Archive | 2006

What has autism ever done for us?

23 Oct

I was reading this article the other day where a therapist was detailing her attempts to reconcile a couple on the verge of splitting up due to the horror/abyss/hell/tsunami of autism. Its pretty depressing reading.

It’s a common refrain – how autism has affected someone’s life. Usually there’s a long list of how finances, relationships and life generally have all suffered since the diagnosis entered their lives.

To me, its all about how you approach the issues. Are you someone who sees the glass as half empty or half full? These were definitely half empty people.

I’d like to describe how autism has affected my life.

My wife and I will have been married 10 years next year. Something I consider quite an accomplishment in this day and age. We’ve had a lot of difficult times and rowed often. When Meg was diagnosed we were stunned, angry, hurting. However as we came to accept, we started talking to each other more. We started to back each other up more. We started supporting each other better. Autism didn’t only bring us a beautiful little girl, it brought us each other in a new way.

Naomi and I used to be members of a parent-oriented autism forum. There were a few good people there and a few drama queens. One couple used to complain that they now only managed to get away three or four times a year with each other for ‘little weekend breaks to Prague’. Well, boo-hoo. Poor them. I heard later that the husband of this couple had a nervous breakdown due to the stress.

Right. I hear less than five weekend breaks to Prague per year can do that to a man.

Please note: I’m not belittling anyone who genuinely has had a nervous breakdown. This guy whoever, was (is?) a primadonna without equal.

The last holiday Naomi and I had was our honeymoon. And I couldn’t possibly care less. Naomi has had a couple of breaks with the kids and her parents whilst I stayed here and worked as we couldn’t afford not to be earning. Whenever I hear biomed parents crying over the cost of all that TD-DMPS I roll my eyes and think of that old adage about a fool and their money.

Naomi and I watch DVD’s together, we talk together. We spend hours chatting after the kids are asleep. When we feel like celebrating, Megan and I walk into town, I buy some nice grub, a bottle of wine or three and after the kids are asleep (assuming they go to sleep) we put on nice clothes and have our nice meal with the TV off and the lights down. If Meg’s having a bad night, we take it in turns, a few hours each, to sit with her.

If Anthony’s over for the weekend then we sometimes play Monopoly or cards or we play along with Who Wants to be a Millionaire. I watch the American wrestling with Anthony on TV (possibly the funniest, campest thing on TV).

Because of autism, we found our family.

We have less money than we used to. I can’t pursue the heady heights of my career. Most web developers of my age and experience are head of design studios or successful freelancers. I couldn’t possibly care less. We have enough money to keep a roof over our heads, food on the table, clothes on our backs, the odd DVD collection (Prison Break Season One currently) in the player and lots of time. Because I’m not scaling the corporate ladder, I don’t have to stay late at work. I can get home before the kids go to bed. I can help my wife tidy up. Money can’t buy me the time I get to sit besides the bath as my two girls splash around in it before bedtime. Whilst my friends organise their working lives via their mobile phones, my wife’s sending me stills and video’s of the funny/cute things my kids are up to on mine.

Autism has made me more patient, calmer, confident, determined and considerate. I think I’m a better person and a better husband and father since Megan was diagnosed. So, to echo John Cleese’s classic ‘All right, but apart from the sanitation, the medicine, education, wine, public order, irrigation, roads, a fresh water system, and public health, what have the Romans ever done for us?’ I’d ask ‘Alright, but apart from a great family life, strong bonds with my wife, being a better husband, having the time to be a good dad and generally enjoying life, what has autism ever done for us?’

Message to all my readers

19 Oct

Some of you are tech-savvy, some of you less so. Thats fine :o)

What i want to tell each and every one of you about today is that Microsoft have made a new version of Internet Explorer ready and available. If you are using Windows XP you can download Internet Explorer 7 right now.

Or, if you’d rather wait, IE7 will also be coming down as an Automatic Update as part of Windows Update (the little yellow balloon in the right bottom corner that tells you updates are ready every now and then) at some point before November 1st.

I strongly urge you all to download and install this. Most of my site visitors are using Internet Explorer already (if you look at the last entry in the ‘Help’ menu of your browser and it says ‘About Internet Explorer’ then you are) so this upgrade will be pretty painless. You will download, re-install, reboot your PC and next time you use the web you’ll be using IE7. It looks a little different but all your Home page settings and Favorites are just where you left them. It also has some sparkly new features such as tabbed browsing and built in RSS feeds-reading.

