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Competition Time

11 Jun

Icon Books sent me a review copy of the UK release of Unstrange Minds which is how I was able to review it so promptly.

However, this means I now have (count ’em) _three_ copies of Unstrange Minds – the galley Professor Grinker sent me, the US edition (never read it) and the UK edition.

Now I don’t need three copies so I’m going to give away the US edition (which is also personally signed by Professor Grinker – as evidenced by my pointing digit) to one lucky person (willing to post anywhere in the world).

grinker

So how to choose who to give it to?

Here’s a photo of the Green our Vaccines brightest lights. What I want you to do is caption it. The rules:

1) Nothing defamatory!
2) No swear words that begin with c or f
3) No reference to Evan McCarthy
4) Do as many as you like
5) Funny = good
6) No photoshopping the image
7) Post your entry either in the comment section of this post or in a separate post on your own blog and post the link to that here.

Go!

(click for bigger version).

Unstrange Minds – UK release

5 Jun

I wrote about Unstrange Minds in 2006 when it was first published in the US only.

Cover of Unstrange Minds

It gives me huge pleasure to note that Icon Books have now released the UK version (also available on Amazon UK.

I loved Unstrange Minds unreservedly. Professor Grinker sent me a galley copy to read before it was published and I read it in a couple of weeks worth of train journeys to and from my workplace. So absorbed was I that I very nearly missed my stop more than once.

Its a book about two things. Firstly it is a Fathers paen to his autistic daughter. The love and respect he has for his daughter permeates every single page. It is clear that he finds his daughter fascinating and wonderful. Through the pages, we do too.

Secondly, it is a book about the ‘autism epidemic’ or rather the lack thereof.

The shift in how we view autism….is part of a broader set of shifts taking place in society.

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.

One of the most fascinating parts of the book for me was Grinker’s exploration of autism in non-Westernised cultures such as South Africa and Korea. In some ways it was like reading about how autism was viewed here 20 years ago.

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.

That seems (and is) outrageous to us but 20 years ago I can easily imagine this happening in the West. One only has to look at the recent experiences of Alex Barton to see how quickly the West can regress to barbarism.

I can’t recommend this book highly enough. Go buy it now.

David Kirby is right (and wrong)

6 Apr

David Kirby has an excellent title for his blog post: ‘CDC Has Lost Control of the Autism Argument’.

I happen to to think he is 100% gold-plated correct. In fact I would go even further than that – the CDC, the FDA and the AAP have become, on this issue, little short of a laughing stock. They have bungled, mismanaged, failed to address and not known how to retort at just above every step of the process.

Controversially perhaps I think a lot of it has to do with the bureaucratic nature of these monoliths – they need to reform their way of working. They’re slow and outdated in their PR and media handling. That is not to say that the people working within these systems are terrible useless people – clearly they are not – but they operate within a system that cannot seem to effectively communicate the scientific truth behind the various vaccine hypotheses.

And now we truly _do_ have various vaccine hypotheses. Once it was ‘….nothing more than mercury poisoning.’. Then it was the MMR too. Then it was a combination of both. Then it wasn’t _just_ mercury in vaccines it was all the other ingredients too.

Now we have another twist: the mito/autism/vaccine hypothesis which I have no doubt has sent scores of parents all over the Western world forking out for yet another set of tests and will no doubt prompt yet another set of questionable treatments repackaged and rebranded for autism.

I think its worth while remembering at this point that, despite the furore over the last few weeks, one thing has not changed: *the science* .

All the talk shows and Larry King appearances and cloak and dagger leaked reports are all very exciting and good blogger fodder for people like me and David but the bottom line is this: no new science has been added to the equation regarding any vaccine/autism hypothesis. So, when I read the Larry King transcript and saw David snapping ‘the debate is over!’ I raised an eyebrow as I couldn’t recall any new science being brought along that night (or any other night) that had caused the debate to be over.

Anyway, back to David’s HuffPo entry. Now, I’ve swapped very courteous emails with David Kirby and whilst I have also posted quite angrily about him too I think he cares about people. Which is why when I read a paragraph such as the following I get perplexed. Here’s David:

A recent government decision to award nine-year-old Hannah Poling taxpayer dollars for her multiple vaccine-induced autism, has left parents anxious and alarmed….

