Archive | 2006

Follow the money

31 Dec

Regularly whenever I read about some nefarious plot by Big Pharma to use vaccines to take over the world/cause autism/incite riots/insert crap of your choice here, the writer exhorts the reader to ‘follow the money’ as a phrase to indicate that the evil, money grubbers at Big Pharma can have their actions rationalised by seeing how much they might gain from the particular conspiracy theory under discussion. Of course, very rarely can these writers actually name an individual at Big Pharma or an alleged ‘payout’ they are getting.

Luckily, Times reporter Brian Deer is an _actual_ reporter – i.e. one who investigates his findings and sources his facts. Today he published the findings of his latest investigation into Andrew Wakefield and the associated people that support his vaccine/autism/legal financial business.

Brian has basically found that UK tax payer funded legal aid to the sum of _£3.4m_ was spent (wasted might be a better word) on payments to doctors and scientists who had been recruited to support a now failed lawsuit against vaccine manufacturers. This information wasn’t submitted voluntarily, Brian had to submit a Freedom of Information request in order to unearth the figures. There are some notable names on the list:

Andrew Wakefield: £439,553. Quite profitable to start vaccine litigation isn’t it? Seems that you can fleece the British tax payer to the tune of nearly half a million quid. Follow the money indeed.

But is good old Wakers alone? Oh no, this money making machine had a few members, some familiar names to this blog:

Dr Ken Aitken, Scottish DAN! Doctor: £232,022. After resigning under a cloud from his role at Royal Hospital for Sick Children, Edinburgh, Aitken gladly signed up for this gravy train which seems to have netted him nearly a quarter of a million quid of tax payers money. In 2004, Aitken was severely reprimanded by the British Psychological Society concerning his handling of an autistic child’s case. The society’s conduct committee said that he “allowed his professional responsibilities or standards of practice to be diminished by considerations of extraneous factors”.

Peter Fletcher: £39,960. I wrote a blog entry about Peter Fletcher’s anti-MMR strawmen awhile ago. Here’s a quote from him:

There are very powerful people in positions of great authority in Britain and elsewhere who have staked their reputations and careers on the safety of MMR and they are willing to do almost anything to protect themselves.

You can say that again.

And on it goes:

Arthur Krigsman, Business partner of Andrew Wakefield: £16,986. His unpublished ‘papers’ have been cited numerous times by Wakefield and supporters as evidence Wakefield was right, conveniently forgetting they were a) unpublished and b) written for his boss. According to Brian (see link in Aitken paragraph), in December 2004, he left Lennox Hill hospital, New York,after a lawsuit, which was followed by an ethics inquiry. In August 2005, he was fined $5,000 by the Texas Medical Board for misconduct. Gotta try and recoup some of that money somewhere eh?

Jeff Bradstreet: £21,600. Bradstreet – who recommends exorcism for autism – snapped up Wakefield as Director of his business after Wakefield was booted out of the Royal Free.

Mark Geier: £7,052. We could write a whole book on the Geier’s and their dubious practices. Luckily, Kathleen has documented most of them already. Suffice it to say, Geier shouldn’t be offering legal expert advice to anyone.

See some more notables on Brian’s personal site.

Brian’s report in the Times also states:

…among those named as being paid from the legal aid fund was a referee for one of Wakefield’s papers, who was allowed £40,000…

Which is an interesting position as Wakefield is on record as stating:

You cannot referee your own soccer matches. It’s like asking the Italians to — an Italian referee to take over the game of Italy between South Korea. It doesn’t work. Can’t do it. You have to separate those agencies that endorse and mandate vaccines and those who monitor safety. One needs to be on the back of the other all the time in order to check on safety.

Quite. That same principle also works against you Mr Wakefield. Back-handers to referee’s of your papers makes you an Italian throwing a bung to an Italian referee. Follow the money.

Also according to the LSC (who oversee administration of Legal Aid) A private GP who runs a single vaccines clinic received £6,000. Follow the money.

What the hell are the LSC playing at? They have a £2billion per year budget in order to provide legal services to people who can’t afford to retain a lawyer. Once that money is spent, its spent. Apparently, they’ve already:

acknowledged that the attempt to make a case against MMR with taxpayers’ money was “not effective or appropriate”.