Even if you don’t use IE regularly, I still recommend downloading and installing. It won’t set itself as the default browser if you use Firefox or Opera but it will mean if you ever have occassion to use IE, you’ll be using IE7.

So why do I care what browser you use?

Well, firstly, IE7 is a much more _secure_ browser. It makes surfing the web much safer than using older version of IE.

Secondly, it makes _my_ life much easier. Older versions of IE have very very bad rendering of websites, meaning that the code I and my colleagues use to build web sites doesn’t work as well as it should in IE. By switching to IE7 you’ll be helping every web developer on the face of the planet – doesn’t that give you a warm fuzzy glow? The quicker people switch to IE7, the quicker we can ditch support for old, buggy versions of IE.

Thanks for listening – once again, you can download it now or wait and get it via Automatic Update. I hope you do :o)

Autism as a medical construct

17 Oct

First off – what is acceptance?

I’ve heard tell that in terms of autism, acceptance equals resignation. But this defeatist attitude came from someone who was a self-confessed anti-vaccinationista. The truth is that acceptance is hard work. It entails a massive learning curve. It requires a heavy time investment. It entails letting go of some dearly held beliefs in favour of cold hard science. It means being realistic _and_ optimistic.

In a recent email exchange I had with a very smart guy, he said to me:

Reaching parents through the Acceptance approach how to distinguish what needs to change in society vs. what actually makes sense to attempt to change at the individual’s level, and helping them redirect all that energy towards both goals in appropriate balance, is the long-term solution.

Because you see (gasp!) parents who follow an acceptance based approach do not see their kids as utterly perfect with no need for any intervention whatsoever. That is not realistic. It is not parenting. That is abandoning one’s child to the vagaries of fate.

My daughter is far from perfect (in that developmental sense of the word). She needs educating. She’s being educated. She needs to develop life skills. We are developing life skills. Sometimes she’s genuinely naughty. When she is she’s punished. She’s not naughty due to her autism. She’s naughty because she’s six and six year olds have a capacity for naughtiness.

However, we also see the need to try and bring about development in society as well as development in our children. Autism is still seen primarily as something that primarily affects children. It isn’t. Autism is poorly understood on many levels. Educational resources for autistic children and adults are very bad in the UK and not great in the US. The idea of a spectrum of autism is still to gain widespread acceptance. The idea that the word ‘spectrum’ might not be the right concept has barely registered.

So – yes, autistic children need their parents input. Society also needs their parents input. Society also needs autistic people’s input.

My email correspondent went on to ask about how we could get people – parents new to diagnosis – to work for their children and also in society.

My answer was that education was key. How to reach parents _before_ diagnosis. Why?

The very first time ‘autism’ is used to a parent it comes from a diagnosing doctor. Because autism is still poorly understood – even by Doctors – the diagnostician may tell a parent that their child will need institutionalising, sometimes drugging, sometimes that they have no functional future. I don’t like John Best Jr very much, but the first time I heard that his diagnosing doctor had called his son a vegetable, I felt pity for him and his son. How could a doctor be so obtuse?

So when a parent hears that (and it still happens an awful lot) 9 times out of 10 a voice in their head adds on ….”unless you can cure them”…. and thus through a combo of diagnostician and the ‘hope’ of cure, autism as a medical disorder is the predominant way a parent becomes familiar with autism.

Very rarely does a parent have the strength after hearing that to keep an open mind. Find the cause, find the cure. Do not be autistic, do not collect £200. What we heard when Meg was diagnosed wasn’t anywhere near that bad and yet that’s the path we went down.

And what happens when a cause is supposedly found? This is the crucial time. This is the point a parent can become an autism advocate or an advocate for their autistic children. For a lot of people, vaccines are the cause. MMR or thiomersal based. Or mold. Or french fries. Or aliens. Or whatever. You can stop and say ‘my god, I can’t believe this’ and be swallowed whole by what I can only describe as maelstrom of anger, blame, transferred guilt and panic. SoapboxMom wrote a good post about the self-destructive side of anger and how it can turn on you and consume you. There are a few people I can think of who are very close to that point.

I’m going to quote from something yet to be published. I’ll be writing more about it in a few months but for now, this passage sums up why I think a lot of parents are angry.

