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Prevalence of Autism Spectrum Disorders in a Total Population Sample

9 May

A long-awaited study of autism prevalence in Korea came out today in the American Journal of Psychiatry. Most of the information we have about autism prevalence comes from the US, the UK and Europe, so many were looking at this as the “Korean Study”. It is that, and very much more.

The title of the study is Prevalence of Autism Spectrum Disorders in a Total Population Sample. I expect the study will be gathering quite a lot of press as the results are quite remarkable. For one thing, the autism prevalence is estimated at 2.64%. That’s right, over double the current estimates in the United States and the U.K.. For another thing, most of the prevalence is for autistic students who were previously unidentified and unsupported.

Unfortunately, I was unable to obtain permission to review the article pre-embargo for discussion here on the Left Brain/Right Brain blog. Instead, I wrote about this for the Autism Science Foundation as Prevalence of Autism Spectrum Disorders in a Total Population Sample. There you will find a more thorough review of the paper, complete with questions and answers with team member Roy Richard Grinker of George Washington University. The study was led by Dr. Young Shin Kim of Yale, and includes an international team:

Young Shin Kim, M.D., Ph.D., Bennett L. Leventhal, M.D., Yun-Joo Koh, Ph.D. , Eric Fombonne, M.D. Eugene Laska, Ph.D., Eun-Chung Lim, M.A., Keun-Ah Cheon, M.D., Ph.D. ,Soo-Jeong Kim, M.D., Young-Key Kim, M.D., HyunKyung Lee, M.A., Dong-Ho Song, M.D., Roy Richard Grinker, Ph.D.

Again, the full post can be found at the Autism Science Foundation blog.

Researchers track down autism rates across the globe

8 Apr

The Simons Foundation blog, SFARI, has always had a good quality of articles. Lately it appears to me that the frequency of articles has increased. One recent article hits a subject that has been a focus of mine for some time: prevalence estimates and how they vary by culture and geography. In Researchers track down autism rates across the globe Virginia Hughes talks to a number of researchers working on expanding autism prevalence studies to more countries. Outside of the US and the UK, autism prevalence studies are somewhat rare. Until fairly recently, prevalence estimates outside of the US and Europe were basically nonexistent.

Ms. Hughes starts with this introduction:

In urban areas of South Korea, some families of children with developmental delays will go to great lengths to avoid a diagnosis of chapae, or autism. They think of it as a genetic mark of shame on the entire family, and a major obstacle to all of their children’s chances of finding suitable spouses.

The stigma is so intense that many Korean clinicians intentionally misdiagnose these children with aechak changae, or reactive detachment disorder — social withdrawal that is caused by extreme parental abuse or neglect.

This won’t come as a surprise for those who have read Roy Richard Grinker’s Unstrange Minds, where Prof. Grinker explores how autism is viewed in various parts of the world, including South Korea.

Prof. Grinker is interviewed, as is his collaborator Dr. Young Shin Kim, and Dr. Eric Fombonne.

Autism prevelance work has been performed or is ongoing in Mexico, South Korea, Brazil, India, South Africa and Oman. Since autism isn’t diagnosed through a biological test, variations in culture can have a significant impact on the test methods.

Ms. Hughes notes:

Language and culture may also affect the way this research is carried out. For instance, the Korean language uses an extensive array of suffixes that denote the relationship between the speaker and the subject. South Korean children with autism have trouble using these social markers, but the Western-based standard tests of autism, such as the Autism Diagnostic Observation Schedule (ADOS), don’t test for this.

Similarly, Grinker points out, healthy children from non-Western cultures may display a trait that ADOS counts as a symptom of autism. In South Korea, for example, making eye contact with an adult is not socially appropriate.

“This is why it’s pretty useful to have [anthropologists] who can translate diagnostic instruments that were designed in one culture and used in another,” Grinker says.

Rather than cut and paste the entire article I will point you back to SFARI for the full piece. It is well worth reading.

Blogging IMFAR: Wrap-Up Notes

23 May

One of the things I wanted to do in blogging about IMFAR, was try to provide a bit of a wrap-up of my experience there in Philadelphia this year. Since it was my first time attending an IMFAR, and I really had no idea what to expect ahead of time, I figured it might be useful to jot down some overall notes retrospectively.

