speak aloud”). But if I lived in the Phillipines, or Estonia, or Swaziland, or China, (or if, hypothetically speaking, my land were conquered by a force from one of those countries) I would have to learn those languages….unless I could find an enclave of people who spoke my language (such enclaves or towns-within-town are very common in large cities – neighborhoods of Italians and Hmong and Pakistanis and so forth) where I could speak my native tongue…where in fact I might never have to speak the local language at all.

    No. I think first, people must be offered the opportunity to know and understand that there *are* other ways for brains to function – other languages, if you will – and that those people are indeed people….as you are doing. And then you have to invite people into your world, rather than shaming or blaming them for not having found it on their own. Most people can’t even understand their fellow members of their local housing authority meetings, with whom they presumably share a great many similiarities, including social class, language, educational background and other societal standards….even one family to another, expectations of what is and what is not acceptable behavior can vary so widely that the chasms can be hard to bridge….how much more so, when the differences are more stark?

    Please, invite people in and offer to teach them, and they might come. Yell about how they never saw the door in front of their faces, and I doubt most with even want to touch the handle. If you want to be an ambassador for the rights of autistic people, and not have Temple Grandin do your talking for you….make a more convincing argument. She is, after all, the only publically-known autistic individual most will ever read or see.

  31. If you’re reading my blog, you might want to read “No good guys and bad guys here” as well as some of the stuff about characterizing people as “angry” as an excuse to ignore what they have to say.

    And you might want to talk to some of my Deaf readers about the fact that while it is possible for hearing people to learn sign language or use interpreters, it is not possible for most Deaf people to learn speech and lipreading. So come to think of it you might want to read some of the stuff about power imbalances too. I can’t remember where I stuck it, I know I pointed it out in discussing a review of Irit Shimrat’s work at one point.

  32. Angela: I think Amanda is referring here to this post: http://ballastexistenz.autistics.org/?p=411 … it might also be helpful to read I’m the monster you met on the Internet (which links to several other blog posts that are relevant, which I encourage you to read). And power imbalances: The meaning of power (unfortunately one of the links from that article, “Mourning has broken” by Dave Hingsburger, is now broken–but if you ever find another source with that article do read it, it’s truly excellent); also What you know (which I’m afraid you might misinterpret as “angry” or belligerent … think of it instead as a strong challenge to you to rethink assumptions, which is not the same thing even if it might initially feel that way if rethinking assumptions feels uncomfortable for you)

    Amanda, re the post on Irit Shimrat … is this the one you were thinking of? What happens when you ignore power relationships Or did you mean this one: Assorted psychiatric distortions.

    I often find it interesting when new-comers read Amanda’s writing as “angry” because I have rarely found it “angry” in the way that I think people usually mean. And on the occasions that it is “angry”, I don’t think it is usually in a confrontational way where she intends to blame people. At least not when she is talking about a relatively straightforward lack of comprehension of the way an autistic mind really works and so on, as opposed to the kind of devaluing and abuse that is also done to many autistic people.

    I have gradually come to think that in some cases (and I’m not trying to tie any one specific theory to your specific case because I don’t know you so I’m not in a position to figure out which of the following might apply to you, or whether none of them do and something else completely different is going on; I’m just offering a range of possibilities in case any help provoke thinking): I think in some cases, people may be reading anger into her writing because she raises ideas that make them feel uncomfortable and so they assume that their discomfort is the intended result (even though it might actually be only a side effect); or they feel defensive and because of their own defensiveness they project anger onto Amanda when it might not actually be there (a very natural reaction, though it can unfortunately get in the way); or in other cases they might see anger, but mistake the target of that anger (e.g., maybe I’m doing my own projecting here but I think Amanda *does* sometimes get angry at (as one example) people who devalue others, including devaluing their lives, just because they are perceived as being less intelligent and so forth. And then other people who are NOT doing any of the things she gets angry at somehow misread her for being angry at *them* just because they might share one or two characteristics in common (for example, maybe they are parents of autistic children). Or in still other cases, they may mistake blunt, forceful language for “anger” when it may simply be a strong expression of a deeply held belief. Not all strongly held beliefs are rooted in anger; some can be rooted in love, for example.

    It might help to bear in mind that it can often be much harder to accurately read the intended tone of printed text.

    Another issue is that autistic people can go for plainer, more straightforward language than neurotypical people are accustomed to. Sometimes language can sound “angry” NOT because anger drove that language but simply because it lacks some of the “softening” language that neurotypical people are trained to use and to expect from others. It might help if you tried to mentally read some of her text in a softer tone–insert “softening” language (what I think Amanda might refer to as “social positioning” language) and see if that helps put it in a different light.

    As a Deaf person — no, I don’t actually expect hearing people to learn ASL. At least, not universally. Not any more than I have learned Estonian or whatever. But, I do think it can be worthwhile remembering that, although most Americans *could* learn French, Spanish, ASL, whatever–and most French people could learn English, Spanish, and French Sign Language (LSF), and so forth, not all deaf people can learn to speak or lipread.