I am not sure why people are so resistant to the idea that true autism rates may have remained stable over the years, and that there is no real epidemic. Perhaps they don’t want to give up on the hope that, if only we could find the cause of the ‘epidemic’ we could help these children. We could eliminate the toxins, hold big corporations accountable, do something to reverse the trend. If there is no real epidemic, we might just have to admit that no one is to blame. Their desire is understandable. But we cannot find real solutions if we’re basing our ideas on false premises and bad science.

Real solutions. How do we as a society want to treat autistic people? That question needs a solution. What is the best way to help an autistic child feel accepted, to nurture their talents and address their needs? That needs a solution. What is the best way to help an autistic child become an autistic adult with a feeling of self worth? That needs a solution. The cause of these issues didn’t originate from the barrel of a syringe and the solutions won’t come from blaming people and conspiracy theories. It won’t come from the total medicalisation of autism.

Maybe the solution might come from people who are autistic? Maybe if we listen to them, we can hear about what helped them. What was no good. What hindered them. What they care about as individuals _and_ as a particular group of people.

And maybe there are some truths that are unpalatable which must be faced.

I believe that science progresses no matter what. For good or bad, if a scientist wants to answer a question, then they will find a way to answer it or add to the body of knowledge so a like minded scientist can answer it in the future. Science has brought us the internet and nuclear bombs. Non-invasive surgery and landmines. Streetlights and the AK-47. At some point, it will bring us a genetic test for autism. I believe it is inevitable and that no matter how I might personally feel about it, or how much I might worry about how it is employed, it will happen.

I think that for things like this that protesting the development of such a thing is futile. We need to turn what could be negativity into a way to employ this. Our challenge should be to help people realise that autism doesn’t have to be something that requires a termination. Maybe a genetic test can be seen as a window of opportunity to educate parents who know nothing about autism into potential parents of autistic children forearmed and ready to work with their children and use what anger they may have against a system that is not conducive to accessibility.

MMR and statistics and science

16 Oct

Measles Mumps Rubella Timeline

Now that we have a couple of clinical papers refuting the findings of Wakefield, Krigsman, O’Leary et al – and not only refuting them but even showing exactly how they screwed up – I thought a retrospective look at the data concerning the fall in uptake of the MMR vaccine corresponds to the latest data on prevalence for autism in the UK and what it might mean for the MMR theory.

This table shows vaccination uptake rates across England. I’m going to highlight the years 97/98 – 04/05. An eight year period that starts when the original Wakefield paper was released and ends with the latest set of known data from last year. I’ll also be ignoring everything except MMR data.

Year Uptake percentage
2nd birthday in 1997/98 91%
2nd birthday in 1998/99 88%
2nd birthday in 1999/00 88%
2nd birthday in 2000/01 87%
2nd birthday in 2001/02 84%
2nd birthday in 2002/03 82%
2nd birthday in 2003/04 80%
2nd birthday in 2004/05 81%

So we can see that MMR uptake _dropped by a factor of 10%_ in eight years. Thats a pretty sobering stat.

When we look at how many live births there have been between 1998 – 2005 (inc) we see that there have been a total of 4,959,995. Ten percent of _that_ figure means that 496,000 have not (for whatever reason) received the MMR. And if prevalence (as established by Baird et al) really is 1 in 100 then we should expect to get 49,599 diagnosis of autism since 1998 (1% of live birth rate).

But, if MMR proponents are right, then we _should not_ have 49,599.autism diagnosis. We should have 45,036 (49,995 (dx) – 4,959 (10% of dx)).

To put it another way – if MMR uptake has fallen by 10% over the last 8 years, then there should’ve been a corresponding 10% fall in autism diagnosis. Has there been?

Obviously not. Bill Welsh of the Autism Treatment Trust certainly doesn’t think so:

It will come as no surprise to parents throughout Scotland that there has been a “sharp increase in autism” (July 14). The diagnosis of this devastating childhood developmental condition has increased to such an extent since 1990 that many, many families are now affected. It is very worrying that it has taken well over 10 years for the authorities at last to recognise that an autism epidemic has been sweeping the UK.

And lets not forget Chakrabarti and Fombonne who also found a high but stable prevalence of autism in the UK. Both things cannot be true. If MMR causes autism then as MMR uptake has dropped off the rate of autism cannot possibly have remained the same, unless we want to try and find a substitute that not only acts in the exact same way as MMR but also slots exactly into the numerical data, rising as MMR falls. Possible but pretty unlikely.