First and foremost, IMAR is a scientific meeting. There is no shortage of introduction to what is out there in current autism research. This began with Wednesday’s pre-meeting press conference. It was there, that the press would learn about several selected abstracts (apparently thought to be worthy of media attention): the University of Rochester’s (Dr. Susan Hyman) negative GFCF study results, the Kennedy Krieger Institute’s (Dr. Brian Freedman) debunking of the 80% divorce rate claim, and others such as, landmark genetic studies, infant sleep fMRI as potential early diagnostic tool in the future, and social/educational intervention strategies that demonstrate the importance of peer involvement. Each of the study authors presenting their work to the press, spent about 5-10 minutes giving the highlights and taking a few questions, but in reality, each presentation was barely a thumbnail sketch of what the research was about and perhaps a minute of discussion about potential real world significance of the findings. You can read more about the items that caught my attention in the press conference at Blogging IMFAR: Opening Press Conference and GFCF Diet Trial Results and Blogging IMFAR: Autism And Divorce Debunked, Among Others.

Following the day of the press conference, IMFAR was off and running, with full daily schedules of presentation sessions, and poster sessions running the majority of the day (one floor below where the presentation sessions were taking place). On one hand, I suppose the science presentations could seem fairly frustrating to many. Like the press conference, the oral sessions presentations are given on a fairly tight schedule, and often contain little more than an introduction, a few minutes of methodology discussion, a quick look at statistical results, and time for one or two questions – then it’s on to the next, which might even be something only very loosely related at times.

For a typical parent, I think it’s quite possible they’d find the whole format approaching “tedious-to-learning” much of the time, with only an occasionally very interesting or very well-presented piece of research. Don’t get me wrong, I wouldn’t want detract from the likely importance of researchers having an open venue to share ideas with each other, but for me, there are only so many shotgun presentations you can listen to, or posters you can look at in one day.

On the other hand, IMFAR is a place where it seems ridiculously easy to get the big picture quickly, and even talk with expert researchers in the field of autism science if you are so inclined. It’s hard not to catch the what of what’s currently taking place in autism research world, as it’s everywhere – in the program, in the posters, and in the discussions. As an example, if one wanted to learn what’s taking place in autism research that’s using brain imaging, whether looking at language response and differences in infant siblings of autistic children, or looking at the potential impact of some specific intervention on brain funtion, researchers studying just those kinds of things are at IMFAR presenting and discussing their research. From what I saw, one can attend the relevant presentations, and then visit with researchers later on – I saw this occur on several occasions, with researchers like Eric Courchesne (University of California, San Diego). “Accessibile” is word that is probably a pretty good way to sum up my general thoughts on the science at IMFAR. while the format can seem very dry, especially to someone like myself (who didn’t arrive with a specific scientific field of interest that I was dying to scout out), the science and the researchers do seem really accessible.

Which brings me to what I thought was an important impression of IMFAR. The scientists really do seem accessible – willing to spend time for those with quesitons, and willing to provide explanation and lay translation where appropriate. On the first full day at IMFAR, I have to admit that I really didn’t know where to start. How was I ever going to explore all the science, and then distill that down to something digestible in size, yet explanatory of the trends in autism science? I was so fortunate to have the opportunity to meet with Dr. David Mandell. Besides being a local Philadelphia researcher, he was the Scientific Program Chair for IMFAR this year. And I could not be more appreciative of the time he gave to me (and LBRB readers), in sitting down to explain the trends in autism research at IMFAR – and he’s probably one of the best possible people to see and understand those trends, as he read every one of nearly a thousand abstracts accepted at IMFAR this year. If you want the inside scoop on the science at IMFAR, as well as an opportunity to simply get to know the thoughtful Dr. Mandell a little better, it can be found at Blogging IMFAR: Excerpts Of An Interview With David Mandell, ScD.

Speaking of thoughtful autism researchers, while at IMFAR, I literally ran into (interrupting his cell phone conversation while on an escalator) Dr. Roy Richard Grinker, professor of anthropology and human sciences, autism epdemiologist, author of the book “Unstrange Minds”, and wouldn’t you know it, a jazz pianist and marathoner too! Dr. Grinker was gracious enough to sit down with me for coffee, and share a little more about why he was at IMFAR with LBRB readers. You can read the interview at Blogging IMFAR: Meet Roy Richard Grinker.

