Review of Roy Richard Grinker’s “Unstrange Minds: Remapping the World of Autism”

Cover of "Unstrange Minds: Remapping the ...

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“Unstrange Minds” is an anthropological approach to the questions of autism: Where did autism come from; who came up with the term and under what historical and cultural influences? How do different countries recognise and treat autism, and why do their approaches differ? As Roy Richard Grinker attempts (and succeeds I would say) to answer these questions, he also weaves in personal stories of autism; from his own family life and from other families across the globe.

The first half of the book focuses particularly on the emergence of autism as a condition, and the question of whether there is currently an emerging “epidemic” of autism. (The book is published in 2007, but the answers he provides about the emergence and growth remain as true today). He investigates evidence of autism before it was known as autism, and shows how even today its existence in various countries continues to be often unacknowledged and misunderstood, and the consequences of how different societies approach the diagnosis and existence of autism.

At times I found the descriptions of how my son would have been treated in times gone past, so disturbing that I had to look away from the book and take deep breaths. It has the same emotional impact when I read of how mothers have been held responsible for their children’s autism; speaking aloud all those early doubts and concerns a mother has even today when receiving such a diagnosis for their child. Grinker doesn’t just share these things for shock value though (and there is definitely shock value through-out the book); he carefully explains how those theories and resulting treatments came about.

The second part of the book moves away from the initial questions of origins and epidemic of autism, and shifts more towards stories of different experiences, using in-depth examples from the United States, India, South Korea, and elsewhere. I didn’t find the second half as engaging or informative as the first half (where Grinker had already introduced examples of how other countries respond to autism), but it is the second half which will perform an important and vital function for the parents reading the book who might be looking for hope and guidance for their own autistic child.

This is an important book particularly for people who struggle to comprehend or appreciate the fluidity of diagnostic terms, which is particularly relevant and topical with the DSM-5 diagnostic changes looming. It is also an excellent resource for people trying to understand the changes and growth in autism numbers. I thought I already had a reasonably good grasp of these issues, but this book took my understanding to a new level.

A valuable book in many regards.

***

Link to the Unstrange Minds website.

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5 Responses to Review of Roy Richard Grinker’s “Unstrange Minds: Remapping the World of Autism”

  1. Sharon says:

    I’m currently reading this book. Highly recommend it.

  2. Do you see any problems with Grinker’s book?

    Any conclusions he has made with which you disagree?

    • Hi Harold,

      There are two aspects of the book that I didn’t particularly like, but neither detracted from the whole and both are subtle underlying focuses that I think I was overly aware of because of my personal experiences, rather than necessarily problems with the book itself. But since you ask, I’ll share them anyway, and also share why I decided they were not significant or particularly noteworthy draw-backs of the book:

      The first is the way Grinker frequently returns to the role religion has played in the various lives of the families; a particularly positive role. Let’s just say I’m not a “fan” of religion. But Grinker was just sharing what these families shared with him, so I can’t fault him for that, though the way he brings all these religious experiences together in a particular paragraph did feel like he was drawing specific attention to it that I felt was unwarranted, and came off a tad pollyannaish / romanticizing on his behalf.

      Related to this complaint, there’s a continual and strong undertone of the notion that society’s attitude makes a significant impact on the reality of autism’s problems for the individual. He’s quite right; if a society shuns and hurts autistic people by sole virtue of their autism, of course society’s attitudes have a huge and at times devastating effect. Too, if a society specifically welcomes and finds a place for autistic people, then their lives are improved (even if only through better services and support, but also through employment possibilities for those capable of it). It is not surprising that he is so aware of the importance of societal attitudes – it is his area of expertise afterall. At times though I felt he was over-emphasizing it, in the face of the very real challenges autistic people face. Again though, I suspect I was adding too much of my personal experiences into what he was presenting; I get more than a little annoyed with people who think a change in society’s attitude is all that is required to make autism non-problematic (again, that’s over-romanticizing the reality).

      The fact is that Grinker does present the reality that the problems caused by autism are more than society’s attitudes towards it; both with his own story about his daughter and more generally. He specifically states (direct quote):

      “In the view of anthropologist Arthur Kleinman, a disease occurs when something is wrong with our bodily organs or systems, whereas an illness is the experience of negative or unwanted changes in our bodies or our ability to function in society. Autism is thus both a disease and an illness, and it cannot be otherwise.”

      So I decided to not mention either of those problems I had with the book – religion, and society as (perhaps a) dominant cause of autism’s problems for the individual – since in both instances he is really just presenting facts and experiences. My perception that he has perhaps overly focused on them is very likely coloured by my own experiences. He hasn’t made an objective error in his presentation of these experiences, and he does ameliorate those impressions at times, so it’s not really worth mentioning (unless someone asks me in a comment!)

  3. MJ says:

    The problem with the some of the ideas in this book are that they keep getting pulled out again and again to explain every increase. Sure, there is definitely something to the idea that better awareness and ability to recognize autism is playing a role in the increase. But at some point, as the rate of autism keeps going up with every passing birth year, that reason simply can’t explain the the increase.

    As the accepted rate (in the US at least) goes to 1 in 500 to 1 in 250 to 1 in 166 to 1 in 110 in about a decade, there has to be a point when we say that the increase cannot simply be that we are just getting better at seeing autism.

    And if you look at some of the data that is available (again in the US), you can see that the rate in the youngest children is even higher. If you extrapolate from the available data, the next number from the CDC is likely to be in the 1 in 80 range. In the state of Utah, the rate is already there – as of three years ago.

    With this last jump to 1 in 110, the CDC seems to have finally accepted the idea that autism is in fact increasing. But Roy Grinker in a recent interview was still putting out the idea that there has in fact been these level of autism all long and we just didn’t see it. And at the next increase he will (likely) be out there again, saying, see, we are getting even better at seeing it. And then probably at the next increase, we will be getting really good at seeing it.

    I know I oversimplifying the issues a little but the idea is that at some point we have to ask ourselves whether we really missed about 1 of of every 2 kids with autism at the last estimate and the estimate before that and the estimate before that or whether it is more likely that there are really more kids with autism.

    • Hi MJ,

      I think the most important message from the book in regards to the growing numbers of autism, is that we must be (and you do seem to be) aware of certain factors that increase the diagnostic numbers, independent of an actual increase in autism cases.

      In the book, Grinker concludes the question of numbers by bringing together the factors he discusses: The broadening of diagnostic criteria; diagnoses at increasingly young ages and newly diagnosed adults; more aggressive epidemiological methods; changes in education categories (administrative codes more generally) that affect some data; and the cultural factors that feed this “perfect storm of the autism epidemic” (direct quote).

      He’s quite right that to focus on the rise in autism numbers as independent proof of various causes of autism, is not helpful.

      As to the idea that any increase can still be explained away by all those factors, he is very open in the book about the fact that if we maintained the same definitions of autism and applied the same epidemiological methods to different points in time, then we would get more reliable data. If he has stated that the growth in numbers continue to be explained by the factors he goes through despite the use of the same scientific method and definition of autism, then that would seem dishonest to me (but I would very much doubt he would say such a thing considering him being so open about this issue in the book).

      It is quite clear that those factors are still at play – administrative codes continue to change, studies use different approaches, awareness increases, stigma decreases, etc. If someone wants to document a true increase in autism numbers – and not just autism diagnoses – they need to try to control for (or at least acknowledge) such things. A good study would do that anyway. What appears to happen is that studies look to measure the current numbers, then it’s often other organisations that use those numbers to argue for an increase by comparing it to other studies that haven’t used the same approach to answering the question. It is important to point out that discrepency.

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