Megan’s Private Blog Has A New Author

15 Oct

For those people who have access to Megan’s private blog, you’ll know that I’ve failed to keep it as up to date as I should. Time pressures and all that.

Anyway – that blog now has a new author – my wife :o)

Naomi and Megan hugging

The access codes are exactly the same as they were before but if anyone has lost/forgot them then just let me know and I’ll mail them to you again and if anyone wants to join that private list, feel free to ask and I’ll post you the details you’ll need to access it.

Skeptics’ Circle 46 – My turn in the barrel

13 Oct

As Orac has announced I’m next up for hosting the Circle on the 26th October. I’ve started to receive submissions already and if anyone else fancies submitting their best skeptical blogging then please mail me.

Mark Geier, David Geier and the VSD

10 Oct

Introduction

One of the many anecdotal lynch pins of the Mercury Militia is the fabled story of what happened when the Geier’s attempted to study the VSD database.

Please bear in mind that to the Militia this story carries a *lot* of weight. It is one of the few supporting crutches left under the hypothesis that since thiomersal was removed from vaccines autism cases have gone down. Educational data has failed them. CDDS data has failed them. The Geier’s paper using VAERS (a non starter if they’d only thought about it) was so bad it couldn’t be published in a proper science journal and so this VSD story is all that’s left.

This story is enshrined in the hallowed pages of Evidence of Harm although the source of the story is unclear. Here’s the Militia version.

What The Geier’s Said

The VSD is the Vaccine Safety Database. This database carries raw data related to vaccine safety. The Geier’s were allowed access to this data, together with their computer expert Vale Kernik who would run the statistical programming tool in the SAS language that the CDC’s VSD uses. SAS is a widely used solution for statistical analysis.

The VSD’s Wikipedia page says that:

Only two outside researchers, Mark Geier and David Geier, have thus far gained access to the raw data. They faced formidable obstacles before being allowed into the CDC computer center, and then resistance from staff and software malfunctions once inside. Nevertheless, they reportedly found highly elevated risks for autism among children in the highest mercury exposure group. The Geiers study on the VSD, “A two-phased population epidemiological study of the safety of thimerosal-containing vaccines: a follow-up analysis” was published in the Medical Science Monitor in 2004 volume 11(4):CR160-CR170.

NB: This page has been edited by a member of the Geier household – against Wikipedia recommendations.

Evidence of Harm (the Kirby book) deals with the same event:

In late July the CDC informed the Geiers that the requested data set had been assembled. After paying a processing fee of $3,200, the Geiers were given two dates in August to come and run their studies. But there was another entirely unexpected wrinkle. Just two days before their appointment, a CDC technician called to make sure they were fluent in the programming language SAS, which is used in the VSD database. The Geiers had never heard of it before. “You must not be epidemiologists,” the technician said, “They all speak SAS.” If that were true it was news to the Geiers……Reluctantly they cancelled the appointment. It took two weeks to find someone who could run SAS…..They got new dates in October 2003… the dad, Vale Krenik, flew in from Texas. The were met by a woman who introduced herself and said she would be their “monitor

Evidence of Harm, p280 – 282.

And then things got very surreal. Their ‘expert’ programmer (who apparently taught himself SAS in two weeks) was stymied by the most dreaded sights for programmers – a command line interface.

How on earth can this be happening?” Mark muttered shaking his head, “Once again they got us.” Silence filled the room. There would be no number crunching today. The men stared at the screen.

Sorry. I’m being facetious. Any ‘expert’ who can’t work in a command line at even a very basic level is _not_ an expert.

The weirdness continued when the CDC monitor who was due to accompany the fearless trio for the duration of their stay popped her head out the door, looked both ways, came back into the room and:

She sat down and took a deep breath. “Don’t tell anyone this,” she said in a low voice, “But I can help you.”….I’m telling you, they know,” she said conspiratorially. “There’s a big problem”…..”The autism numbers are going down,” she said, “We are watching them drop.”

This mystery CDC monitor became known as ‘Mrs Toast’. Over on the EoH Yahoo Group, it was discussed why:

There is a woman who I refer to as Mrs. Toast. She is a CDC staffer who was responsible for monitoring the Geiers when they were instructed to visit the Vaccine Safety Datalink by Congress. When she saw the Geiers datasets, she walked out into the hallway, looked both ways, and came back into the room shutting the door behind her.

