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Geier and Geier ‘Significantly Misrepresent’ Themselves

10 Jun

Kathleen has written part one of a multi-part look at some of the recent actions of those purveyors of Lupron, the Geier’s.

Seems that a new study of theirs; ‘A Clinical and Laboratory Evaluation of Methionine Cycle-Transsulfuration and Androgen Pathway Markers in Children with Autistic Disorders’ was accepted for publication in Hormone Research and published online prior to being published traditionally.

The interesting bit is the claim of institutional affiliation to Department of Biochemistry, George Washington University, Washington, D.C., USA.

Intruiged, Kathleen contacted Dr. Allen Goldstein, Chairman of the GWU Department of Biochemistry and Molecular Biology to ascertain exactly what the Geier’s affiliation to GWU was. His reply was a bombshell and a further mark against the Geier’s honesty and reliability:

He described the affiliation with the Department of Biochemistry in the Hormone Research article as “fallacious,” and stated that it conveyed a “significant misrepresentation” of Mr. Geier’s position in the field of biochemistry.

I urge you to go and read the rest of Kathleen’s investigation into the Geier’s. Its a compulsive read.

As I understand it, this is _far_ from the end of the matter. There will be further parts to this ongoing issue. Keep an eye on the Neurodiversity weblog.

iRunman Autistic Celebration Run

30 May

Autistic Youth Runs PEI Tip-to-Tip for Autism Acceptance and Education

(Oyster Bed Bridge, PEI, May 28, 2006) On July 2nd, 2006, 18 year old Alex Bain will leave North Cape in a bid to be the first autistic to run Prince Edward Island tip to tip. Along the way, he hopes to raise $20/km for his almost 300 kilometre trek that will end in East Point on July 15th. The funds will be used to bring internationally recognized expert Dennis Debbaudt to PEI on September 27, 2006, for a series of 3 seminars about what happens and what should happen in encounters between autistics, emergency first-responders and law-enforcement officers.

Almost every weekend, for most of the year, Alex puts on this trademark yellow t-shirt, heads to a charitable road race on the Island. He runs not only for the charity benefiting from each race, but also for autism. Not to raise money to find a “cure” or to “prevent” people like himself from ever being born, the focus of most autism runs, but to raise awareness and acceptance. His recognition as the PEI RoadRunners 2004 Patterson Palmer Rookie of the Year and 2005 Ewen Stewart Inspirational Runner of the Year reflects both his running and advocacy abilities.

Accompanying Alex on her bike, and organizing Mr Debbaudt’s PEI seminar, is Alex’s mother, janet norman-bain, known as “jypsy” to many in the autistic community both locally and internationally through a website she ran from 1995-2005, “Ooops…Wrong Planet! Syndrome” at PlanetAutism.com. jypsy and another of her four children are diagnosed with Aspergers Syndrome, an autistic spectrum diagnosis. jypsy watched Alex start grade 1 unable to speak and graduate from Bluefield High School twelve years later with honours and prizes for top marks in two of his classes. This July she’ll be there to see him fulfill his dream to be the first autistic to run PEI tip to tip and help fundraise to make PEI a safer, more inclusive community for all autistic people.

Studies show that autistic people are no more likely to break the law than non-autistic people, but are 7 times more likely to come into contact with law enforcement officers. Dennis Debbaudt, a professional investigator, journalist and a member of the American Society for Law Enforcement Training (ASLET), is the father of a 21-year-old autistic son. He has educated law enforcement, criminal justice, and education professionals, as well as first-responders, autistics, and parents throughout Canada, the US, and the UK but has yet to present in the Maritimes.

The response of autistic people to encounters with emergency first responders may not always be socially expected or behaviourally typical. Mr. Debbaudt will explain how autistic reactions in some situations, such as running away, unsteadiness, apparently unpredictable or impulsive behaviour, or failure to respond in the expected way, may be misunderstood by first response professionals, resulting in serious consequences. Mr. Debbaudt’s law enforcement and first responder seminars offer tips and options for communications and responses designed to successfully resolve a call involving a person on the autistic spectrum, while his seminar for autistics, parents, caregivers, school personnel and other people, will address the many ways that parents can keep their child secure and safe both in the home and in the community and how autistics can increase their own safety and security. Everyone will come away with a good, practical understanding of the best approaches to make interactions with autistics more informed, safer and less stressful for all involved.

Autism is a neurological difference classified as a developmental disability. Autistic people have atypical behaviours in three areas: social interaction, communication, and restricted interests or repetitive behaviours. Autistics are different at the most basic level available: how they experience the world, and how they learn from it. Autism presents with measurable differences in perception, attention, memory, intelligence, etc. The autistic order and progress of development is different from the typical version as is autistic brain structure, allocation, and function. Autism presents strengths not available to the typical population, but the different pattern of strengths and weaknesses characterizing autism results in many difficulties as atypical needs and adaptive but atypical autistic behaviours are at odds with what is considered or expected as “normal”.

The PEI Council of the Disabled is assisting PlanetAutism.com in this fundraiser and will be handling the donations. Charitable donations can be made to the “PEI Council of the Disabled” (Runman Fund) by mail or at any Credit Union across PEI. Online donations can be made on the Run’s website, PlanetAutism.com/runman where much more information about the Run can be found including the daily schedule and a blog where you can follow the Run day by day.

The Judge Rotenberg Center

26 May

As we tootle about our lives we are sometimes unaware of the full horror of the human experience and how barbarity often exists justs out of sight. For people who are adjudged as needing to receive ‘treatments’, barbarity is in plain sight all the time.

