Unstrange Minds is a book from George Washington University Professor of Anthropology – and Dad to Isabel, his autistic daughter, Roy Richard Grinker about autism, its history as a diagnosis and how it exists as a cultural phenomenon in other (non-Westernised) countries.
Epidemic
The first thing that Unstrange Minds does is quietly and comprehensively dismantle the idea of there having been an autism epidemic in the sense of that concept relating to a sudden, massive increase.
The shift in how we view autism….is part of a broader set of shifts taking place in society.
Page 4
Grinker goes on to take the reader through the often fascinating history of autism as a diagnostic label (Kanner is pronounced ‘connor’ – who knew??) to illustrate his theory of the apparent rise in autism prevalence being intrinsically linked to these cultural changes such as the growth in child psychology as an area of practice, the decline of psychoanalysis, the rise of advocacy organisations, greater public awareness to educational needs and change in pubic policies:
Doctors now have a more heightened awareness of autism and are diagnosing it with more frequency, and public schools….which first started using the category of autism during the 1991 – 1992 school year are reporting it more often….Epidemiologists are also counting it better.
Page 4
Grinker then goes on to make a similar point to the one that Paul Shattuck was making earlier this year:
Still, these rates may not be proof of an epidemic. Why? Because the old rates were either inaccurate….or based on different definitions of autism than the ones we use now.
Page 4 – 5
The point about different definitions of autism contributing to the ‘rise’ in autism prevalence is frequently dismissed by the mercury militia et al but Grinker has collated the ever changing face of the DSM on the books accompanying website and it graphically demonstrates his point.
Autism Abroad
Unstrange Minds is one of the first academically rigorous books (that I know of) that takes a look at how autism is perceived outside the Western experience. Grinker looks in depth at Korea and India. The picture is not always pretty but it does provide a striking example of how the old adage about ‘out of sight, out of mind’ can contribute to a cultural perception that autism is something unmissable. Those who believe in an epidemic of autism often state that it is ‘impossible’ to miss people with autism. They should consider Grinker’s experience in Korea:
When [Milal School] was being built in the mid-1990s, some of the wealthy residents of this quiet neighborhood south of the Kangnam River in Seoul picketed the site, cut the school’s phone lines, physically assaulted school administrators, and filed a lawsuit to halt construction, because they believed that the presence in the neighborhood of children with disabilities would lower property values. The school opened in 1997, but only with a compromise. It was required to alter its architecture so that the children were completely hidden from public view. Some of the protestors were brutally honest. They said they didn’t want their children to see or meet a child with autism.
If we believe this type of situation and deliberate obfuscation of autism has never occurred in the West than we are kidding ourselves. The situation in Korea now, is how we were in the West once upon a time. This theme is explored thoroughly by Grinker. Remove the places names and this could be London of the 1970’s or New York of the 80’s:
In Seoul, a city of eleven million people, the story is different. There is invisibility in numbers. Posed to an adult, the question ‘Do you know any children who don’t speak well?’ usually goes unanswered, partly because people are reluctant to talk about such things for fear of shaming the child’s family. Equally, people with autism are sometimes hidden away, often go untreated and are seldom integrated into community life.
Page 233
Grinker offers an anecdote from his own life with his autistic daughter Isabel that shows how this wish to exclude difference still turns up in Western culture, even today. A camp director phoned the Grinkers with news that Isabel had ‘took her clothes off in the classroom and the mother of another girl is demanding your daughter be removed from the class’. The camp director had not spoken to the teacher and after he had it transpired that Isabel had merely taken her arms out of her sleeves and put them under her shirt because the air conditioning was on high. It was clear that the whole situation had been contrived by the parent of the other child and indeed, when the camp refused to place Isabel in another class, this same mother withdrew her child (pages 273 – 274).
Autism At Home
The sections of the book directly concerning Isabel are my favourite. My role as dad to an autistic girl makes me appreciate the anecdotes and clear stories of love that other dads of autistic girls convey. The Grinkers don’t shy away from the bad side as well as the good side and detail the battles with American educational authorities that echoed our own battles with our LEA (an ongoing battle even today) to even be recognised as needing such services.