A recent government decision. Hmm. Lets see what the Special Masters who are overseeing the Autism Omnibus (of whom Hannah Polings case was until recently a part of) said:

….reports have erroneously stated that the Office of the Special Masters has recently issued a “decision,” “opinion,” or “ruling” concerning the issue of whether a Vaccine Act claimant’s autism symptoms were caused by one or more vaccinations. The OSM has not issued any such decision, ruling or opinion.

No decision.

And David Kirby also refers to Hannah Poling’s ‘multiple vaccine-induced autism’. Lets see what the OSM says:

this court has issued no decision on the issue of vaccine causation of autism

But maybe by ‘government’ David means the HHS? Not the courts? If thats so, can David – or anyone else – point out to me where in any HHS statement they note that have decided to award Hannah Poling money for ‘vaccine-induced autism’?

Or maybe David means someone else when he refers to ‘government’?

And lets also be clear. Not only has the OSM _nor_ the HHS referred to ‘vaccine-induced autism’, neither has any aspect of the medical literature written about Hannah Poling (or any other claimant).

So yes, I find David’s over-exuberance perplexing on occasion. I am also concerned that paragraphs such as the above are muddying waters that need to be crystal clear right now. We serve no one by misleading them either intentionally or not.

Paul Offit causes a stir

1 Apr

On 31st March, Dr Paul Offit wrote an op-ed piece for the New York Times entitled Inoculated Against Facts in which he discussed the recent Poling situation.

In response to this, David Kirby wrote a blistering response entitled Lies My New York Times Told Me (Or, Why Trust a Doctor Who Says 10,000 Shots Are Safe?).

Offit says:

An expert who testified in court on the Polings’ behalf claimed that the five vaccines had stressed Hannah’s already weakened cells, worsening her disorder. Without holding a hearing on the matter, the court conceded that the claim was biologically plausible.

To which Kirby responded:

no one “testified in court” in this case, as confusingly stated by Dr. Offit, who also writes that, “Without holding a hearing… the court conceded.”

My take on what Offit said was that any document submitted as part of a legal process must, by definition, form part of a courts records and thus be considered testimony. I think there’s a difference between ‘heard in court’ (heard as part of a legal proceeding) and ‘a hearing’ (discussed in open court)

Kirby also says:

It was a medical concession, not a legal decision. Dr. Offit and the New York Times know this.

Its also (as I understand it) part of the process that the Special Master could’ve refused to accept the so-called concession. This makes the fact they did a legal decision. The Poling’s could’ve elected to have their daughters case heard in a civil court (I think) in which case they really would’ve been held to a medical/scientific standard of proof. They chose not to do so.

Kirby goes on:

This statement, too, is misleading: “Even five vaccines at once would not place an unusually high burden on a child’s immune system.”……Hannah received five shots, but nine vaccines.

Which, to be fair to Dr Offit is exactly what he said:

In 2000, when Hannah was 19 months old, she received five shots against nine infectious diseases.

I think this is merely a semantic misunderstanding as to what constitutes ‘one’ vaccine.

Kirby goes on:

More importantly, Dr. Offit’s statement contradicts the second HHS concession (for epilepsy) in the Poling case, to wit:

The cause for autistic encephalopathy in Hannah “was underlying mitochondrial dysfunction, exacerbated by vaccine-induced fever and immune stimulation that exceeded metabolic reserves.”

Now, lets be honest – nobody aside from David Kirby has actually _seen_ this second HHS ‘concession’. I can’t help but note that the part that Mr Kirby quotes from this second report does not contain the phrase ‘autistic encephalopathy’ (and what exactly _is_ ‘autistic encephalopathy’?). I also think its a little unfair to expect Dr Offit to be a mind reader and know what an unreleased report says.

I further think that in a piece that asks why we should just trust, Mr Kirby (with all due respect to him) asking us to do the exact same thing is a little incongruous.

We really need this issue sorted out by either releasing this document that directly ties a diagnosis of autism _directly_ to vaccines, or by applying the same rules to everyone.

Mr Kirby then goes on to challenge Dr Offits most (in)famous statement:

“Our analysis shows that infants have the theoretical capacity to respond to about 10,000 vaccines at once”

This is slightly disingenuous as this really has no bearing whatsoever on the Poling case. Its also – as stated by Dr Offit – a _theoretical_ scenario. No one is seriously suggesting any infant has 10,000 shots. The paper from Dr Offit used this calculation to respond to the idea that vaccines can overwhelm the immune system.