Understatement of they year!

One of the legal aid recipients, John March has broken ranks to speak out against what has happened:

“There was a huge conflict of interest,” said Dr John March, an animal vaccine specialist who was among those recruited. “It bothered me quite a lot because I thought, well, if I’m getting paid for doing this, then surely it’s in my interest to keep it going as long as possible.”

I doubt March was alone in his thinking.

Wakefield has circulated a pitiful defence of his antics stating that these monies were received over a period of nine years and that after tax and ‘out of pocket expenses’ which he failed to detail or summarise he donated the money to charity. What a saint. The point, of course, is entirely missed. It doesn’t matter what you did with it Mr Wakefield, the point is that you got it. I hear tell some religious heroin dealers in Columbia donate some of their profit to churches. Big deal – they’re still crooks.

According to Brian’s report, at least one MP is calling for a an inquiry into how exactly this could’ve come about and a Lib Dem MP is quoted as saying:

“These figures are astonishing,” said Dr Evan Harris, Liberal Democrat MP for Oxford West and Abingdon. “This lawsuit was an industry, and an industry peddling what turned out to be a myth.”

Couldn’t have put it better myself.

More reading

Diva, Mike, Orac and Anthony.

Autism extremists

28 Dec

There is a lot wrong with the UK in terms of provision for autistic people and education about what autism is to the mainstream. One of the things that isn’t quite right is the National Autistic Society. It’s numerous flaws include a lack of autistic people at policy making level.

But you know what? It knows this about itself and is trying to change. It is also a deeply responsible society. It carries a link to this PDF on its data pages. This article is a short ‘what is…’ guide that explains clearly what people should look for in a decent science paper and why these things are important. Peer review is discussed, as is the importance of publication in a respected journal. I strongly urge people to download this and pass it on to any parent or interested researcher. Its a great, non-technical, helpful and clear article.

By contrast, the US Autism Society of America (which is obviously in a battle with Autism Speaks as its strapline is ‘the voice of autism’) seems to have taken a step further down the road to quackery. In the latest issue of its ‘Advocate’ magazine, it included a number of interviews with such mercury militia stalwarts as Mady Hornig, JB Handley, Dan Olmsted and Martha Herbert. It also included a ‘how-to recover autistic children’ guide from ARI (home of the DAN! docs). Of note was the trumpeting of a new treatment option I hadn’t seen before:

Medical Marijuana to control aggression…

So if your autistic child is acting up, give ’em an illegal Class C narcotic….is this really the periodical of the most mainstream autism organisation in the USA? Giving space to people who want to push illegal drugs to kids?

I’m not going to pretend I’ve made it through 37 years of life without imbibing the odd narcotic but I was an adult, making my own informed choices. These people are trying to suggest that its OK to give these things to kids. Incredible.

I’ve discovered some of the most informed, considerate and knowledgeable people in the US. I’ve also discovered some of the most frightening, genuinely ignorant (and desirous of that state) people in the US.

Every now and then I can’t hold back from posting to web forums that discuss autism. I did that just before Christmas at a web forum that I’ve now stopped posting at again – it reaches such a fever pitch of idiocy that you think ‘what’s the point?’ And of course, people mail me every so often to point out something dumber than usual that that poster boy for assholery John Best has posted. I stopped reading John’s blog awhile ago for the same reason – the people who post there aren’t interested in debate or enlightenment. They desire their state of ignorance. Well, a quick toke on what DAN! promote those days should help with that!

But anyway, a quick example of one of the more extreme people who post at both these places (I didn’t know until today that this person posts at John’s blog but it wasn’t a surprise) is a poster called ‘dgdavies’ – real name Diane. I find her utterly fascinating and repulsive at the same time.

I found out via her that there is a conspiracy to somehow tie in the vaccine/autism hypothesis to the 11/9 WTC terrorism (which, by the way, was orchestrated by an internal agency according to her). She was, understandably, not clear on the details but she was adamant.

I found out via her that the vaccine/autism hypothesis could well be an Illuminati plot as suggested by FAIR Autism Media wacko David Ayoub.