At this point in my notes, we’ve arrived at midday Friday. And it as midday Friday when I see what I consider the most interesting science. As a recipient of a travel/attendance grant (that partially funded my trip to IMFAR) from the Autism Science Foundation, I was also invited to attend their “Science and Sandwiches” luncheon. It might be tempting to think I was attracted simply for the free food, but the sad truth was, that I had eaten a very late breakfast and wasn’t even hungry at the time of the luncheon. During the “Science and Sandwiches” lunch, each of 6 pre-doctoral students presented an overview of their research plans. These are pre-doctoral students who applied, and in turn, the Autism Science Foundation selected, to fund their research directly. They all seemed fairly interesting and unique, ranging from researching social conversation rules among ASD kids and infant emotions measurement, to very specific mouse model genetics/pharmacological experiments, to epidemiology. Yes, epidemiology. It might seem surprising that a young autism science advocacy org like ASF, or anyone for that matter, would fund epidemiology. I can’t help but think that field is already maturing to some degree in the U.S. I thought to myself, other than potential minority underrepresenation, what kind of breakthroughs in scientific understanding could we really get from epidemiology in the U.S.? I mean, we already know that we’re probably finally very close to what is a pretty stable 1 in 100. What else is there?

That’s when we were introduced to Matthew Maenner. Maenner is a pre-doctoral student of the University of Wisconsin, Madison (working under the mentorship of Dr. Maureen Durkin), who proposed, what to me, looks like a very interesting take on autism epidemiology with his research titled, “Phenotypic Heterogeneity and Early Identification of ASD in the United States”. He asked the luncheon group (of what looked like about 60 attendees), about how many possible combinations of the individual DSM diagnostic criterion can result in an ASD diagnosis. You know, if one looks at all the possible permutations of: “(I) A total of six (or more) items from (A), (B), and (C ), with at least two from (A), and one each from (B) and (C )” and the criteria for Asperger’s and PDD-NOS from the DSM IV-R, how many many combinations are there? It turns out there are 616 (I think I wrote that down correctly). He had a fascinating cloud-graph-type illustration of this (there’s probably a good technical term for this), that looked like a spiral galaxy – the point being that diagnostic criteria steer categorization to a shared core, but at the same time, there are numerous arms extending in several directions. He explained how he intended to look at the CDC’s ADDM data to begin to answer questions about the basis for the landscape of real world diagnoses compared to the actual possibilities described within the diagnostic criteria. Like a fool, I assumed that the ADDM data, like much of published autism epidemiology, tended to be focused on fairly simple prevalence, even dichotomous in nature (Autistic – yes/no, Asperger’s – yes/no, PDD-NOS – yes/no, X percent of all ASD’s = Autistic Disorder, etc.). Also, like a fool, I asked about him about this with something to the effect of, “In assuming the CDC’s ADDM data doesn’t have the resolution to go beyond diagnosis results, and into the individual combinations of criteria that result in those diagnoses, how are you going to even look at answering that question your research is about?”. He politely responds, explaining that, in fact, the CDC’s ADDM data does have this resolution. My assumption is way wrong, and this is an “Aha!” moment for me. We have tons of what is probably pretty good data available from the CDC, and it seems, to me, that no one has looked at it in quite this way before now.

So here’s my take on this ASF-funded doctoral student’s proposed research – he may be digging into something much more descriptive and potentially useful to the biological and educational sciences with respect to autism spectrum disorders, than has been done so previously (that I am aware of). If there’s epidemiology that can quantitatively describe the distribution of characteristics that result in ASD diagnoses, biological, and even educational research may have a leg up on being meaningful. As an example, suppose that this epidemiology determines that a certain percentage of ASD diagnoses include selection of the C – 4. “persistent preoccupation with parts of objects”. With real numbers, biological research may have a starting point to evaluate associations of differences in brain structure or function with respect to this characteristic. With real numbers, perhaps the success of specific educational strategies (that take advantage of this specific knowledge) can be meaningfully evaluated with more individualized approaches. Here’s the bottom line as I see it: Matthew Maenner is taking a solid step towards building understanding of the variation that occurs in autism spectrum disorders. It’s possible, if not likely, that his work could contribute to entirely new and much more individualized directions in other autism research. The days of any notion of singularity in etiologic origin of autism are long gone (in favor of complex combinations of numerous factors). Here’s a researcher who, in my opinion, understands that and will take steps towards building real understanding by looking at that distribution of variation. It wouldn’t surprise me in the least if “Matthew Maenner” is a name associated with the more interesting and useful autism epidemiology in the future.