The Geiers thought they had epi-evidence. Mrs. Toast told them to look at hers. She told them she was responsible for running weekly autism datasets. She was instructed to run datasets on HMO vaccination adverse outcomes to see what effect removing thimerosal from vaccines was having on the epidemic. She had an affected child and made sure that the Geiers understood that the rates were dropping each and every week.

Author David Kirby had an interview set up, flew down to Atlanta, was in a car on the way to CDC to talk to her, but CDC had found out and they were threatening for end her career if she spoke to him.

When Congressman Dave Weldon found out about her not willing to blow the whistle on CDC’s cover-up he said, “THIS WOMAN IS TOAST!” Which is were I gave her the formal name of Mrs. Toast.

Robert Bloch, EoH Yahoo Group

Hilarious right? Mrs Toast.

And so, off trudge the Geier’s with their expert (the one unable to operate DOS). _Imagine_ their surprise when they get a letter from the CDC that said:

1) The Geier’s had violated the terms of their IRB
2) They asked how to merge datasets in a contradiction of the agreed terms of use of the data
3) They were told they couldn’t and yet they tried to anyway
4) If they had managed to merge the datasets they would have increased the risk of a breach of confidentiality.
5) The research team had attempted to rename data files to make them look like part of the SAS program (by changing the file extension to ‘.sas’)

As a result of this, the Geier’s IRB (Kasier) suspended them from undertaking any more data collection at the VSD.

The Geier’s responded by hotly denying these allegations. They first state that they didn’t violate the protocol but as Kathleen says in her exhaustive look at their reply:

The Geiers here claim to have followed the design of their research protocol, yet simultaneously acknowledge that they were attempting to conduct analyses of information not encompassed by it.

More amusingly, on page two of their reply the Geier’s state:

It is impossible for the datasets given to us by CDC to be merged

And then on page three of the same letter state:

What we were attempting to accomplish was to merge the datasets given to us by CDC to build a record…

And so the situation is now that the Geier’s pet ‘expert’ couldn’t figure out SAS, they had no meaningful results and what they did have was gained under extreme deception to the point their IRB approval was suspended.

And so, they decided to go ahead and publish anyway (well, you would, wouldn’t you?) and thus A two-phased population epidemiological study of the safety of thimerosal-containing vaccines: a follow-up analysis was born in 2005 (hereafter referred to as G05).

Geier, Geier, pants on fire?

G05 made reference to the VSD data that the Geier’s couldn’t collect/collected part of/pick your belief. In this respect it was similar to a paper written by ex-CDC staff member Dr. Thomas Verstraeten which _also_ used VSD data to look at thiomersal and autism in 2000. This paper (hereafter referred to as V00) found a statistically significant correlation between thiomersal and developmental disorders.

Oh no!!!! Doesn’t this back up the Geier’s et al?

Well, it _might_ except that as Verstraeten himself states in a letter to Paediatrics:

The CDC screening study of thimerosal-containing vaccines was perceived at first as a positive study that found an association between thimerosal and some neurodevelopmental outcomes. This was the perception both independent scientists and antivaccine lobbyists had at the conclusion of the first phase of the study. It was foreseen from the very start that any positive outcome would lead to a second phase. The validity of the first-phase results needed urgent validation in view of the large potential public health impact. Did the CDC purposefully select a second phase that would contradict the first phase? Certainly not. The push to urgently perform the second phase at health maintenance organization C came entirely from myself, because I felt that *the first-phase results were too prone to potential biases* to be the basis for important public health decisions.

Because *the findings of the first phase were not replicated in the second phase*, the perception of the study changed from a positive to a neutral study. Surprisingly, however, the study is being interpreted now as negative by many, including the antivaccine lobbyists.

So, in short, the first phase of the study using a small sample size indicated there might be an issue. When the second phase was undertaken with a larger sample size, the issue disappeared. Not uncommon in the slightest. Its standard practice to conduct a small, pilot study to see if there’s any issue to study further before committing large amounts of public money to a full scale study.

But I digress – back to the Geier’s.

They knew about the V00 paper – of course they did, it would be hard not to – and as they wrote G05 then they looked at it again. Remember that the Geier’s had struggled at the CDC VSD headquarters.

As Kathleen once again unearthed, the Geier’s – with a lack of VSD data at their disposal wrote their paper. It had some odd elements to it. Here’s a table of stats from the V00 pilot study:

And here’s a table of stats from G05:

Take a look at the numbers. Aside from one category they’re identical. Further the V00 paper states:

The final number of children thus included in our cohort was 109,993.