Her latest fascinating conspiracy theory is that (and this truly is an awe inspiring piece of self delusion) is that the diagnostic criteria for autism was widened at the last DSM revision _in order to ‘hide’ the mercury poisoned hordes_ .

I hear tell, that like John Best himself, Diane doesn’t believe in evolution.

Is this the legacy of Bernie Rimland? A bunch of whacked out stoners swapping addled stories? Pass the hash pipe dude.

There’s also the small matter of at least one ARI DAN doctor being a paedophile, another being very closely associated with a convicted paedophile, DAN doctors belonging to cults like Scientology and, of course, the DAN! hierarchy happy to accept killers. These aren’t conspiracy theories. These are established facts. Why have these people been given any time at all in a supposed mainstream autism publication?

The world is changing

23 Dec

Why do I do it? I’m sitting here writing this after a lovely meal which included a rare glass of red wine and a hefty slice of Stilton. Behind me I hear the earnest futility of Jimmy Stewart as my wife watches (would you believe for the first time ever?) ‘Its A Wonderful Life’. My kids are asleep upstairs. I will not be returning to work until January 2nd 2007. Outside my window the world is misty darkness but the lights of my local pub can just about be made out 200 yards away.

Everything is good (except Villa got stuffed 0 – 3 by Man Ure) and yet I still feel obliged to write.

All is good as we approach Christmas Day….except….six children who should be in the world this Christmas are not. Do not forget them. I feel a special connection to one of them through my new extended family in America, the McCarrons. As it is Christmas, why not mark the day by remembering Katie McCarron in a way that is permanent. If you agree with what I write about or not, please do not let that stop you. Remember Katie. Remember them all.

Do not forget that people are still in the hell on Earth of the Judge Rotenberg Centre. I have not blogged about the JRC for awhile but I have not forgotten about it. Neither has my friend Mike. Only today I received an email from an ex-employee about the JRC that will allow me to write about it some more in the new year.

If, unlike me, you are religious, please pray for the people incarcerated in the JRC. If, like me, you are not religious, do not forget them.

Lisa Jo Rudy runs the about.com autism section. Earlier this month she posted a blog entry asking:

What Do You Love Best About the Autistic Person in Your Life?

The number, depth, emotion and strength of the replies have struck a deep chord with Lisa Jo. She has posted another blog entry which details how she has compiled the _100 plus replies_ she received. All replies detail things that the commenter loves about the autistic person in their life. It is a powerful, moving and deeply affecting testament to how people can see the good in life if they really want to. There is good in _any_ situation, just as there is bad. In a year that has seen too much bad, this wide rainbow of good is like a breath of freedom. In a room grown stuffy with the stink of contrived negativity and stigmatising over-focus on quackery, this humanising thread is like opening a window and letting in a cool draft of fresh air. In these last days of 2006, breathe deeply friends, breathe deeply.

Blog stats for 2006

22 Dec

Of interest to absolutely no-one except me, I thought I’d bore fascinate you with the user stats for this blog. I’ve used a more accurate method this year of eschewing Awstats for a more powerful Logfile analyser called Web Expert which gives more emphasis to useful stats like unique visitors. Its a great tool but only if you have access to your sites raw log files. If you don’t I’m afraid you’re stuck.

OK,

This site has received *1,148,290 unique visitors* this year.

I am damn pleased with this stat. That’s over a million unique visitors in twelve months (minus a few days) and averages out to just over 3,100 unique visitors a day. Stats for late Oct, Nov and Dec are pushing me close to 4,000 per day. However, I think it’ll stable off next year.

It has received *7,021,795 total hits* this year. OK, hits are pretty meaningless.

This sites most popular day is a Wednesday.

More *Americans* visit this site than any other nation.

This site has been visited by people from *240 countries*.

This site has *approximately 510 subscribers via various Feed Readers*

The most popular browser is *IE 6.0* with Firefox coming a very close second.

There have been over 69,436 different phrases used to find the site.

The most popular phrase to find me is ‘autism blog’ which brought 843 people to the site.

*1,250 people* have added this site to del.icio.us

Technorati is broken for me. Not sure why. It says I have 190 links when I actually have close to 600. Weird.

The site has a PR that fluctuates between 6 and 8 on Google.