Grinker’s anecdotes about his family (like me, his home life is female oriented with a wife and two daughters) are too poignant and contextual to share and quote well but believe me, they are the lifeblood of the book, making the academic discussion real to parents and people who are autistic.
The author Ron Suskind called Unstrange Minds:
…this big-hearted, uplifting, fiercely rigorous book-a genuine gift to readers who believe in the power of truth.
which is exactly right. It is firmly committed to the truth. It is committed to a rigorous examination of how and why we came to think of autism as having ‘an epidemic’ and explaining how cultural beliefs led us to this stance. It is however also brave, kind, hopeful and above all real. Not a dusty anthropological tome in any way, Unstrange Minds is written in engaging style by a writer who clearly finds his subject fascinating and who has a deep cultural as well as deep personal knowledge of how autism exists as a type of existence as well as a diagnostic label.
Its available on pre-order from Amazon.com only. Don’t let that stop you. Pre-order it from the US no matter where you live. The extra air-mail fare is well worth it. I read the whole thing in two weeks worth of train journeys to and from work and very nearly missed my stop more than once due to being utterly absorbed. Buy it. Read it. Enjoy it.
Left Brain Right Brain 
Kev, nice review of an excellent book. When I got the book, I couldn’t put it down. The description of Kanner is so great. The history of psychological advice to parents is eye-opening to say the least. I have pre-ordered it from Amazon.com, so I can have a regular copy (the one I have now is a galley copy, which is interesting too because you can see some of Dr. Grinker’s handwritten corrections for the publisher.
I love that they took Isabel to Monet’s garden in Giverny. I love that Isabel plays the cello. I’m fascinated that she went to a pre-school in Washington, D.C. that was attached to the Smithsonian Institute. Excuse, me, is that not every little girl’s dream??? (it would have been mine had I known about it at age 3) Isabel got to learn about colors, shapes and textures by looking at famous art! How wonderful!
The Grinkers, visited a child psychiatrist in the D.C. area with Isabel in 1994, and were told that the autism was Isabel’s mother’s fault, that she obviously was a not caring enough of a mother, and hadn’t paid enough attention to Isabel, basically. The refrigerator mother concept is not quite dead yet. It’s quite alive in Korea and other places, too. That was eye opening to me.
This was interesting, too.
“I realized only later, while writing this book, how pejorative a term “mental retardation” has become, and how a diagnosis of autism gives hope to parents of children previously labeled mentally retarded. Many parents I’ve met have faith that autism means there is a “normal” person imprisoned inside (echoing Bettelheim’s “fortress” terminology) and that, with the right therapy or medication, their child’s true self will emerge.”
Holy cow. No pressure there.
I think this ought to be used in intro. to psychology classes or clinical psychology classes… almost any kind of psychology class, this would be GREAT supplemental reading. The history of psychology stuff is interesting. It shows how mass hysteria (without calling it that) has taken over the media and how almost everyone believes in this non-existant “epidemic” now. All these “chicken littles” are running around screaming that the sky is falling. The sky may be falling, but there is no evidence for anything like an autism epidemic.
_”o. I’m fascinated that she went to a pre-school in Washington, D.C. that was attached to the Smithsonian Institute. Excuse, me, is that not every little girl’s dream???”_
Every little boy’s too ;o)
_”(the one I have now is a galley copy, which is interesting too because you can see some of Dr. Grinker’s handwritten corrections for the publisher”_
Yes, that kind of added to the ‘experience’ for me too. Not sure why :o)
_”I think this ought to be used in intro. to psychology classes or clinical psychology classes”_
Definitely. Not only is it accurate, truthful and academically rigorous, it helps give a _face_ to autism which I think may be lacking to students of the discipline.
Of course Grinker does not stand outside of the social phenomenon he describes, he is a part of a new epidemic in genre writing which is colonising our native literature with parents accounts yet again.
The facts remain that to publish a book is usually something reserved to the economically and socially priveleged sectors of society, and that a natural prejudice seems to exist against the autistic writer who wants to go beyond self narrating zoo.
Perhaps I shall have to write about the parent/academic colonisation problem.
_”Of course Grinker does not stand outside of the social phenomenon he describes, he is a part of a new epidemic in genre writing which is colonising our native literature with parents accounts yet again.”_
Assuming, of course, that Professor Grinker is NT, right?