The Judge Rotenberg Centre (note the happy colours) describes itself as:

The Judge Rotenberg Educational Center (JRC) is a special needs school in Canton, Massachusetts serving both higher-functioning students with conduct, behavior, emotional, and/or psychiatric problems and lower-functioning students with autistic-like behaviors

Wait for the animated gif to revolve a few times. Note the happy faces of the students. Note the lovely grounds.

The JRC achieves its results by administering an electric shock to its students when they are in need of corrective action. Students carry around backpacks to ensure they are close to the source of the corrective action. The device/process is called ‘GED’ – Graduated Electronic Decelerator.

Massachusetts Division of Public Licensure is investigating reports of burns to the skin of at least one student. A former worker claimed that JRC staff failed to move the electrodes each day as required to keep from burning the boy’s skin. Director Matthew Israel states that:

Our skin shock device does not cause burns when it is applied. Very, very occasionally, a device might cause a superficial mark on the skin, from which the skin recovers quickly.

Source

A ‘superficial mark’. Right. I guess ‘superficial’ might be in the eye of the beholder Mr Israel. Or, in this case, the skin of a young man.

The JRC also has an interesting take on diet – from its ‘foods to avoid’ section:

1. Avoid all red meat, including beef, pork, and lamb. All are rich in fat, cholesterol, and other harmful constituents.
2. Avoid all poultry and fish. Poultry has about the same amount of cholesterol as red meat, while fish varies, depending on type. Some fish are higher in cholesterol than red meat, others lower.
3. Avoid all dairy products, including milk, yogurt and cheese. Low-fat dairy products are not recommended because of potential health hazards including allergies, childhood diabetes, arthritis and lactose intolerance.
4. Avoid all oil, including olive, safflower, peanut and corn oil. Oil is simply a liquid form of fat.
5. Avoid eggs. Eggs are abundant in fat and cholesterol.
6. Avoid nuts, seeds, avocados, olives and soybean products (including tofu, soy cheese, and soy milk). Soybean products are high in fat, unless they have been specially processed (low-fat varieties are also not recommended).
7. Avoid all dried fruit and fruit juices. (Eat the whole fruit instead).
8. Avoid all flour products, such as breads, bagels and pretzels. The less a food is processed the better it is for weight loss. Flour products are composed of fragments of grain, or relatively small particles, which increase absorption and slow weight loss.

And then from an ex-employee:

A 12-year-old autistic girl wasted away to a “bag of bones” under a harsh dietary regime imposed by the controversial Judge Rotenberg Center for troubled kids, a former employee charges.

Source.

The JRC has also made the news recently by lying about its staff.

The Boston Herald reported Wednesday that the Massachusetts Division of Public Licensure is investigating at least 10 JRC therapists for allegedly practicing psychology without a license. The allegations were initially made by New York lawyer Kenneth Mollins, who complained last week that 14 of the 17 clinicians listed on the residential school’s website are not licensed psychologists. After Mollins’ allegations became public, JRC removed the title of psychologist from the names of all of its therapists that do not have licenses. “We have acknowledged we were giving the incorrect title,” JRC attorney Michael Flammia told the Herald. A district court magistrate will decide next week whether criminal charges will be filed against the 10 therapists and possibly four others that are also under investigation.

Source.

These are just the things that have been discovered.

My fellow Brit, Mike Stanton blogged about the JRC back in April. Amongst the commenters was someone calling themselves ‘Jackie’. Jackie had the following to say:

The director of JRC encourages staff members to use electroshock to quitting smoking, makes staff members watch slaughter house movies as a condition of their advancement, and is starving some of the patients who can not thrive on his radical vegetarian diet.

and

The worst shock punishment is when staff straps a child to a board and tell her that she will be shocked randomly five times in the next hour. Here the ultimate punishment is not the shock but the hour long terror.

and

However, the worst punishment is when food is withheld from a child for bad behavior. Every child’s behavior deteriorates when food is withheld so JRC becomes directly responsible for the behavior for which the child is being punished.

Director Matthew Israel seems to be a fairly typical quack. When challenged to present evidence for his aversive-based regime he says:

Our mission is to function as a school, or service agency, and not as a research agency. Indeed, the funds we receive for our services are not supposed to be spent on research.

Which is a fairly standard altie method of avoiding the necessity for validating quackery. Israel goes on to cite the NIH ‘Treatment of Destructive Behaviors in Persons With Developmental Disabilities’ statement from 1987 as supporting his practices. However upon visiting the page in question one finds a large disclaimer in bold, red, emphasised, uppercase type:

THIS DOCUMENT IS NO LONGER VIEWED BY NIH AS GUIDANCE FOR CURRENT MEDICAL PRACTICE.

I can find next to nothing in Pubmed regarding aversive based treatments.

However, one of the most disturbing aspects of the JRC is the readiness with which it is embraced by its students parents. the JRC maintains a blog in which it posts messages of support from students parents. None of the students views are represented. A typical example is below:

_”Before placing my daughter Julissa at JRC, I suffered tremendously because of her behaviors. She did not obey my rules, she did not listed to me, and she used to go out without permission. When she returned home and I tried to talk to her, she used to get very angry and hit me. When she did something wrong and I tried to give her advice, it was for nothing because she did not listed. One time, she even took money from me without me knowing. She took my ATM card, and since she knew my pin number, she took out $700.00 dollars that I was saving for that month’s rent. At home, we hardly ever slept. My other daughter, my granddaughter, and I were very nervous because of Jusissa’s behaviors.”_

_”Julissa was admitted to the Metropolitan Hospital in two occasions. Also, she was admitted once at Holewood Hospital in Queens. Every time she left the hospitals and returned home, she exhibited the same behaviors.”_

_”Even though my daughter was admitted into two different hospitals and was placed into different treatments, and many prescribed medications, nothing really helped her. I give my testimony of faith that nothing has been better than the treatment or better said the discipline that JRC school has.”_

This sounds (to me) like a naughty girl. But a girl deserving of the sort of regime described above? Electro therapy because a child wouldn’t follow her mother’s rules? On what grounds are these good criteria for this regime?