And G05 states:

The final number of children thus included in the cohort examined was 109,993

Woah! Spooky! By some miraculous, completely bizarre accidental coincidence, the Geier’s – who had little to no data from their visit to the VSD – have the _exact same cohort numbers and divisional figures_ as a paper written 5 years earlier resulting from a pilot study that showed a now debunked association!! What are the odds of _that_ ? I wish I knew a betting man who could tell me!

And maybe my betting amigo could tell me the odds of those same two papers having over ten more virtually identical passages and/or tables of figures? Maybe the Geier’s should drop the litigation gigs and move to Vegas and live on the strip.

A Different Interpretation

So here’s what _I_ think happened. Just conjecture but persuasive I think.

First of all, this odd SAS programming language. The CDC think its common amongst stat-fans. The Geier’s say its really really rare. Google says there are over four and a half million web related resources for SAS programming. That doesn’t sound pretty rare to me.

A leading SAS expert says:

Millions of people around the world in business, science, government, and education use SAS software to work with data. SAS software runs on many operating systems, including Microsoft Windows, UNIX, OS/2, Mac, MVS, and VMS. Most features of SAS software operate the same way in these different operating systems.

Still not sounding rare. In fact its one of the few apps that runs on Win, Mac and Unix. Not a good indicator of rarity.

And as for how quickly their ‘expert’ was defeated by SAS, SAS author Rick Astor states:

Fortunately, SAS programming is not that hard to learn.

Unless of course you’re a computer expert terrified of command lines. Vale Krenik is quoted and described on this page. His job (and former jobs) is described as:

Business Manager, Strategic Supplier Manager, Global Telecom Manager

It’s true that one of these roles has a techy requirement but absolutely _none_ can be swapped with the title ‘programmer’ or ‘expert’.

I think that the Geier’s needed someone who knew computers and settled on Krenik. When it came to it, Krenik didn’t know what the hell to do with SAS. If you’re reading this Mr Krenik, the three lines of code you need to merge datasets in SAS are available. I think they panicked and tried to grab as much data as they could in a brute force attack and then change the data files appearance to try and make them look like SAS files by renaming them with a ‘.sas’ extension.

I further think that the whole Mrs Toast episode is entirely fictitious. It even reads like a bad John Grisham novel. Bloch states that Kirby had an interview set up with the nameless Mrs Toast and that she cancelled at the last minute. Frankly, I don’t believe a word of it. I wonder who set up and then cancelled this meeting? One of the Geier’s by any chance? Does anybody know?

And then there’s the magically duplicated data. The Geier’s realised their VSD data landgrab had failed utterly and so they copied the data (and hence conclusions) from the V00 paper.

I don’t believe the Geier’s have ever seen VSD data. I don’t believe ‘Mrs Toast’ exists.

Our thanks and appreciation should go to Kathleen for the painstaking research she has assembled on the Geier’s. I know mine do.

Originally posted at Left Brain/Right Brain.

DAN! – On a mission from God

9 Oct

The Exorcist

Back in 2004, a self ordained minister (well, technically he was ordained by his brother but seeing as the ordination happened at a ‘storefront church’ I’m going to go ahead and call it a load of old twaddle anyway) killed an eight year old autistic boy, Terrance Cottrell Jr, and was convicted of:

felony physical abuse of a child causing great bodily harm

The ‘minister’ was attempting an exorcism…:

..to remove “evil spirits” of autism from Cottrell. Hemphill, who weighed 157 pounds, described how he would sit or lay on “Junior’s” chest for up to two hours at a time, whispering into the boy’s ear for the “demons” to leave his body.

This ‘man of god’ decided to appeal (de rigeur these days for those who have no sense of personal responsibility) and in August this year, his appeal was happily quashed.

I’ve written before about this story but I’m bringing it up again as I was notified about something pretty incredible – at least to me.

Jeff Bradstreet – Man of God

Dr Jeff Bradstreet is two thing. The fist thing he is, is a DAN! doctor. The second thing he is, is an expert witness in the Autism Omnibus case to be held next year.

But in fact, Jeff Bradstreet is _three_ things. Just like that compassionate driver of autism demons Ray Anthony Hemphill of the above tragedy, Jeff Bradstreet is a keen advocate of Exorcism as a treatment for autism.