So there you have it. That was my couple of days at IMFAR: an early look at some of the “newsworthy” science, an opportunity to learn much more about current trends in autism research from a hard-working scientist (the IMFAR Scientific Program Chair, Dr. David Mandell), a chance to sit down and chat with a very thoughtful researcher and author (Dr. Roy Richard Grinker), as well as first-hand look at some new research direction in graduate programs. All in all, it was a pretty interesting couple of days.

I’d also like to take just a minute and thank the Autism Science Foundation for partially, yet generously funding my travel (as a parent who blogs) to IMFAR. I had complete freedom to check out and write about whatever I wanted to, and it wouldn’t have been possible without their financial assistance.

(Disclosure: my attendance at IMFAR was funded in part, by a travel grant from the Autism Science Foundation.)

Blogging IMFAR: Meet Roy Richard Grinker

22 May

I had a neat opportunity here at IMFAR. Last night, as I was standing on the long escalator that traverses 3 floors from the IMFAR convention area to the lobby below, I glanced backwards to peek at the person behind me who was having a pretty animated conversation on a cell phone. His name tag read, “Roy Grinker”.

He noticed the glance (which was probably more like a bit of a stare, not too inconspicuous I suppose), and politely paused his conversation long enough for me to interrupt, introduce myself, and invite him to coffee this morning. He accepted.

Most LBRB readers will know Dr. Grinker as the author of “Unstrange Minds” and as a professor of anthropology and human sciences at The George Washington University. He continues to conduct autism research, and he has a role (that we’ll learn a little more about in a minute) at IMFAR too.

He arrives to coffee right on time, and is every bit as friendly as he appears in the pictures that often accompany articles about him online. He sits down to chat with me, and LBRB readers, so…

Meet Roy Richard Grinker, PhD

LBRB: Is it correct to say that your interest in autism research is with epidemiology?

RRG: Yes, my focus has been on epidemiology, but also on doing qualitative research on how culture influences the prevalence and recognition and management of developmental disabilities.

LBRB: Tell us a little more about what you mean by how culture influences those things. Is that willingness to diagnose, etc.?

RRG: Well, we don’t know very much, right now, about autism in other places in the world. It’s, at this point, an assumption that the onset, the core symptoms, and the course is universal. We don’t know, because we don’t have data from other cultures. For example, let alone phenotypes, we don’t have prevalence data for any country in the entire continent of Africa, any country in South America, any country in Asia other than Japan (that includes south Asia), and basically, in the international realm of autism research, it’s wide open.

LBRB: So what specifically brings you to IMFAR?

RGG: I came to the meeting this time primarily to meet and talk with people from other countries, where we don’t know much autism. And we have people here from all over the world. The reason that I’m wearing this button…

[He’s wearing a button with the IMFAR name and logo that reads, “DIVERSITY AMBASSADOR”]

…is to be part of IMFAR diversity.

LBRB: International reach?

RRG: International reach. It’s not so much like the American “diversity”, it is international diversity. We reach out to all the different countries, and as an example, there’s one autism researcher here from Nigeria. With this, he knows that I’m interested in meeting him. He can feel comfortable to just walk up and talk to me, or have coffee. There are a lot of people here from other countries who may not know anyone here.

LBRB: So you’re here for that purpose?

RRG: Yes, and to talk with other people at the meeting.

LBRB: Let’s switch gears a little. What about “American diversity”? What’s your take on the science about that, at a meeting like this?

RRG: In terms of diversity, I’m really inspired, inspired because, when a diversity committee meeting was held, there were about sixty people there. Most them are actually in the U.S., working in the U.S., and are interested in the barriers to care, and the obstacles to services within minority communities.

LBRB: That sounds like it could be interesting in and of itself.

RRG: We know that the age of diagnosis for minorities in the United States is significantly higher than the average age of diagnosis for non-minorities, and that means that they’re getting services later.

LBRB: What does the research science say about this?