And lets be clear. This is science. Good science. To the best of my knowledge no-one has refuted it in any reputable journal. If anyone has an issue with the overall idea (vaccines not overwhelming the immune system) or the maths involved, then they should submit it to a reputable journal for peer review.

However, one of the most disturbing aspects of this turn of events is the response to Dr Offit’s piece on the EoH Yahoo Group. I should note that David Kirby has _no control or ownership of this group_ before I continue.

Within a few hours of Dr Offit’s piece being published, Ginger Taylor took it upon herself to send Dr Offit’s phone number to the EoH group at large, as part of an email conversation she had had with Dr Offit. Thus drew a number of responses from her list mates such as:

Oh no….. His phone number on EOH? Lord help him!

Quite. Although the group moderator was quick to ask people not to harass Dr Offit, he stopped short of deleting this very ill-considered post.

Lets not forget that Dr Offit (and his children) have been the subject of severe harassment from those who believe in an autism/vaccine hypothesis:

….as Paul Offit, a vaccine expert who served on the committee, tried to make his way through the crowd, one of the protestors screamed at him through a megaphone: “The devil—it’s the devil!” One protester held a sign that read “TERRORIST” with a photo of Offit’s face. Just before Offit reached the door, a man dressed in a prison uniform grabbed Offit’s jacket. “It was harrowing,” Offit recalls.

….

He has since received hundreds of malicious and threatening emails, letters and phone calls accusing him of poisoning children and “selling out” to pharmaceutical companies. One phone caller listed the names of Offit’s two young children and the name of their school. One email contained a death threat—”I will hang you by your neck until you’re dead”—that Offit reported to federal investigators.

Knowing this, why Taylor saw fit to do this at all is puzzling. However, when she was asked how she felt about communicating with Dr Offit, she also saw fit to comment:

The whole thing actually creeped me out and I just dropped it.

My personal opinion is that a considered reply from Dr Offit to Taylor which included a friendly invitation to contact him again is not creepy at all. What _is_ creepy (to me) is publishing the phone number of a man who has been subject to vicious abuse – as have his children. To me, it is irresponsible in the extreme.

Safe Minds and David Kirby

5 Jul

Suspicions have been circling for a long time that there was more than just coincidence to the timing of writing and publication of Kirby’s Evidence of Harm. Those suspicions were enhanced for me when it became clear that a lot of Kirby’s associations with certain autism/anti-vaccine groups such as the National Autism Association were on a financial footing.

The ‘official’ story regarding the writing of Evidence of Harm, as reported by Kirby himself, was that Kirby was casting about for something to write about of book length and had been approached by several autism parents who wanted to share their beliefs that vaccines had made their kids autistic. According to Kirby, he was skeptical and unsure about whether to proceed with it or not. What made up his mind apparently was seeing a news report that a politician had managed to attach a no fault rider to a bill passing through Congress, absolving vaccine makers of any legal responsibility.

However, I don’t believe him. Up until recently, that belief was simply a belief. Rumours circulated that Sallie Bernard of Safe Minds was listed as the domain controller (i.e. she’d bought and paid for) the domain evidenceofharm.com. I emailed her to ask her one way or the other. She refused to answer that question. Kathleen Seidel has asked David Kirby that question. He refused to answer.

Why does it matter? Because Kirby claims to be impartial in this debate. His reviewers claim he ‘walks the middle line’ in his book. that his account is ‘even handed’. I would like to know how someone who has an established financial relationship to one major autism/anti-vax group can possibly be impartial. Would the NAA continue to fund Kirby’s website if he said he didn’t think thiomersal caused autism? I doubt it.

Turning our attention to Safe Minds, we can look at their records – records they must supply be law as they’re a non-profit organisation – and see exactly what they have financed. You can access these records via the orgs IRS Form 990:

Form 990 is an annual reporting return that certain federally tax-exempt organizations must file with the IRS. It provides information on the filing organization’s mission, programs, and finances.

Attached is Safe Minds 990 for 2005. It has some interesting details in it.

If we look at line 43, it has a listing amount of $99,196 for ‘Professional Fees’ expenses placed under the ‘Program Services’ Category.

This means that they paid people they considered professionals almost $100k to provide services to their programs. On page 15 of this same document they go into detail about what these services are.