When I first heard about this, I thought it was a joke. Unfortunately its not.

Autism Hub News

7 May

You may remember that earlier this year, I launched Autism Hub in an effort to centralise the blogging efforts of people who blogged along themes associated with autism – what they all have in common is no interest in curing autism. Some bloggers are parents, some are autistic people, some are scientists – some are all three!

However, I was totally unprepared for how successful the Hub would become in such a short space of time. There are now over 30 members whereas the Hub began with less than 20. I have at least 4 applications sitting in my inbox right now waiting for me to deal with them. The Hub sends each of its members a simply mind-boggling amount of traffic. I don’t know if any of the other Hub members are as obsessive about stat tracking as I am (and seeing as not a few are with Blogger, that would prove to be tricky) but every _week_ sees an increase – and from an increasingly diverse audience. Personally, I’ve had referrals from a .uk.gov source, a .nhs.uk source, the CDC in the US, the FDA in the US – what _seems_ to be the Canadian autism association – the Times, Guardian, Daily Mail (snigger) and erm, The Sun newspaper in the UK and a variety of US newspapers I don’t know very well aside from the New York Times and (I think) the Boston Globe.

And of course, there’s the ever-watching, ever-silent mercury militia. Hi guys :o)

In terms of numbers, I (_this_ site) get(s) around 1000 unique visits a day via the Hub. Its difficult to tell how many visitors the Hub itself gets because its not the sort of site that _gets_visitors, more the sort of site to _distribute_ visitors, but just about every Hub members places a small (less than 5kb) graphic on their sites. So far this month (7 days) this graphic has processed 86mb of data – this means that single graphic has been seen by 17,613 people. that works out to about 75,000 unique visitors a month, or 2,500 per day. And that’s not counting the over 400 people who access the feeds direct from the 2 feeds the Hub has.

This has all happened in less than 3 months. Incredible.

And yet, the Hub itself has become a victim of this success – its not a very flexible design and is begging for a decent bit of information architecture applied to it. I’ve recently expanded both the front page and the RSS feeds – this is just the beginning of what needs to be a fairly substantial overhaul.

I am delighted that so many people are interested in a more ‘no need to cure’ point of view than some people (ahem) might feel comfortable with – it gives me a sense of hope that our children and our adult friends and colleagues may have a slightly less judgemental future than was previously feared.

The Hub bloggers are doing a great thing – they are disseminating truth, respect, positivity, objectivity and tolerance. I thank each and every one of them and I promise to continue developing a site worthy of their efforts.

JB Handley – Interweb Genius

3 May

After the launch of Put Children First, JB was flushed with pride at the mighty accomplishments of his lovely new website. So much so that he posted the following to the EoH group:

I have been watching the web hits on PutChildrenFirst.org. The most hits are from the CDC’s router. Hey CDC, go fuck yourself!! Lots of love, JB

JB Handley, EoH.

Woah! Pretty impressive!

Except….lets delve a little into the murky geek-ridden world of web stats for a moment. What is a hit? Why do people think they are a good thing?

There is a common misconception that ‘a hit’ means a person has visited a site. Not so. A ‘hit’ refers to one _object_ on a page being accessed once. For example, if a user visits a page that contains 14 images and nothing else then 14 hits will be registered. If we wanted to get really worked up by ‘hits’ we could all add a million images to a web page and then as soon as one person visited that page – we’d have a million hits! – cool huh?

No, not really. I hope its clear why.

What’s worth getting excited over in terms of web statistics are _unique visitors_ . This refers to the amount of unique visitors that the site has received. Obviously, this is a much better indicator of how many users have actually seen your pages. But even this does not necessarily refer to _people_ as search engines, RSS spiders and a whole host of other automated bots are counted as users too. But still, this is the best way to get a reliable approximation on how many people visited your site.

So, what have we learnt? Hits are nothing to get excited about.

But that wouldn’t make much a blog post now would it?

Two of my favourite visitors to my humble little blog are Sue M and Erik Nanstiel. Together they can be counted on to loudly trumpet anything and everything that comes from the holy apertures of a select group of people, including JB. So when the putchildrenfirst site was launched, along came Erik and Sue to mention it at every available opportunity.

Well, someone must’ve followed a link from here to there because someone from there subsequently followed a link from _there_ back to _here_. And how do I know this?

Let me introduce the concept of _referrers_ – basically, the page you are coming _from_ leaves a footprint in the page you are coming _to_ – its how web statistics packages track who links to the site they sit on.

So, my referral to putchildrenfirst.org shows up in JB’s web stats package – whomever it is monitoring these things (JB, one would assume based on the above post to EoH) – is curious and clicks the link which in turn places the referring page from putchildrenfirst.org into _my_ web stats package.

So, I login to my webstats package this morning and lo and behold – what do I find but a link straight into the heart of putchildrenfirst.org’s web stats package. Cool :o)

Let’s see how well its doing shall we?

I could point you to the relevant page if you like: It’s right here and you can see for yourself. But, I also took the precaution of making a copy and uploading it to this site – just in case ‘someone’ decides to finally get smart and apply some basic security to their web stats.