The site has served nearly 90GB of content this year. Good grief.

David Kirby – what have you done?

20 Dec

I want to follow up somewhat on Joseph’s techncial takedown of David Kirby’s recent act of intellectual suicide. On the Huffington Post he wrote a bewildering post called ‘Bad News for Mercury Defenders‘ which discussed how Dan Olmsted’s recent sleuth-like skills led him to talking about a report that undermined studies conducted using VSD data.

Let us begin:

Next June, when the Vaccine Trial of the Century gets underway in Federal Claims Court, government lawyers will defend the direct injection of toxic mercury into infant children by repeating the well-worn mantra that “five large population studies” in Europe and the US have completely exonerated the vaccine preservative thimerosal as a possible cause of autism.

My, my – vaccine trial of the century eh? I’ll have to remember that one when the verdict comes back. This is crap. No lawyer will have to defend the direct injection of mercury into infant children. What they will have to do is counter the accusation that thiomersal in vaccines caused autism. Kirby (as usual) presents a highly distorted view to his adoring fans. The truth is that as in all legal cases, the burden of proof lies on those making the accusation. The accusation is not that mercury is dangerous. the accusation is that it caused autism.

Again:

The VSD study is constantly held up by public health officials as EXHIBIT A in the defense of injecting mercury into little kids.

No, its not. If its held up as anything, its held up as a study that refutes the link between thiomersal in vaccines and autism. Seriously – isn’t this man a journalist? What’s difficult to grasp about this concept?

Kirby goes on to diss the remaining studies and surmises this section of his blog thusly:

With so many holes shot through their “five large studies” defense, the government lawyers will be left to argue that autism is purely genetic, that there is no environmental component, and that the rates of illness have not “really” gone up. We are simply better at recognizing and diagnosing the disorder, that’s all.

Well, if that is the case, the mercury-defense lawyers should have no problem proving it. All they need do is produce irrefutable evidence that 1-in-166 American adults of ALL ages (and 1-in-104 men) fall somewhere within the autism spectrum disorder, at the same rate as kids. But they can’t, and they won’t.

I can only surmise that Kirby is a big fan of the Wizard of Oz and had strawmen on his mind whilst writing this. Yet _again_ he fails to grasp the fact that what this trial is about is simply if thiomersal caused autism. All the vaccine makers have to do is refute the ‘science’ from the other side. And lets be honest, after the RhoGAM smackdown that’s going to be about as difficult as falling off a log. It’ll be surprising if any of the ‘scientific’ evidence ever gets past a Daubert hearing as it failed to do in the RhoGAM case.

And whilst we’re at it, no one has said anything about arguing autism is purely genetic. Why in Gods name would _that_ be required? Autism may well have an environmental component – I know I think it does – but unless Kirby is trying to say that the word ‘environment’ is interchangable with the word ‘vaccine’ then this is also just…meaningless.

And lets get back to the clinical science for a moment:

Instead, one must also consider biological studies (animal, clinical, test tube) when assessing causation. And that’s where the plaintiffs will come to court armed with reams of published evidence – produced at Harvard, Columbia, Davis, etc., and printed in prestigious journals – to suggest a highly plausible biological mechanism that would link a known neurotoxin with a neuro-developmental disorder

Has no one broken the news of the thiomersal/RHOGam/autism case to Kirby? _All_ the ‘science’ that Kirby is talking about here was brought to that trial (follow the link and you can download the entire Daubert findings and read the studies presented for yourself) and was cumulatively dismissed. Here’s what the presiding Judge stated:

However, upon being subjected to extensive cross examination, much of Dr. Geier’s analysis, based upon his collective review of a motley assortment of diverse literature, proved, in the Court’s view, to be overstated……[Dr. Geier] could not point to a single study that conclusively determined that any amount of mercury could cause the specific neurological disorder of autism.

So, that’s exactly what effect eliminating VSD based studies will have on the respondents case. None whatsoever.

But what about the plaintiffs? They have to prove beyond reasonable doubt that thiomersal in vaccines caused autism. And as Kirby helpfully points out:

….They wanted to know if the US database, the Vaccine Safety Datalink (VSD), could be used to compare autism rates in kids before, during, and after the gradual removal of thimerosal, which began in roughly 2000.