No, I’m not kidding. Here’s an email message from Holly Bortfield of a pro-chelation group ‘Autism Recovery Network’ made to the Yahooo Autism Biomedical Discussion (ABMD) group in Feb 2005, the group is not open to the public so you can’t read the original unless you sign up (if you do its message 49660) but I’ve linked to a screenshot of her message:

You certainly have a right to the opinion that Jeff [Bradstreet] is the diety himself, but as a former patient and friend to a number of former patients, I can assure you not everyone holds him in such high regard. If you’d like to check out list archives from 1998 and 1999 I bet you will find the discussions of his exorcism referrals (I kid you not)…

Screenshot

When someone on the list suggested the word ‘exorcism’ was too strong, Bortfield replied (message: 49764):

Honey, that was his word not mine. I can think of a dozen people he told to have their kid exorcised

And poster Larry Leichtman chimed in with:

Actually, I heard that from him myself. He is a true believer in the devil and exorcism.

Screenshot

And not only does DAN! offer exorcism, it seems the National Autism Association heartily endorse it, as this message (49765) from Jo Pike of the NAA in reply shows:

Well may[be] its working LOL! I’ve talked to so many parents who have told me their children are improving dramatically and they all give credit to their office. Bottom line is the outcome and it seems they’re helping a lot of families.

Screenshot

And Ricci, the owner and list-moderator for the ABMD board also voiced concern in a long list of troubling DAN! traits. Its too long to quote here (screenshot here, but the lsit included DAN! practitioners who:

1) Have had their licenses suspended for overbilling insurance companies
2) Have had their licenses suspended for substance abuse
3) Have pushed MLM (multi level marketing/pyramid schemes – outlawed in the UK I believe) and lied about their involvement.
4) Received their degrees from a diploma mill in a strip mall
5) Have treated children for conditions they didn’t have and ignored conditions they clearly did have
6) Charged outrageous fees (Ricci quotes $300 for a bottle of Japanese secretin one can buy onesself for $5)
*7) Have performed exorcism on their own autistic children and recommended others to do the same*

Frankly, this is a little more than disturbing. Its crazy. Here’s Jeff Bradstreet – who the Autism Omnibus lawyers are putting forward as an _expert witness_ recommending exorcism as a viable treatment for autistic kids.

How is this man still a DAN! Doctor? Are there really people out there who are happy about this person ‘treating’ their kids? Is the American legal system seriously going to make itself into a laughing stock by admitting this man as a viable expert witness?

Site Housekeeping

8 Oct

A bit more site news on a general scale.

Firstly, concerning the Hub, following consultation with my fellow Hub members the strapline has now been changed. It was felt the old one (we don’t need no stinkin’ cure) whilst nice and pithy and punchy wasn’t really representative of _all_ of the ideas, beliefs and concepts the Hub membership had so a new one, written mainly by Dad of Cameron, has taken its place. It reads:

Autism Hub promotes diversity and human rights, with ethics and reality as the core guiding principles; aspects include empowerment/advocacy, acceptance, and a positive outlook.

which is much more comprehensive.

Secondly, I’ve made two changes to this site. The first change is the new ‘media’ page which I’ll use to collect interviews/articles etc as they happen.

The second change I need some help with. Your help Constant Reader.

I’ve introduced a wiki (see link in main navigation section at top of page) which will be used to collect, collate, explain and centralise a lot of the issues surrounding autism from both an anti-quackery standpoint and an advocacy standpoint.

Myself and a few others have made a start in bringing this material together but the more people we have contributing, the faster this project builds. Anyone who’s interested in exposing quackery relating to autism or interested in advocacy for autistic people to lead the autism community should please email me for details of how to edit the Wiki.

Crumbling science

3 Oct

Krigsman, Wakefield Error Highlighted

A study this month in Paediatrics tackles head-on the ‘science’ that is still yet to be published (a number of years later) by Arthur Krigsman in which he claims that he has found evidence of persistent measles virus in autistic kids and thus backing up the work of his business partner Andrew Wakefield.

In layman’s terms what this study did was replicate the result of Krigsman et al and then eliminate the poor science that led Krigsman to his erroneous conclusions. Of the samples that still showed as positive, no trace of MV was found.