RRG: Research supports the premise, one, that outcomes are better if interventions are earlier, and two, epidemiologic data supports the findings that African-American and Latino children are diagnosed later, and receive fewer services. There are data (but not published data) that I’m aware of, that show that even Latino children who are insured, don’t always get services as frequently as others. It could be that they were referred, but don’t take advantage of them, or perhaps there are other structural barricades; like they have insurance, but they also have three jobs, or they live far away from the services. We really don’t understand what all the barriers to uptake of care are, in minority populations. One of the projects I’m working on now is an NIMH-funded project to look at early identification of autism in two communities where there are virtually no autism services delivered.

[Dr. Grinker did provide a little more detail about one research project in southwest Florida, among migrant worker families, as well as a project in South Africa, from where he’d recently returned].

LBRB: So these are your real research interests?

RRG: There are three strands to my research. One strand is this work I’m doing in southwest Florida and South Africa. The second strand is the continued work on the prevalence of autism in South Korea, and we hope to report the results soon there, it’s been a long study – nearly thirty thousand children (the denominator in the sample). The third strand is my book writing – I love to write books.

LBRB: Tell us more about “Unstrange Minds”.

RRG: It just came out this week in Portuguese (so it’s available in Portugal and Brazil), and it really means a lot to me to be able to provide a message that people find uplifting. The thing is, that sometimes when people talk about my book, they focus on the argument about epidemic. And I think that’s important, and I spent a lot of time in my book going through the various reasons why autism diagnoses have increased. But, for me the most important part of the book is that it doesn’t present having a child with autism (or relative with autism) as a tragedy, or something that’s horrible and devastating. Rather, it’s a life experience which is distinctive, and can be incredibly rewarding. I take that positive perspective. I’m invited to give talks, occasionally. Sometimes I’ll give a talk somewhere, and I’ll ask why they invited me. Frequently the answer is, “because you’re not angry”. There are plenty of people out there who give public presentations that have to do with their anger – the anger that the community is not answering their questions, the anger that the services aren’t there, anger that their theory of causation isn’t taken seriously. I guess some people just want to hear somebody who’s got a more positive perspective, without being a Pollyanna, and I think that’s what I offered in the book.  To me, that’s the most rewarding thing.

LBRB: Can you give a personal scoop to Left Brain/Right Brain Readers? What do you like to do in your free time? Do you have any hobbies?

RRG: I have two hobbies. Jazz piano – and I’ve played jazz piano since I was very young. I played throughout college and graduate school. I played alumni parties, that sort of stuff. And I actually still work with a really talented guy in Washington, I’m still, you know, “taking lessons”. I started when I was four, I didn’t start jazz at four, but I probably started jazz when I was about 9 or 10. My parents’ apartment building was down the street from a jazz club.

[Grinker went on to explain that he was able to spend a little time at that jazz club (back in that day), and although I didn’t take down all of the names, he quickly rattled through a list of jazz greats (such as Dizzy Gillespie) he was able to meet in his youth].

What about hobby number two? He just finished (and finished well in) the Boston Marathon.

(Disclosure: my attendance at IMFAR was funded in part, by a travel grant from the Autism Science Foundation.)

Amy Wallace discusses the responses she got to the WIRED article

28 Oct

A recent article in WIRED magazine took a close look at the vaccine/autism discussion. I discussed it briefly in a previous post. The article took a very science-oriented stance which, you can imagine, did not please the vaccines-cause-autism organizations.

For example, the “vaccines-cause-autism” organizations are listed by WIRED as “anti-vaccine” organizations.

The WIRED piece has caused a stir, even outside of the autism communities. Ms. Wallace’s piece has been noticed by Time Magazine,, and The Atlantic. Oh, and some of the “anti-vaccine” orgs blogged about it too.

Not surprisingly the author of that piece, Ms. Amy Wallace, received a lot of responses to her article. In an interesting move, she has discussed many of the responses on Twitter. These have been compiled on the “bastard sheep” blog.

In addition to the WIRED article getting noticed, the responses are getting noticed. The Terra Sigillata blog has a piece up. The LA Times LA Observed has a piece on their blog.

Let’s take a closer look at the responses. She got about 250 so far, with about 3:1 in favor of the article. Some of the responses from her twitter feed: Some responses, like the one noted in Terra Sigillata, were quite harsh. Here are a couple:

I’ve been told I’ll think differently “if you live to grow up.” I’ve been warned that “this article will haunt you for a long time.”

“If she lives to grow up”? Pretty clear threat there.