I also don’t think he’s describing social phenomenon, rather than cultural phenomenon. He’s not (as far as I know) a sociologist.
I don’t see anything wrong with parental accounts per sé. Some are good, some are bad. This one, in my opinion is good. Would I rather read a book about autism written by an autistic person? Definitely. Does this invalidate the worth or positive contributions this book has to offer? Not to me.
Not a sociologist! (said in the manner of Edith Evans intoning “a haandbaaag”)
Not a sociologist indeed, then I hold even more against him for such a book. It goes back to the political issue that Amanda wrote of some time back.
We need political books by autists examining the sociological/cultural/historical phenomenon, because they will change things. It is just as well that Martin Luther King was Black, not a white liberal college professor isn’t it?
It can be worthwhile even if I may not agree when I see how some people have a different perspective. That is not to cloud the issue to say that NT’s should be the “authority” on autism, but even among those on the spectrum there is often contention and misunderstanding. I find this really to be parallel perhaps to another commentary about who gets to speak. People also dismiss those on the spectrum or those who are labeled with other conditions as being unable to see the big picture. If that is not right to do than if an NT parent has something insightful to say than why is that wrong.
Just like with the civil rights movement in the U.S. – not all African Americans had the same vision about the civil rights movement. Or that the ideas for the civil rights movement occured in a vacuum without different groups of people coming together. Bias is also not something inherently bad – most people have some bias in one way or another – some are just better able to focus on a more neutral perspective.
Dr. Grinker was already a published writer when he got the idea to write about autism. Autistic adults probably aren’t going to be able to write a somewhat successful book on whatever, and then use that as a stepping stone to get a book published on autism, not any time soon, anyway.
Of course, *I* should have written the first big book that exposes the non-autism epidemic!!!! (kidding) It would be super if autistic adults (other than me, I’m not interested) regularly had books published the way Temple Grandin seems to be able to. Temple has one viewpoint and we know she doesn’t speak for most of the autistic advocates. Neither does Stephen Shore (insert cranky comment here). Neither does Jerry Newport (insert another cranky comment here). Speaking of Jerry, “Mozart & the Whale” is said to be available on NetFlix and is available for purchase on amazon.com.
Grinker’s viewpoint seems to be that of an NT parent and it’s not the viewpoint of autistic advocates, but it’s not bad, really not bad.
Er, how do you all know that the author is neurotypical?
Preordered on Amazon. Looking forward to reading this book. Thanks Kev
Andrea, I don’t know if you include me in the “you all” I didn’t say he was NT. I said his viewpoint seems to be that of an NT parent. I read the book. He doesn’t say, “I recognize myself in autism…” which is what an autistic parent would probably say.
I am not saying that he’s NT, I’m saying that the viewpoint in the book is that of an NT parent. As an amateur autie spotter, I’d guess that he might be BAP, maybe, but he seems NT to me.
Hey Dr. Grinker, please don’t be offended, this classification stuff is what lots of us like to do. 🙂 How’s your eye contact? Do you flap when you get stressed? Pace? Collect washing machines? Do you always remember to comb your hair? 😀
This book is definitely on my ‘must read’ list. It’ll be easier once they pass the CTA (Combating Time Act) and add that 25th hour to each day.
Regarding the ‘must be one of us to write about us’ thinking, I find it interesting that some think that the observations and opinions of ‘insiders’ are automatically worthy of more weight than those of ‘outsiders’ – in ASD and in other realms. Were the insights of Alexis de Tocqueville regarding the United States less valid than those of the average 19th century American farmer? Sometimes an intelligent outsider can be more objective than insiders, or can have knowledge or experiences that can lead to insights or interpretations that insiders may not consider. Sometimes.
In my case, are my thoughts regarding ASD a priori less valid than those of someone on the spectrum? What if I’m really an aspie (Yup. Surprise! Can I still keep my teeth?). Are my thoughts now upweighted in value? Am I now more insightful? What about my pre-outing posts and comments? Do they now become more insightful too? Or are only my post-announcement thoughts of increased value?