I also thought it would be polite to offer an explanation of what’s going on for the less techy amongst you.

OK, the first line to note is the average visits per day. PCF got an average of 444 unique visits per day through April. For a site that was advertised all over the press, apparently seen on TV and was heavily promoted at a rally, that’s pretty crap. My own site, by comparison, gets an average of 3140 unique visits per day.

But lets also look at the section entitled _Daily Statistics for April 2006_ as this gives us a very clear picture of the popularity of the site. Remember that ‘visits’ – the yellow column in that table – is the key indicator. Using that we can see that on only 3 occasions did PCF get more than 1000 visitors per day – the 5th, 6th and 7th. After that, the visitor stats take on the appearance of a slowly deflating balloon. By the end of the month, PCF is barely scraping in 100 visitors a day.

Like a lot of single issue group websites, PCF suffers from the fact that it never has anything new to say. To have a successful site the absolute _biggest_ point to address is that of fresh, engaging content. I don’t know who the copywriter was for PCF but the breathless, barely concealed hysterical conspiracy theory-esque edge really does the site no favours. To put it simply – PCF was a novelty site who’s novelty value lasted 3 days and who reached the wrong audience.

What do I mean the wrong audience? Well, as JB says, one of the most popular visitor IP’s referred back to the CDC. Scroll down to the section headed _Top 30 of 10917 Total Sites_ for evidence of that.

One of the largest amount of visitors (please note this table is *not* sorted on amount of visitors) came from WilliamsBailey.com….a firm of lawyers…guess what one of their specialties is….can you guess?

I have to admit I’m very confused by this as JB recently wrote an open letter to Paul Offit on EoH which stated amongst other things:

No one who paid for the Ad is a vaccine litigant. No one who paid for the Ad is involved with trial lawyers.

JB Handley, EoH

I guess it must just be one of those strange coincidences that the joint 10th most popular visitors was a firm of thiomersal/autism lawyers.

However, the most popular group of visitors indeed came from the CDC – 38 visits. The second most popular was the MSN Search Engine bot. This is not the MSN search engine referring people to PCF, this is a visit from the automated script that ‘collects’ sites. Another notable visitor seems to be the AAP. The rest I don’t recognise so I would assume are ordinary visitors.

Now, if I was pushing a website in a national newspaper ad, and splashing the URL all over the TV and on placards at a rally, then I’d really want the ordinary folk of the country to be my visitors. That’s who need to hear my message. However, its clear that the main people who heard PCF’s message were the CDC, the AAP and thiomersal/autism lawyers – oh yeah, and an automated script or two.

Isn’t that kind of a waste of time? Don’t they already know how you feel?

So, lets move on to the referrers list – the section entitled _Top 30 of 1121 Total Referrers_ is the one you want. This lists the top 30 sites who have provided links to PCF – sorted by ‘hits’ unfortunately, which as we’ve already discussed is a meaningless statistic.

The most popular links to PCF is…..PCF. Not surprising – Webalizer (the stats package PCF uses) can (I think) be configured to ignore its own domain but nobody did I guess.

However, the next referrer is a _doozy_ – David Icke, shellsuit wearing, self-professed ‘son-of-god’ who believes we are ruled over by a race of lizards.

The rest of the referrers are other anti-vaccine groups. The only two of any note are ‘The Hill’ and a Press Release site. Neither generated a lot of traffic for PCF.

So, in closing, I think its fair to say that PCF was about as successful as a Thames whale rescue. I’d like to thank Erik and Sue M, without whom, whomever clicked through from PCF would never have been able to do so and I would never have been able to access PCF’s web stats.

JB – if you’d like a decent web developer to handle your sites from now on, I’d be happy to provide a quote. I promise not to leave your bare arse hanging out for the world to see either.

UPDATE: Looks like JB’s up to his old tricks again.

‘Acceptance Therapy’ In Action

27 Apr

I was sent a newly published paper today and for one it was a total joy to read from start to finish.

Usually I have to wade through mercury, MMR, epidemics etc. Today there was none of that. The paper is entitled:

A qualitative investigation of changes in the belief systems of families of children with autism or Down syndrome

An intriguing title and one that I admit I first thought was going to be heavy on religion and low on science. I was wrong.

The results of this paper were:

Parents can come to gain a sense of coherence and control through changes in their world views, values and priorities that involve different ways of thinking about their child, their parenting role, and the role of the family. Although parents may grapple with lost dreams, over time positive adaptations can occur in the form of changed world
views concerning life and disability, and an appreciation of the positive contributions made by children to family members and society as a whole. Parents’ experiences indicate the importance of hope and of seeing possibilities that lie ahead.

How absolutely refreshing not have to wade through the _Strum und Drang_ of ‘the hell/abyss/nightmare’ of autism and how all its ‘victims’ are destined for a life of institutionalisation, abuse and neglect.

Over time, parents may experience changes in ways of seeing their child, themselves and the world. These new perspectives may encompass profound rewards, enrichments, and the appreciation of the positive contributions made by people with disabilities

and

A wide range of positive changes or transformational outcomes have been reported by parents of children with disabilities, including: the development of personal qualities such as patience, love, compassion and tolerance (Summers et al 1989; Behr & Murphy 1993; Scorgie & Sobsey 2000; Kausar et al. 2003); improved relationships with family members and others (Stainton & Besser 1998; Scorgie & Sobsey 2000; Kausar et al 2003); stronger spiritual or religious beliefs (Yatchmenoffet al. 1998; Scorgie & Sobsey 2000; Poston & Turnbull 2004); an ability to focus on the present (Featherstone 1980); and a greater appreciation of the small and simple things in life (Abbott & Meredith 1986; Kausaret al. 2003). Studies therefore indicate that, with time and experience, parents of children with disabilities may come to regain a sense of control over their circumstances and a sense of meaning in life by seeing the positive contributions of their children with respect to personal growth and learning whatis important.