She has every right to complain. Instead Ms. Wallace has reported on these comments, but for the most part she hasn’t added commentary. This hasn’t stopped her detractors from calling her a “cry baby”.

I’ve been called stupid, greedy, a whore, a prostitute, and a “fking lib.” I’ve been called the author of “heinous tripe.”

This is one view the outside world is getting of the autism communities. Does anyone think this is helping? OK, there are the small minority. So, to be more precise, does anyone reasonable disagree with the idea that this hurts the autism communities?

Here are some more comments she received that focus more on the autism communites:

In his book, Autism’s False Prophets, Dr. Offit writes about scientists who have been intimidated into staying silent about autism/vaccines. If scientists – who are armed with facts and trained to interpret them – are afraid, can it be any surprise that a lot of parents are, too?

No, it isn’t a surprise. Sad, yes. Surprise, no.

One persistent theme in their emails is the idea that vaccination policies abridge our civil rights. As one reader put it, “Me and mine are not a herd. Human beings are capable and entitled to decide for themselves what to put in our bodies.” Another mom wrote, “The PARENT knows their child more than anyone in the world. The PARENTS, Ms. Wallace, NOT Mr. Offit.” Another said, “I have a Son that needs Me – not another needle.”

To which Ms. Wallace responded rather well:

This idea – which we discuss in the Wired story – is powerful: that parents, not medical experts, should be the ultimate authority on their children’s health. To which I say, with all due respect, and as a parent myself: loving your child doesn’t make you an expert. It makes you a devoted parent.

Ms. Wallace goes on to state:

The dominant emotion in even the angriest emails to me is despair. Forget the vitriol, the slurs, the insults. The despair is what I find truly painful to read.

Which she follows with this comment from a parent:

“Those of us with autistic children are really sick of you know-it-alls,” one mom wrote me. Then she delivered the best description of what a loving parent wishes for their child that I have received so far. “I want my daughter to feel like a ‘typical’ child,” she wrote. “I want her to experience ONE day of no GI pain or headaches. I want my daughter to be able to gain weight and be able to have enough energy to play on the playground with her friends. So, in between therapies, doctors’ appointments, crying, diarrhea, no friends, trouble with school, countless vitamins to keep her tiny body going and being near bankrupt, you think I want to be in this fight?”

Ms. Wallace responds:

No, I don’t think she wants to be in that fight. Who would? Autism can be truly devastating to families. There is no debate about that. Which is why – as so many parents have said — every available research dollar should be aimed at finding the causes of the disorder

Leaving aside the discussion of whether autism is a medical condition for the moment (although I expect and welcome comments on this):

With all due respect, here Ms. Wallace made a common mistake in equating understanding causation with progress towards therapies. Ms. Wallace seems to have bought into the assumption that if we know the causes, we will automatically know treatments. Well, yes and no. Yes, understanding causation may help in many cases. At the same time, in many cases it likely will not.

Take, for example, the idea that autism is vaccine injury. The alternative medical community already assumes autism is a vaccine injury. They already claim to be treating autism as vaccine injury. Do they have a “cure”? No. Do they even have any proven therapies? No. For that matter, are any of their therapies really based on treating vaccine injury, as they claim? No. As a simple example: can anyone point to a truly innovative therapy that Andrew Wakefield (father of the MMR-causes-autism theory) has developed?

Consider HBOT (Hyperbaric Oxygen Therapy). Can anyone give a clear explanation how that ties into vaccine injury? The closest “therapy” based on vaccine injury proposed so far is chelation. The removal of mercury from a body supposedly mercury poisoned from vaccines. The latest study, from their own researchers mind you, shows it is as effective as a placebo. Which is a nice way of saying: chelation doesn’t work.

I am not saying that causation research is useless. Far from it. However, it is neither necessary nor sufficient to produce the medical therapies many parents are searching for to treat their children.

I’ve gone off track from reporting the responses Ms. Wallace received to her piece. I’ve probably also sidetracked the discussion that will happen here.

Today Ms. Wallace added some comments she has received from autistics.

n the past week or so, I’ve heard from several people who said they were on the autism spectrum. They all said they enjoyed the article. What they don’t enjoy, however, is hearing themselves described as people that no one wants to be.

I’ll end with one comment out of those tweets:

“I have Autism. But: I am a person, not a problem. I am an asset, not a subject. I’m not a lab mouse, I am human.

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).


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.


(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.