Personally, I try to consider the value of ideas, observations and insights on their merits. Their source adds perspective, but does not necessarily add to or detract from their value (although it can – but only if it is relevant).
Ian Parker’s an Aspie? Oh, well, don’t listen to him, then. He’s one of THEM!
I pointed out on Orac’s blog a long time ago, that by saying that I have an Asperger’s dx, everything I say is either automatically more credible or automatically suspect of being worthless drivel, depending on who is reading my words. In the wider world, a book written by someone claiming status as an NT will be given more credibility on it’s face, than one written by an ASD person.
That’s sad, of course, but ASD people are still regarded as freaks of nature (or toxic victims of big pharma) for the most part.
I think Larry has a point, the big selling books about autism tend to leave the people with real first hand experience with autism out in the cold.
Oh, just in case someone wants a book to really hate, Cure Autism Now’s founding mother, Portia Iversen, has a book out soon. It’s called “Strange Son.”
Grinker’s book is called, “Unstrange Minds:…” Iversen’s is “Strange Son.” Isn’t that interesting? I vote that they retitle her book: “Strange Mom.”
Iversen’s book is for sale in a couple weeks, Grinker’s in about 4 weeks and his is ahead of hers quite a bit in Amazon sales ranking. Yay!
Why can no one not see, that they are making one rule for the parents of autism speaks, another for parents like Grinker.
Well hypocirisy is rife in the autistic world too, for on the one hand “we” have been condemning those parents who only acknowlege us when we agree with them, well it seems we are allowing token parents too, and only if they say what we want.
The priniciple is the same, they don’t speak for us and they are still part of the systematic cultural and social oppression that lowers our employment opportunities and ignores what we have to say.
Unless they openly acknowlege in an apologetical way what they are doing in there works, then they are not allies, unless they use the fruits of there endeavors to make it easier for us to publish politically cogent works, they are not allies.
They may be less negative than autism speaks, they may be more disposed toward respecting us, but they are part of the same machine.
Just as the NAS is still part of the same machine until we actually run it.
Incedentally I have had another book idea turned down yesterday, probably because in the first instance I chose the wrong publisher for the genre.
However I fear it will be a long time before we see a book written by one of us that is anything other than the self help manual, or self narrating zoo exhibit genre.
I have not seen anything in print that would stand up to academic rigour.
What is worse I believe that these parent authors, never mind there best intentions, are plagiarising us, they read our blogs, they lurk on our lists.
[edited for the ‘n’ word – sorry Larry, I appreciate the point but that’s a word I’m not comfortable with]
Grinker may be making some very good and necessary points, but he is still not the right one to be making them. Until we are in print saying those same things, the message does not get out, that we are fully capable of doing that, not some zoo kept protected species whose advocacy has to be mediated by parents. (even where those parents are diagnosed if the perspective is slanted toward a parent not an individual perspective)
Larry, I entirely agree. The voice of an autistic person on matters like these should carry more weight – no question. I also agree that we need to find a way to get the voice of autistic people read on matters beyond the ‘self narrating’ environment.
However, what I’m suggesting to you is that whilst we fight for these things, other things that come along that are positive and thoughtful and rigorous should be seen in that light. Grinker’s book – in my opinion – is all these things. The fact that he sent Galley copies of it for review to both autistic and non-autistic people with no suggestion of censure speaks volumes about his efforts. In terms of the sort of book it is, I think a very definite nod to his intentions and beliefs.
I think that you are wrong in your characterisation of Grinker and the comparison to MLK and Professors in Ivory Towers. I know that Professor Grinker battled long and hard to get his book published. I also know that its good to hear a parent saying these sort of things. I also think that what his daughter has to say about autism will be even more interesting and positive (should she ever want to write about that – or even write at all).
I guess I’m saying give it a read Larry, you might be surprised :o)
I’ll have to get this book, considering its author gets that the autism “epidemic” is caused by cultural shifts. Larry is correct that Grinker is participating in the construction of autism with his book, and could thus affect what he’s observing. It’s like Heisenberg’s principle.
As to this passage quoted by Ms. Clark:
“Many parents I’ve met have faith that autism means there is a “normal†person imprisoned inside (echoing Bettelheim’s “fortress†terminology) and that, with the right therapy or medication, their child’s true self will emerge.”