There is so much truth to this. My marriage and relationships with my kids has grown stronger and stronger. We have learned how to work for and support each other in so many ways and we place precious value on the here and now. We don’t get the twice yearly holidays, constant cinema trips etc that a lot of my peers enjoy but what we do is spend lots and lots of time with each other. This would never have happened if our daughter wasn’t autistic.

Initial reactions to parenting a child with a disability

I remember when I first got the diagnosis, my preoccupation – to be perfectly honest with you – was about me. It wasn’t about my son. It was about what I was feeling. And I was feeling powerfully upset about this diagnosis because . . . it just completely turns your life upside down. I had plans. I wanted my children to be happy but I wanted them to be accomplished. . . . So both of us – my husband and I – had this vision of our children as being academically keen. . . . So to be confronted with the possibility that my son would not even have imagination, I just didn’t know what to do. I was devastated. and I couldn’t fix it.

Again, this is a very accurate reflection of how I felt at the time. One turns inward and searches for reasons, for blame and for a way to _fix_ things. I have to smile as I look back at those days now but they were pretty awful. Particularly for our daughter who we subjected to _our_ guilt.

Family Strengths

This is a quote from a service provider:

I find that the majority of families that I know who have kids with special needs are some of the strongest families that I’ve ever encountered. . . . I remember someone making a comment once about ‘You must see a lot of dysfunctional families.’ I said ‘It’s the exact opposite, they are some of the healthiest and strongest families that I’ve known.’

And I think that _can_ be true as well. Not always. I’m aware of a lot of families who have not managed to move past the ‘me’ stage and I hear about divorces and arguments and screaming matches and custody battles.

Neurodiversity, Acceptance and Cure

No, the word ‘neurodiversity’ is never used in this paper but it may as well be – its _exactly_ what some of these parents are talking about.

Our children have taught us the true worth of an individual. Our society tends to value persons based on performance, knowledge, education, the ability to earn income. And these children have taught us that there are so many more inherently important values, which have shaped us as a family.

One of the most powerful quotes from a parent was this one:

Another thing that makes me feel that I am so much smarter than I used to be is that I have given up trying to fix my son. . . . All I have to do is figure out . . . what he wants and what will make him happy, and try to put a structure around it. . . . He’s fine the way he is, and it was for me to figure that out and, gee, the poor guy while I was figuring that out.

Fine the way he is. Are there people out there who can _hear that_ ?

And it’s true that if you don’t change the way you think about this child, if you always think that you wanted to have a normal child and you are always comparing your child to a normal child, you’ll never really be accepting and you just don’t get anywhere.

It really is as if these researchers had interviewed me for this study (obviously they hadn’t – its Canadian) as these are thoughts and opinions that I share. It says to me that far from being an isolated phenomenon, the ideas that underpin what I think of as neurodiversity are much more pervasive and widespread than a lot of people imagine.

I’ll close by saying how much I enjoyed reading this paper. It moved me to tears and it made me grin from ear to ear. The authors conclude:

The findings may provide families with a sense of realistic hope for the future, and may validate their perspectives by showing that they are not alone in their experiences and challenges. It may be beneficial for families to know that family life changes, and that other parents report changes in ways of thinking about their child and their parenting role that provide a sense of control and meaning in life. Parents may find it useful to know that it is common to feel a lack of control, and disappointment and sadness due to lost dreams. Over time, many families gain new dreams, develop new understandings of their child and of the world, manage life effectively by adjusting their priorities, and report life-changing benefits for themselves, other family members, and members of the broader community.

Hasten the day :o)

Enough

10 Apr

_An open letter to Generation Rescue, NAA, SafeMinds, ASA, A-CHAMP, DAN et al._

I’ve had enough.

If I might be permitted to make a few assumptions I believe its accurate to say that _we’ve_ had enough. Who are we?

We’re parents like you. However, unlike you, the self-styled ‘autism community’, we are also autistic people. We are also scientists. We are also professionals working in the field of autism. We represent groups of people that you never can and never will. We are fundamentally different in attitude from you and _we have had enough._

Enough of the lies. Enough of the misrepresentation. Enough of this media circus you are turning autism into.

_You lie._ When the NAA published its scurrilous attack on Paul Shattuck it revealed the depth of its desperation. By wilfully and deliberately *lying* about the ‘Merck’ connection, you revealed yourselves as people willing to do anything and everything to blacken the name of those who simply disagree with you.

When you allege conflicts of interest that amount to absolutely nothing – _and when they know this to be the case_ – then you again reveal yourselves as tawdry and grubby dirt diggers, desperate to besmirch people. The irony of your president having an established and non impartial financial connection to David Kirby and your chairperson having been in the pay of lawyers litigating the thiomersal connection is immense. It boggles both the mind and any ordinary persons sense of common decency. At the absolute least you owe Paul Shattuck an apology.

_You mislead_ . When Generation Rescue _continue_ to state baldly that autism and mercury poisoning are interchangeable – that one is the other and that is all that autism is, it is obvious that that organisation is comprised of absolutist zealots who care nothing for reality, science or truth – all of which are concepts that stand in direct opposition to your beliefs. When you ignore the reality that there is likely to have been _no epidemic of autism_ and yet you continue to use falsely inflated statistics like a 6000% increase in autism _and when *you know* this increase is down to better diagnosis, widening criteria and the fact that its only in the last 15 years or so that autism has been counted separately to other developmental ‘disorders’_ then you move beyond the bounds of simply misleading, you move beyond the bounds of simple innocent ignorance and enter the area of wilful, deliberate manipulation.