Unfortunately, the answer was a resounding “not really.” A laundry list of “weaknesses” and “limitations” associated with the database would render such a comparative analysis “uninformative and potentially misleading,” the panel said, (though it did suggest some excellent ways to re-approach the data going into the future).

Some weaknesses had to do with changes in medical practices over time. But many of the limitations sprang directly from the poorly designed VSD study itself….

So what studies could be killed off by this examination. Well, there are two actually. The first one is Verstraeten et al (2000) which is the one we’ve been discussing so far and Kirby’s been bashing. The other one is Geier and Geier (2005) which they plagiarised from Verstraeten et al (2000). Oops.

Why does the nuking of Geier matter whilst the nuking of Verstraeten does not? Burden of proof, which lies with the prosecution. The Geier paper will be used to help _establish_ causation which is vital, not prove it didn’t happen, which is not called for. The Geier paper (which was crap anyway, lets face it) has now been neatly and effectively taken out by Olmsted and Kirby. Don’t Americans refer to that as friendly fire? By removing Geier 2005 from the playing field, the prosecution are now left with clinical science which has already failed one Daubert hearing (I believe the legal term is ‘setting a precedent’) and any epidemiological data they can scrape together from VAERS and CDDS.

As far as VAERS go, I’d like to remind people of my own experimentation with VAERS. And as far as CDDS data goes, lets remind ourselves one more time what Kirby has said about CDDS data:

“if the total number of 3-5 year olds in the California DDS system has not declined by 2007, that would deal a severe blow to the autism-thimerosal hypothesis.”….total cases among 3-5 year olds, not changes in the rate of increase is the right measure.

And here, helpfully provided by Dad of Cameron are the ever-growing numbers in that cohort.

There’s also the small matter of The Simpsonwood Conspiracy. To quote Joseph:

….it completely undermines the foundations of the Simpsonwood conspiracy theory. You see, Verstraeten et al. were supposed to have found significant associations between thimerosal and neurodevelopmental outcomes beyond those that were reported in 2003. But now Kirby is endorsing a NIH report which says that ecological studies on the VSD database, specifically those done by Verstraeten et al., are likely flawed.

In other words, without the VSD data being good, the Simpsonwood Conspiracy is a non-starter.

Amazing.

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.

Just Sayin’ Part VI

19 Dec

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.

It’s a Beautiful Day

12 Dec

Here’s my beautiful girl:

Now we’re supposed to post two from the PosAutive YouTube group but there are over 160 that to be honest, I’ve enjoyed every single one of. What I want to do instead is talk about an email I got recently from someone I’d not talked with before. I know other members of the Hub have received similar mail. Its a good feeling to get mail like this and makes me feel like a difference is being made. All names and locations have been altered.

From my inbox:

You know, I have come a long way in my perception and understanding of having a member of the family who is autistic. And your website really spurred a lot of that shift forward. Prior to reading it for the first time, I held the same view of autism that most have – that the lack of outward expression – or different expression, anyway – indicated a lack of “sameness” on the inside. How wrong I was. I was explaining yesterday to my brother, who lives in ****** and rarely sees my kids due to distance, of how my view has changed. What I was telling him, in response to the typical question I get so often – “So …… how is Simon doing?” – is that he needn’t ask about Simon as if he has childhood leukemia. He is doing fine and will continue to do fine as long as we offer him the support he needs as a five-year old child. And as long as we continue to support him through each year. Nobody ever asks me about Kyle (Simon’s brother) in that same tone of voice. And they probably use that tone because that is the tone I used earlier in Simon’s childhood. After the Dx that is. I am now in the process of correcting people’s views of what it means to have an autistic child. And more, to give them examples of some of the little things I have learned that have helped Simon and I communicate so much more effectively.