…..THE BOOK “EVIDENCE OF HARM, MERCURY IN VACCINES AND THE AUSTISM EPIDEMIC: A MEDICAL CONTROVERSY” WAS RELEASED IN 2004 AND SAFEMINDS PRESIDENT, LYN REDWOOD, WAS FEATURED ON THE MONTEL WILLIAMS SHOW ALONG WITH AUTHOR, DAVID KIRBY. THIS IMPORTANT BOOK EXAMINES BOTH THE PERSONAL STORIES OF FAMILIES AND THE UNFOLDING DRAMA IN THE COURTS AND HALLS OF CONGRESS.

This is listed as a ‘Program Service Accomplishment’.

So what can we conclude? To me, this is pretty damning evidence that David Kirby was paid by Safe Minds to write Evidence of Harm. It certainly ties in with Kirby’s other financial benefits from the NAA. So much for impartiality.

I have some questions for Safe Minds and David Kirby.

1) Did David Kirby receive any kind of financial incentive from Safe Minds or NAA or any of their boards prior to writing Evidence of Harm?
2) If so, how much?
3) If not, please explain the 990 form from 2005 above and tell us exactly what the information in it means.

Portia Iverson – Strange Son

4 Mar

This isn’t a book review.

This is the the unfolding story of some book reviews about Portia Iverson’s new book ‘Strange Son’.

Ms Iverson is a founder of CAN (Cure Autism Now) and wrote this book about her own son Dov and another autistic boy – Tito Mukhopadhyay. Here’s how an author I once had a great deal of respect for described this book:

Love introduced two mothers, one who lived in India and the other in the United States. Their passion to seek health for their children, both afflicted by autism, brought the two women across continents and over oceans. Each stimulated the other with her fervor to find medical breakthroughs. Their story is exciting and uplifting.

Amazingly (or not so in this day and age) the first customer review is written by Tito Mukhopadhyay, one of the ‘strange sons’ who was ‘afflicted by autism’. Here’s his review:

I am Tito Rajarshi Mukhopadhyay.

The book ‘Strange Son’ felt like a ‘slap’ on my face from someone who mother and I trusted the most.

Overstimulation and puberty stage can be difficult for many like me. But getting recorded in a way like that, ‘hurts more than my Autism’.

‘May the writer find whatever she seeks’.

By the way, I ‘hand-write’ and communicate/write my books (the Mind Tree, Gold of the Sunbeams, Beyond the Silence). Next year my new book (untitled) will be out, which will describe my sensory conditions in detail, so that other authors may be more equipped before writing about them as ‘observers’ if they watch the ‘show’.

Regards to one and all.

Tito Rajarshi Mukhopadhyay

Here’s a young man who patently feels that he was used, presumably as fodder for Ms Iverson’s publishing career.

Later on, in a separate review, Tito comments:

Honest from the author’s perspective. Perception is a tricky business. But some honesty hurts and Mutilates the trust forever.

Indeed. I would agree with Mr Mukhopadhyay that Ms Iverson’s perception of him is probably flawed and coming from her odd opinions regarding the nature of autism. The following is from a review by a Lisa Helt:

I can’t believe anyone could write such cruel things about any human being, much less a child with a disability. She uses the words, “beast-like”, “alien”, “possessed by a demon”, “like a wild beast”.

The next reviewer in this thread is Portia Iverson herself who says:

I never use the terms: “beast-like”, “alien”, “possessed by a demon” to describe my son in my book. This inaccurracy and others make it clear that this reviewer has not actually read the book.

What Iverson fails to note is that Ms Helt did not claim these comments were specifically about her own son, Dov. No, she reserved these words for the foreigner. And as Ms Helt points out, she certainly _did_ use them:

Actually, you did use these terms. On page 129,”When I left their apartment that day I felt as if I’d glimpsed into the mind of an alien being.”; Page 116, “‘Tired’ was hardly an apt explanation for the extraordinary scene we had been witnessing … where food was flying in every direction, accompanied by his odd grimacing sounds…”; Page 117, “I emailed Tito that same night and asked him why he behaved like that at the table, grabbing food and acting like a wild beast …”; Page 126, “He dashed through the house and raced toward the fridge, the first stop on the terrible circuit he could not break free of. He flung open the refrigerator door and wildly rifled through its contents… ‘You’ll never get a publisher with this kind of behavior!’ I commented in a low voice”; Page 127, “Now it seemed as if Tito were possessed by a demon.”;

As commenter Anne Bevington states later on:

An alien, a wild beast, possessed by a demon … the author was writing about Tito, not Dov. I’m sure Tito has brought in a lot of attention and money for the author’s organization, Cure Autism Now. This is the thanks he gets. The author owes Tito an apology, at the very least.