When you resort to buying and placing adverts that _you know_ are misleading and with which _you know_ the people you cite do not agree, when you resort to employing the services of media manipulators like Fenton Communications to dress up your spin for you then you have left simple campaigning behind and entered the realm of deliberately misleading, exaggerating and falsifying.

When Generation Rescue employ the services of men like John Best Junior to enter the homes of families then you know something is badly awry with the morals and ethics behind this organisation. These are the words of a Generation Rescue Rescue Angel:

Some “brilliant” goofball coined the term “Homophobia” in a pathetic attempt to bring some small measure of respectability to a perversion. Fortunately for me, I grew up in an era when people were not subjected to public acceptance of sexual perversion. I never “stomped” a queer and I don’t approve of that behavior. I also don’t want to have to hear about this nonsense portrayed as anything near normalcy.

The scientists you quote range from respectable to quacks. You misrepresent the nature of the respectable science and hype the quacks as credible scientists. When your science is conducted by men censured by government and peers (the Geiers) or is conducted by men who behave very curiously such as pre-registering patents that back up future research, source subjects for studies that are undergoing litigation or allegedly financially benefit from these associations (Wakefield) or who refer to autistic children as ‘mad’ (Boyd Haley) or ‘train wrecks’ (Rick Rollens/MIND) or who attempt to make their science relevant _to autism_ where it is clearly not (Hornig, Burbacher, Deth, Bernard) then you have a serious credibility problem.

But none of this – none of it – would matter at all, except for one thing (or several things). You call yourselves the ‘autism community’. You present your manipulations as fact. You fail to understand the good science and twist the bad science to fit your agenda. You rely on people such as David Kirby – a man who is demonstrably dishonest and a man like RFK Jr who invents conspiracies where none exist. These are the people who shape your policy and guide your information – David Kirby, Dom Imus, RFK Jr, Dan Olmsted. Journalists, chat show hosts and a wannabe politico.

Enough is enough. I’ve had it. Up until now, we’ve contented ourselves with correcting your ignorance and dishonesty in blogs, forums and chat rooms. Now we will be finding ways to extend ourselves. Wherever you are quoted, we will follow up. We will make sure that people know the sort of spin you employ, the sort of manipulation you attempt and the sort of people who are aligned to your cause. Because of you, vaccine uptake is dropping. Because of this, epidemics are breaking and people are dying. Because of you the field of autism research is being turned, into the words of Lisa Randall, into a ‘a vipers nest’ where scientists are more and more loth to get involved. Who can blame them when the sort of shameful behaviour in evidence on the Evidence of Harm email list comes to the fore? Parents hassling and abusing people like Paul Shattuck, despite his clear request for them to cease and desist. Parents making alleged threats of property violence against Paul Offit.

Because of you, the field of autism research is in extreme danger of sinking into a dark age. The gains that autistic people themselves have fought for over the last few years are slipping away into a _real_ abyss of ignorance and stigma. This must be stopped. _You_ have to be stopped.

This is about dignity. Its about respect. You have none and you are in the process of taking ours away. We will fight for it. For ourselves, for our children, for our siblings, for the good of diversity and to attack stagnation we will fight.

Get ready.

Autism ‘Epidemic’ Groups Turn To Misrepresentation

5 Apr

Following publication of the Shattuck paper casting doubt on the evidence for an autism epidemic:

The mean administrative prevalence of autism in US special education among children ages 6 to 11 in 1994 was only 0.6 per 1000, less than one-fifth of the lowest CDC estimate from Atlanta (based on surveillance data from 1996). Therefore, special education counts of children with autism in the early 1990s were dramatic underestimates of population prevalence and really had nowhere to go but up. This finding highlights the inappropriateness of using special education trends to make declarations about an epidemic of autism, as has been common in recent media and advocacy reports.

Source.

The usual suspects have begun to trot out the usual ploys to try and misrepresent and obscure. The National Autism Association write:

A study published today in Pediatrics, “The Contribution of Diagnostic Substitution to the Growing Administrative Prevalence of Autism in US Special Education,” suggests that autism diagnoses haven’t actually risen over the past two decades, despite *growing and credible scientific evidence to the contrary*. In addition to the study’s *weak methods and erroneous conclusions*, questions have now arisen over possible *failure to disclose conflicts of interest* and *recent findings that data from previous autism projects with which current study author Paul Shattuck has been associated were fabricated*.

So first lets tackle the ‘growing and credible scientific evidence to the contrary’. Where is it? Where does it exist? Note that NAA totally fail to name, or even _reference_ this ‘growing evidence’.

They also mention ‘weak methods and erroneous conclusions’ yet again failing to illustrate what these ‘weak methods’ are or why they are weak. As far as erroneous conclusions go, that seems to be NAA double-speak for ‘things we disagree with but can’t back up’.

But what about ‘failure to disclose conflicts of interest’? NAA say:

Although the article states that Dr. Shattuck has indicated he has no financial relationships relevant to the article, NAA has learned that he was a Merck Scholar Pre-doctoral Trainee from 1999-2003, and in 2003-2004 he successfully applied for $530,000 from the Centers for Disease Control and Prevention (CDC)

Somebody remind me again – what year is this? 2003? 1999? Or is it 2006? two years after Dr Shattuck had *an alleged* financial relationship with Merck.