This was true since the 1800s, long before Bettelheim, as Dr. Down observed.
Joseph, in the quote, I think that Grinker is saying that the “imprisoned” terminology comes by way of, or probably came by way of, Bettelheim. In this case he’s also contrasting the use of two terms, “mentally retarded” vs. “autistic” those two terms weren’t used in Dr. Down’s time, but yes, back then there were parents who thought their non-autistic children were somehow still inside the autistic child somewhere.
I expect Dr. Grinker is going to take some very serious real world harassment from the more violent element of the mercury parents because he’s seriously undoing their epidemic rhetoric. He’ll be called every horrible name in the book and accused of academic dishonesty and whatever else they can. He might get serious, police investigation worthy threats. How’s that for taking as stand on behalf of autistic adults? Even if Grinker doesn’t see it that way (maybe he does), but just as taking a stand for the facts?
By making a big noise that autistic adults even exist in large numbers, isnt’ he making it easier for autistic adults to get published in the future?
Grinker is not claiming to be a voice of autistic adults, he doesn’t need to write anything to benefit autistic adults, but he has.
Ms Clark wrote:
“Ian Parker’s an Aspie? Oh, well, don’t listen to him, then.”
Did anyone ever listen before? 😉
One of the things I would differentiate between in the ‘who gets to talk about ASD’ discussion is the difference between ‘discussions about autism’ and ‘autistic voice’. I would agree that autistics are more likely to have a better sense of autism than non-autistics at a personal level, and that non-autistics attempting to portray an ‘autistic voice’ need – from a credibility perspective – to demonstrate how they have come to have the knowledge of an autistic experience to do so. It’s as if I were to write in the voice of an aboriginal Canadian (for the record, I’m a first generation Canadian). To do so with any credibility I would need to demonstrate how I’ve acquired the knowledge and experience to accurately portray this ‘voice’, or at least to have my ‘voice’ widely authenticated within that community.
Having said the above, I would also suggest that any one autistic can capture the whole range of autistic voices and experience about as well as Kev can be assumed to represent the sum total of the ‘English experience’, or I can do the same for Canada. There is a difference between being ‘a’ representative voice and ‘the’ representative voice.
In contrast, to suggest that only autistics should be able to write about autism or that no one else has anything to add strikes me as intellectual censorship, among other things.
Larry wrote:
â€Grinker may be making some very good and necessary points, but he is still not the right one to be making them. Until we are in print saying those same things, the message does not get out, that we are fully capable of doing that.â€
I totally disagree. The fact that Grinker may be saying something in no way precludes anyone on the spectrum saying the same thing – or disagreeing with him, for that matter. It is not a zero sum game. And in no way does Grinker’s writing suggest that autistics are not capable of saying the same things, any more than an academic in England writing about France suggests that there are no French voices capable of doing the same. Does this writing oppress the French? Or alter their ability to be French? Or suggest that their country can only be understood through the intervention of an English academic? What an intellectually stunted world it would be if only ‘we’ (who are of course completely objective, bias free, and knowledgeable of the full range of human experience and context) were capable of or permitted to write about ‘us’.
Joseph wrote:
†Larry is correct that Grinker is participating in the construction of autism with his book, and could thus affect what he’s observing. It’s like Heisenberg’s principle.â€
Perhaps, assuming that Grinker’s work has merit (it certainly sounds like it does) and influence. I’m not sure why that is wrong? I would agree that autistic voices have not been heard enough, but is the answer to censor everyone else?
I haven’t read the Grinker book, although it sounds like the first autism-parent book I might want to read. I like the different cultures’ views of Autism idea, although I am a little disappointed if he leaves out Latin America (Just a personal bias on my part. Asia is every bit as interesting). And because I lack some background in this discussion, I may be misunderstanding some parts of it. But here is an idea:
I think this is like, just recently in USA we had a lot of new ugly legislation about immigration, with a lot of politicians (and also vigilantes) trying to seal our borders and trying to deport the people who are here illegally, who mostly came illegally because the laws are stupid. There were protests against this, trying to say, basically, “Mexicans and other immigrants are people, and have human rights, and plus, they are contributing a lot to the USA society.” It was odd to be at the protests, as one of the very few (like less than 1% of the crowd) non-hispanics protesting in my area. And it seemed like, if just immigrants protested, nobody was going to listen. We had to get more “gringos” saying, basically, “we want these people here living and working alongside us.” That would be, somehow, more effective than people from outside saying “we want to live and work here alongside you.”