Another reviewer, Linda Lange comments:

One thing I’ve gathered from this book is that the author believes whole-heartedly that calling others strange (including her own son, and those with autism) is okay with her. However, she draws the line at others who question strange aspects of her story. Interesting phenomena which deserves contemplation, especially as it relates to the contrast of the journeys of those described in the book. Conversely, those who are being called strange in this book don’t seem to have much of a say on the matter. Truly, strangely upsetting.

Indeed. I can’t see myself shelling out money on this book.

There’s a number of lessons to be learnt from this. Number one, this is the age of the internet Ms Iverson, don’t expect to remain free of criticism from the subject matter of your books whom you have clearly offended and abused the trust of. Secondly, lying in retorts to reviews makes you look silly.

But thirdly, and most sadly of all, you will get away with it. Here’s a section of the review from one Barbara Fischkin:

As for those of us who are getting some flack for saying we want to “cure” autism and give autistic kids “souls”: Speaking for myself, not Iverson, I think this is the shorthand of busy mothers who do many other things. Curing a child does not mean you eradicate him or her. It means you take the best, and perhaps some of the worst, that he or she demonstrates as a human being, and help him or her to show that to the world in the form that is the most comfortable for that individual. My own son, now 19, would, I am convinced, prefer to speak instead of grunt his very strong opinions. He would prefer to waste less time worrying about his bodily functions and the inappropriate way in which they have a mind of their own. And yes, he would like his old soul back, the one that was killed….

Here we have the continuing example of a parent who believes that they can not only speak for, but unfailingly know the mind of, their autistic kids. Ms Fischkin cannot even take the trouble to look up and see Tito Mukhopadhyay’s thoughts on those who would presume to speak for him:

Perception is a tricky business. But some honesty hurts and Mutilates the trust forever.

Note that Fischkin believes her son’s soul is currently dead. Killed. This dehumanisation is a direct consequence of the thought processes outlined in Strange Son.

Update

Read more from Autism Diva and MOM-NOS and the Autism Demonized team blog.

Two autistic people speak

19 Dec

I wrote recently about how positive a year it had been (or PosAutive if you prefer) and I’m pleased to say that its not over yet. Two autistic young adults added their voices to the autistic community. I want to write a little bit about both of them but before I do you should know that I am only going to name one of them. The other one’s identity I will not discuss. It’ll be clear why, I hope.

First, is best selling author Susan Senator’s son Nat who has just launched his own blog. I encourage you to go and leave a nice comment for Nat to encourage him in his fledgling blogging. Maybe one day he’ll be an author as respected as his mum.

The second person is more difficult to discuss. Instead I’ll relate the events in a hypothetical way. I don’t want to discuss this person by name as I don’t want any repercussions going their way.

Lets imagine that there was a Yahoo group that enjoyed talking about a certain book to do with the mercury/autism hypothesis. Lets assume that that group had a track record for less than pleasant behaviour towards autistic people.

In our hypothetical situation, the adult child of a person who was both a regular on this Yahoo group and also a high up member of a prominent group that believes that vaccines cause autism, started to post on this group. Nothing particularly remarkable until one read what it was that this adult child was posting to this group. It was (hypothetically speaking) a copy of Autism Hub blogger Joel Smith’s essay on living with autism describing it as ‘really good’ and Joel’s other essay (you want to take away my window) which starts:

I am autistic. I’ve always been autistic, and I always will be autistic. Autism is part of who I am, just as my sense of humor and my emotions are part of me. I like who I am, even my autistic part.

In this totally hypothetical example, several parents responded, shall we say, less than gracefully. One of the best of their members told this person:

…forget about posting junk here that wants to make autism out to be some beautiful thing, It isn’t.

Another person who might hypothetically blog for the Huffington Post under the ‘fearless voices’ group said:

Knock, F’ing Knock. Oh, sorry, I was looking for my daughters……Have you seen my beautiful girls. I will search for them until the DAY I DIE even if I have to bloody my arm as I put a fist through your window.

Hypothetically, it seems to me that these ‘fearless voices’ need a short, sharp lesson in manners and respect, but be that as it may, I like imagining this hypothetical situation where the adult child of a high up member of a vaccine/autism group is posting what they would only consider pro-ND material to this particular group.

I hope both these voices carry on speaking. Maybe they can even make the truly ignorant listen.

Unstrange Minds

17 Dec

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.

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