UPDATE: Orac Provides the following: _”Oooh, Shattuck received money from the evil Merck to support his training! Except that the Merck we’re talking about seems to be not the evil drug company but rather a nonprofit organization, the John Merck Fund, which supports research into a variety of areas, particularly developmental disabilities.”_

By comparison, Wendy Fournier, president of the NAA has an ongoing, established financial relationship with David Kirby – author of Evidence of Harm – as does Safe Minds. Claire Bothwell, Chair of the NAA, works(worked?) for Waters and Kraus, lawyers who solicit thimerosal plaintiffs over the internet.

Lastly, what about ‘recent findings that data from previous autism projects with which current study author Paul Shattuck has been associated were fabricated’? Sounds damning, until you read on:

Although he was not personally implicated, Dr. Shattuck’s former research partner, a graduate student at the University of Wisconsin’s Waisman Center, was recently disciplined by the Health and Human Services Office of Research Integrity for scientific misconduct due to fabrication of data. Dr. Shattuck and others published several articles and delivered scientific presentations using data from the project in question

So someone that Shattuck once quoted got themselves in trouble. Thats hardly what I’d call

…with which current study author Paul Shattuck has been associated…

There’s also no indication that these studies Shattuck referenced, or the presentations he made which referenced them had _anything at all_ to do with autism.

The press release goes on to say:

Given the rocky history of the CDC and the autism community, failing to mention the author’s ties to this agency is a glaring omission that requires an explanation,” commented NAA board chair Claire Bothwell. “Clearly, the CDC has a vested interest in deflecting attention from the possibility that children injured by mercury-containing vaccines ended up with autism diagnoses which fueled autism rates off the charts

First of a message to the NAA, Safe Minds, Generation rescue etc – *you are not the autism community* . You represent a small subset of parents. Thats it. What you have is a good PR campaign and a few pet journalists.

Secondly, its clearly the case that several anti-vaccine groups such as NAA, SafeMinds etc are beginning to get very very jumpy and have a vested interest in deflecting attention away from the increasing evidence that there has been _no epidemic of autism_ and that autism is not caused by thiomersal in vaccines. Autism rates are not ‘off the charts’ – the charts were simply never big enough to start with.

These groups need to stop politicising the issues, need to stop painting themselves as ‘the autism community’ and need to stop this pointless and utterly transparent attack on any credible science that undermines their isolationist position.

Dan Olmsted And The Autisms

2 Apr

No, not a new rock group.

Dan Olmsted is a UPI reporter who forms part of the Holy Trifecta of Media – the other two prongs being Evelyn Pringle and of course, good old honest, impartial David Kirby.

Dan Olmsted burst onto the scene with the attention getting ‘Amish Anomaly’ wherein he discovered through an exhaustive and meticulous system of asking a water purifier salesman if he knew of any, that only vaccinated Amish people are autistic.

The ‘Amish Anomaly’ caught peoples imagination – ‘if vaccines don’t cause autism then why don’t the Amish have more autistic people’? was the cry on everyones lips – conveniently brushing aside the fact that Olmsted’s system was about as much use as a chocolate fireguard – and also conveniently brushing aside the fact that the Amish have a virtually closed gene pool. But of course all right thinking people know that autism was invented by Eli Lilly in 1931 thus these facts don’t make any difference.

So it must’ve been strange for these ‘right thinking people’ when a bunch of autistic people turned up right in the same area Dan Olmsted performed his meticulous research. Only these people were found as part of a research paper summarised here.

A study of Old Order Amish children has identified the genetic mutation that causes a previously unknown disorder, with seizures that progress to autism and retardation.

How could this be? Surely a reporter as experienced as Dan Olmsted with autism couldn’t have missed this? Here’s Dan’s primary source – the water purifier salesman – again:

I’ve got to tell you, I have never seen an autistic Amish child — not one,” he said. “I would know it. I have a strong medical background. I know what autistic people are like. I have friends who have autistic children.”

And here’s the science again:

A study of Old Order Amish children has identified the genetic mutation that causes a previously unknown disorder, with seizures that progress to autism and retardation.

Huh. Something of an anomaly. Or maybe – just maybe – Dan Olmsted’s source was full of shit.

So how _could_ Dan’s source have screwed up? Maybe because he _doesn’t_ know autism as well as he thinks he does. These children were ‘secondary’ autistics: those who’s autism is a comorbidity in itself (example: in this page autism is a comorbidity of Down’s Syndrome). In the case of the children in this study, their autism was secondary to their seizures.

However, that does _not_ equate to them not being autistic any more than an autistic person with a comorbidity of asthma is not asthmatic.

This is _exactly_ why reporters words shouldn’t be enshrined as gospel truth. If Dan Olmsted had noted he’d not found a lot of autistic people amongst the Amish and left it at that or even followed it up a bit more responsibly then there would be no problem. However, as befits a good friend of SafeMinds Director Mark Blaxill, he went in with a preconceived agenda and thus found (or failed to) exactly what he wanted.

Read more at Prometheus’ place, Autism Diva’s place and Dad of Cameron’s place.

A Few Questions For David Kirby

28 Mar

A few questions for Mr Kirby.

(All originally posted in the comments section of the above blog post)

You state that a study has recently been completed that:

showed that a few minutes of exposure with even miniscule amounts of thimerosal can damage dendritic cells, causing immune dysfunction and cytokine-induced inflammation, both of which are found in autism.