Right now, autistics are in the place of “not-from-here”. We are foreigners in our own cultures. It is one thing for us to say “we matter, we are worth having here, we have a place next to you normal people,” and another for non-autistics to say, “Yes, you do. We want you here with us.” I think both are needed.
Larry, I don’t get your point about writing by autistic parents. Are you saying that, if an autistic parent writes from a parent’s point of view, it detracts from autistic people speaking for themselves? If so, I think that’s going too far with your point.
Mr Parker I regret that I have to consider you as the enemy too, for your total failure to understand the import of what I have been saying.
Who are you the enemy to?
Yourself.
Natalia,
Dr. Grinker mentions Peru and has a very interesting (shocking at first) account from there. But there isn’t a lot about Latin America.
He has a page or 2, maybe 3 about Native Americans in the U.S.
I agree with what you said about immigrants and how no one really cares what they think. People would care if they all suddenly packed up and went “home.” (don’t get me started)
Larry, you wrote:
“Mr Parker I regret that I have to consider you as the enemy too, for your total failure to understand the import of what I have been saying.”
The impression I have is that you view anyone other than autistics who communicates on the subject of autism, regardless of their POV, as somehow appropriating the voice of autistics, regardless of whether they actually claim to be speaking for autistics, as distinct from about them.
Starting with the acceptance of input of parents et al, “only if they say what we want” as hypocritical (which I would agree with, BTW, but coming from the opposite direction), you wrote:
“The priniciple is the same, they don’t speak for us and they are still part of the systematic cultural and social oppression that lowers our employment opportunities and ignores what we have to say.
Unless they openly acknowlege in an apologetical way what they are doing in there works, then they are not allies, unless they use the fruits of there endeavors to make it easier for us to publish politically cogent works, they are not allies.
They may be less negative than autism speaks, they may be more disposed toward respecting us, but they are part of the same machine.”
I interpret that to mean that only ‘we’ can legitimately communicate about ‘us’. All other communication about ‘us’ by ‘others’ is illegitimate and usurping, unless they actually write nothing beyond “please excuse me for communicating about autism, but I am doing so for the strict and narrow purpose of asking you to listen to autistics”.
As you wrote:
“Grinker may be making some very good and necessary points, but he is still not the right one to be making them. Until we are in print saying those same things, the message does not get out, that we are fully capable of doing that, not some zoo kept protected species whose advocacy has to be mediated by parents.”
I interpret this as “until we have communicated about ‘us’ to our satisfaction (with the implication that such communication also has to be widely received and adopted), no one else has the right to communicate about ‘us’, because their communication implies that we are incapable of communicating without their assistance.”
Is my interpretation correct?
If so, then I do understand what you have been saying and can surmise your perception of the import of your words, but I disagree. I do not believe that any group or community necessarily contains within itself the complete knowledge of itself, and even if it did, this would still not give it the right to silence all others (as distinct from the right to ‘criticize’ others’ inaccuracies and misinterpretations). If that disagreement makes me the enemy then so be it.
Larry, if you meant that we shouldn’t need the NTs’ validation to say we can be part of “their” society, that’s true in a way.
But on the other other hand, the society is made up of both kinds (and other kinds) and so all need to accept the other kinds of people (or at least people of other kinds that are also not doing evil stuff)… So, in some sense, a period of increased acceptance of “outsiders” by “insiders” is necessary, in order for all to eventually be “insiders”. I think.
And yeah, I don’t think that non-autie allies can “speak for” autistics… in the sense of replace our voices or their kids’ voices. But they can “speak UP for us” in a way to say “look, world, not all NTs have to think the way most of you do about people we don’t understand. You could APPRECIATE the people you find strange.” And we need that, too. Not as heroes, necessarily, or as saviours of any kind, but just as a voice of reason or something.
Do not click. Wait for Kev to remove it.