Monday night, he brought me what is his current favorite book – Twas the Night Before Christmas. He handed it to me and made a noise indicating he wanted me to read it to him. I said “Do you want to read this book?” “No” was his reply. Puzzled, I said, “Do you want to play a game or do something else with Daddy?” “No, I want book” “Okay, so you do want to read this book – let’s go” “No, I don’t want to read this book”. Okay, this is typical – Simon and I are standing there semi-frowning at each other trying to achieve some understanding of why the other person is not “getting it”. He grabbed my hand and took me to the couch where I often read to him. We sat down and he put the book in my lap, then settled back for me to read it to him. I said again, “So you DO want to read the book”. His answer, “No, Daddy.” I thought for a moment, tried to put myself in his shoes so I could figure out what level of communication was misfiring here, and it dawned on me, “Simon, do you want ME to read the book to you?” “Yes, Daddy” was the reply.

This is a prime example of the distance I have covered since first being exposed to ND, and your blog in particular. I still look regularly at EOHarm stuff, though I no longer make any comments.

That’s pretty beautiful to me. A Dad and his child connecting.

What else has been beautiful this year? Esteé’s ‘Joy of Autism’ launch sounded pretty damn good:

The Launch of The Joy of Autism: Redefining Ability and Quality of Life last night was a dream.

Five autistic guests who spoke at the microphone, and a gallery full of people, willing to accept. Parents thankful and aware of our need to accept the joy our children bring us, despite the challenges. People untouched by autism approaching me who said “I didn’t understand autism, and now I understand a little more.”

And then, as I finished my speech which had no mention of the following words, Jonathan Lerman yelled: “SELF ESTEEM!”

Self esteem. Trust an autistic person to refine down to the absolute core essence what neurodiversity, the Hub, my video of Megan, all the video’s in the PosAutive YouTube group and the idea of opposing and defeating autism related quackery are all about. Self esteem.

But it didn’t stop there. Kristina Chew and Jim Fisher launched AUTISM AND ADVOCACY: A CONFERENCE OF WITNESS AND HOPE in which Kassi was a speaker.

Another attendee of that conference told me of an event xe witnessed at that conference which spoke to xem.

Kassiane asked everyone not to be so loud with their clapping. It was a wonderful thing to see a couple of hundred people switch from clapping to just waving their hands after each speaker. Anyway I started to watch Kassiane more closely and was amazed at the sensitivity her hearing. In New York there are always police cars and fire engines going someplace. She would cover her ears long before I would hear anything. After a few moments I would then hear the police or fire equipment but just barely because we were inside. On my way home that night I closed my eyes in the airport and just listened, the noise was maddening. Things that I normally just tune out must make travel for her unbearable. So there I sat in a New York airport, eyes closed and beaming with pride for her. With her sensitive hearing coming through that airport had to be like you or I walking a firing range without ear plugs. Courage comes packaged in all forms.

And as Jim Fisher shows the ripples of someone speaking who is qualified by experience spread far and wide.

The conference featured a memorable presentation by autistic self-advocate Kassiane Alexandra Sibley. “I’m not broke and don’t need fixin, ‘” Ms. Sibley proclaimed. Kassiane had just finished asking how many among the audience (of over 200) considered themselves “broken.” A fairly healthy smattering of hands were raised. The speaker noted that none of the hands belonged to the very small cohort of audience members that a moment earlier had identified themselves (by another show of hands) as autistic persons. “I guess none of us are broken,” the speaker concluded. It was a stunning moment amid an electrifying performance by Ms. Sibley.

A few months ago I posted a blog entry simply entitled ‘Enough‘ in which I basically informed several ‘advocacy’ groups that I – we – had had enough. I would not suggest that post inspired Esteé or Kristina but it did (to me) mark a turning point of passive blog writing.

That turning point will continue to be explored in 2007. Advocacy and anti-quackery efforts will be redoubled. This is a beautiful time for self esteem.

Support Autism Hub, Come out as evil ND

10 Dec

As I mentioned awhile ago, in an effort to fund the Autism Hub website I created some T-Shirts which you can buy in both the US and Europe. Doing this saves me from putting ads on the site or in the feeds, both of which I hate.

Anyway, I thought it might be amusing to play on a, ahem, certain sections perception of the Hub and the Hub members are and create a range of T-Shirts to play on that image. They’re not pricey, they’re good quality and they help me devote money to keeping the Hub afloat.

The European shop is here and the US/North American shop is here.

Below are the latest products added. As you can see, there’ a bit of a theme ;o)

European Shop (inc UK)

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US/North American Shop

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