I’m aware of the study you are referring to but I am unsure of which study you draw your conclusion from that cytokine-induced inflammation is found in autism. You also fail to mention if it is a typical or rare phenomenom. Certainly it fails to appear in the diagnostic criteia for autism and a Google Scholar search for “”cytokine-induced inflammation” autism” reveals nothing. The same is also true for your claim that immune dysfunction appears in autism. You fail to state whether this is a common or rare occurance and yet again, it fails to appear in the diagnostic criteia for autism. Based on those facts, I fail to see what worth your interpretaton of this study has.

You are a staunch believer in the mercury/autism connection despite their being no symptomatic connection between merucry poisoning and autism except for that published in the oft-refuted ‘Mercury: a novel form of mercury poisoning’ paper.

Further, In the New York Times in 2005 you stated:

Because autism is usually diagnosed sometime between a child’s third and fourth birthdays and thimerosal was largely removed from childhood vaccines in 2001, the incidence of autism should fall this year.

The rates of autism did not fall that year.

A couple of months later you told blogger Citizen Cain:

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

I was puzzled enough by the discrepancy of you adding on two years to email you to ask you to clear it up. You replied to me:

Many thanks for your note. The Times misquoted me. I actually asked for a correction, but did not receive one. What I told the reporter is that we should know in the next few years.

In the interests of being thorough, I prevailed upon the two reporters for the NYT for their version of events. Reporter Gardiner Harris replied:

Prior to publication, we read the entire passage relating to this matter to Mr. Kirby. He approved it.

And reporter Anahad O’Connor said:

…we stand by that quote. David Kirby was interviewed at length, and we verified that quote and additional information with him before the article was published. He certainly did not object to that assertion at the time.

It is hard to escape the conclusion Mr Kirby, that you misled me and that you further tacked on a couple of extra years when the autism rates failed to decrease to support your original assertion. Will you now stand by your original statement that the incidence of autism should’ve fallen in 2005?

You attempted to use California DDS data to back up your continued assertion that autism rates had climbed throughout peak thimerosal useage periods and then dropped after thimerosal removal from the majority of vaccines. However, when blogger Citizen Cain pointed out you were using the data incorrectrly you conceeded:

…that total cases among 3-5 year olds, not changes in the rate of increase is the right measure.

Even a cursory glance at current and past CDDS data reveals that according to CDDS data, that cohort is still actively rising. Do you see that as another indicator that thiomersal plays no role in autism as you implied in your NYT interview?

In the course of this blog post you have made repeated mention of thimerosal still being in vaccines in the form of the flu shot. I wondered if you knew of the total mercury burden over time of mercury in vaccines?

US pre-thimerosal removal: 187.5 µg Hg.
US just flu shot: 25 µg Hg.
UK pre-thimerosal removal: 75 µg of Hg.

The US and UK have almost identical prevalence rates for autism. Given that we have very different thimerosal rates, how do you reach the conclusion that thimerosal can cause autism? Given those stats, shouldn’t US children have far more ‘full syndrome’ autism than UK children? How do you also account for the fact that even though US children are now recieving approx 7.5 times less thiomersal than they were at the height of thiomersals use the rate of autism amongst the 3 – 5 cohort is still climbing if we examine CDDS data – data that you refer to as the ‘gold standard’?

You are also a stauch proponent of the idea of there having been an epidemic of autism. You don’t base this on any science but rather what you claim to be an abscence of adults. Indeed on this very blog you asked:

But if autism is purely genetic (without an environmental “trigger”) and has always been prevalent at the same constant rate, then where are the 1-in-166 autistic 25-year-olds (those born in 1980)? Where are the 1-in-166 autistic 55-year-olds? Why can’t we find them?

You may remember that I mailed you a PDF report (http://www.scotland.gov.uk/Resource/Doc/1095/0001881.pdf) from the Scottish government of a 2004 ‘audit’ of autism. One of the questions they asked the Health authorities, Trusts etc under the national banner was:

Research tells us that prevalence rates of autistic spectrum disorder represent an underestimate. To what extent do you consider the numbers above to be an accurate reflection of all those who live in your area?

Approaching 45% of all councils/executive/NHS Trusts questioned responded that the prevalence for adults was grossly underestimated, badly reported and that a lot of these adults exist without diagnosis. A typical response was:

Figures for adults reflect the national findings that the numbers known to services/diagnosed represent a significant underestimate of those individuals likely to be affected. For example day centre managers locally consider a number of people to be on the spectrum who have had no formal diagnosis. _(Perth & Kinross Council)_

I apologise for mentioning this here but you failed to respond to my email regarding this matter.

Thanks in advance for your comprehensive answers.

UPDATE: Mike Stanton has found yet more evidence of your ‘hidden horde’:

_Liam Byrne, the health minister, said that 6,170 children under 16 had been diagnosed in England last year, compared with 3,100 in 1997-98. The number of cases including adults rose from 4,220 to 9,170 in the same period._

_So autism diagnoses for children have nearly doubled in 8 years from 3100 to 6170. Meanwhile adult diagnoses have nearly tripled in the same period from 1120 to 3000._

UPDATE No. 2: I just remembered an interesting quote from a New Scientist feature on the autism ‘epidemic’:

This view (that there are many children today diagnosed with autism who would not have been labelled as such in the past) is difficult to substantiate, but in 2001 a team led by Helen Heussler of Nottingham University, UK, had a crack. They re-examined the data from a 1970 survey of 13,135 British children. The original survey found just five autistic children, but using modern diagnostic criteria Heussler’s team found a hidden hoard of 56. That’s over a tenfold rise in numbers, which puts the California figures in perspective. Heussler and her colleagues concluded that estimates from the early 1970s may have seriously underestimated the prevalence.

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