    Personally I speak: but it will always take me more effort than it takes most hearing people to be constantly conscious of exactly where I position my teeth, my lips, my tongue, how I move them, and how I control the flow of air through my mouth, and how I produce vibrations and whether I’m producing vibrations nasally or by other means. It will never come to me with the same ease that it does for people who have simply heard themselves and others speak all their lives and integrated the connection between their speech sounds and the movement of their mouths at a deeply subconscious level from infancy onward.

    And that’s just speaking, which comes to me much more easily than lipreading. I do lipread, especially if I’m in a position to supplement that with my residual hearing, but it takes enormous effort and energy.

    So for people I am around all the time, like immediate family — yes, I DO think it is fair to ask them to be aware and accept that, yup, communication with a deaf person is never going to be quite as smooth and easy as it is with a hearing person. And I think it’s fair to ask them to meet me half way by learning, if not a perfectly fluent level of ASL, then at least enough so that we are putting in a roughly equal level of effort and energy into our communication. (I acknowledge that for some people, especially people who find it difficult to learn new languages, sign language will always take a certain amount of constant conscious effort and energy too because it’s not their natural language. But no more so than the effort I invest into lipreading. Although it would be unreasonable of me to expect perfect fluency on their part [I do sometimes get *frustrated* that some people I love aren't more fluent than they are, and I think I have a right to be frustrated when it *does* impede on our communication in important ways, but that is not the same as *expecting* or *demanding* that they necessarily do better], I don’t think it is unreasonable to ask that they try–in the exact same way that I am always investing a lot of effort into our communication also. Why should I be the one to invest 80% of the effort in every single communication interaction? Which is very often the case.

    And for people like co-workers — no, I don’t expect them to be fluent in ASL, but it *did* make me feel really good that some of them took the effort recently to learn how to sign the “happy birthday” song when they gave me a surprise party recently. And it makes me feel more welcome at the office that a few people have learned to occasionally sign “good morning” or “good evening” — even though their signing is imperfect, it shows effort. And given that I invest a great deal of effort into our communication every single day above and beyond what most hearing people need to deal with, I don’t think it is so reasonable to hope for an occasional sign of extra effort on their part, even if they never learn anything besides “good morning”. (And just to be clear: none of the preceding is meant to be in an angry tone, only in an assertive tone, which is not the same thing. I’m saying this because I worry if you read Amanda’s tone as “angry” then you might also be reading mine the same way, when it’s not meant to be angry either.)

    I think there is a certain parallel here with autistic people. As a Deaf neurotypical person, for example, I tend to be most comfortable with eye contact: as a Deaf person accustomed to visual communication, it feels unnatural to me to communicate without eye contact (though I have had to get used to that with my hearing partner, who seems to be more comfortable simply hearing me speak). So I usually value eye contact even more highly than most hearing neurotypical people do (my partner is neurotypical, for example, and does not value it as highly as I do). But if I were to meet Amanda or some other autistic person, I think it would be much easier for me (even if still a certain adjustment) to learn to do without eye contact for the duration of our interaction than it would be for Amanda to learn eye contact (see her post on Eyeballs, eyeballs eyeballs). So I think it would be perfectly fair and reasonable for Amanda to expect me to adapt my interaction patterns while I’m around her, whereas it would be less reasonable to expect her to adapt her own interaction patterns to fit mine because it would be much much more stressful for her than it would be for me. That’s not to say there would be *no* stress for me, but it would be considerably *less* stress.

    Not really quite relevant to this discussion, but I think this one is a good post anyway: http://ballastexistenz.autistics.org/?p=431

  33. When people talk to me about HFA v.s. LFA I say that it is really a misnomer because HFA can be just as “disabled” in a predominately non-autistic world and LFA can be just as functional as anyone else you just have to brake out of your destructive paradigm. However I often get the response “Well your High-functioning you just don’t know” Then I show them your brilliant work and hope they can learn to understand.

    I don’t believe in HFA v.s. LFA we are all people and we are all different and though labels can be helpful I find that getting “too” specific with elaborate sub categories just serves to divide us and foster prejudice, hatred, mistrust, and pride.

  34. When I saw Temple Grandin speak, I had the same feeling as expressed in the comments above, that she seems to baselessly assert that her experience is that of all or most autistics. She does seem to have trouble making distinctions… I remember her conflating inventiveness with AS, saying that without AS we wouldn’t have the people who invented the ipod. And talking about how Autistic people think visually so well. Personally I have poor visualization skills but that doesn’t make me any less an Aspie. And I know many people with autism who are not capable of or interested in designing ipods.

  35. I used to agree with her. I’m sorry. I’ve been anticure for years w.r.t. aspies (my own lable) but before I saw your video “in my language” I thought that “low functioning” people were just suffering & had nothing in common with me (which I could blame on NT influence, but it seems cowardly. if I’d thought to ask thequestions I would’ve got the answers). now I try to be better than that, try not to judge without understanding (I’m finding it hard but…)

    thanks for showing me that I was wrong.

  36. Pingback: Welt-Down-Syndrom-Tag: Gegen pr?natale Diagnostik und selektive Abtreibung - Autismus-Kultur

  37. Pingback: High and low | autisticook

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