The real-time assays based on previously published primers gave rise to a large number of positive reactions in both autism spectrum disorder and control samples. Almost all of the positive reactions in these assays were eliminated by evaluation of melting curves and amplicon band size. The amplicons for the remaining positive reactions were cloned and sequenced. No sample from either autism spectrum disorder or control groups was found to contain nucleic acids from any measles virus gene. In the nested polymerase chain reaction and inhouse assays, none of the samples yielded positive results. Furthermore, there was no difference in anti-measles antibody titers between the autism and control groups

Now thats pretty hardcore science language. I’ve emailed the authors to see if they are willing to explain (and be quoted) on an English translation of the above but in essence, the facts are as I state them above. Krigsman et al (and Wakefield before him?) failed to eliminate false positives and counted them as part of his result set. When these false positives are eliminated then the samples left contain no MV.

I’m hoping that Bart Cubbins, No Mercury, Maria, Ms Clarke et al (who are wise in the ways of this terminology) might offer more input into the meaning of the exact phraseology used and as I say, I’ve mailed the authors for clarification too. In the meantime – Krigsman’s (unpublished) work is now pretty much refuted (by published work).

Daubert’s Revenge – Martha Herbert

As reported by Autism Diva, Dr Martha Herbert has now reached the dizzy heights Boyd Haley and Mark Geier have scaled in having her ‘expert testimony’ found severely wanting following a Daubert hearing.

Herbert basically claimed that a childs autism (diagnosed by her following a differential diagnosis) was caused by mold. Yes, mold. However, upon being cross-examined:

When asked whether there is ‘any evidence that mold is a trigger [for autism],’ Dr. Herbert responded by referring to research regarding brain inflammation and immunological abnormalities in autism. Asked about research showing that ‘any of the mold or any of the mildew or any of those other things also cause brain inflammation,’ she responded ‘that’s a hole in my knowledge. In terms of autism, I don’t believe that’s been done.’

Right. Well, thank goodness she’s so rigorous. Wouldn’t want to just make assumptions right? That would just be a waste of everyone’s time right?

In another classic piece of thinking Herbert goes on to say:

Dr. Herbert commented, ‘she doesn’t have any of the known genetic syndromes, or known in-utero infections. I personally consider it symptomatic, but not in the established set of categories, in that I hope that when more research is done she’ll move in the symptomatic category.’

In other words she doesn’t know what caused the childs autism (gasp!) but that it doesn’t fit any known profile but that maybe some research at some unspecified point in the future might help categorise it (whatever ‘it’ is).

Oh, it gets better.

Dr. Herbert was asked, ‘[c]an you say to a reasonable degree of medical certainty that if Emilia Ward had been in a sterile environment, she would not suffer from autism” She responded, ‘My guess would be, yes, that she probably would not.’ The basis for that ‘guess,’ she testified, was ‘her having regressed after the mold exposure and that she gets worse with exposures.’

Wait… _guess_ – her _guess_ ? Well surely she meant ‘informed opinion’, or ‘scientific judgement based on the evidence to hand’…..except there _is_no evidence to hand:

In response to questions she acknowledged that she has never done any research on mold or mildew as an environmental toxin, and is not aware of any published peer review articles that link mold and mildew exposure to autism.

And so it is no great shock to find the court saying:

Dr. Herbert’s publications indicate that she is an outspoken advocate of increased attention to the possibility of environmental influences. Even she, however, despite that acknowledged perspective, speaks in her published work of possibilities and potentialities, rather than of the ‘reasonable degree of medical certainty’ to which she offers to testify under oath in this case.10 Neither Dr. Herbert’s publications, nor any others cited, identify mold exposure as even a suspected, still less a known or proven, trigger of autism……Dr. Herbert’s method, to the extent the Court can discern it from the materials offered, is a series of deductions based on possibilities…..*Clearly, Dr. Herbert’s method is not generally accepted in the scientific community*. Dr. Herbert’s theory of environmental triggers of autism may some day prove true. It has not yet. *Her proffered testimony does not meet the standard of reliability required by the case law*, and cannot be admitted in evidence at trial.

FDA Spanks Mercury Milita

Back in 2004, Dr Paul King of dr-king.com, uh, fame, submitted a ‘citizen petition’ to the FDA requesting:

[The FDA]…take numerous actions pertaining to vaccines and other FDA-regulated products containing thimerosal or other mercury-based preservatives….After review and consideration, we deny the petition for the reasons stated below in this response.

The response is very detailed (the whole thing is available at Kathleen’s site) but can be summed up in one quote:

The evidence on which your petition relies either does not support your requests, or is too flawed to be considered valid scientific evidence.

Which seems to be something of a growing refrain for the mercury (and apparently mold!) militia.

Damn science with its rigorous pursuit of accuracy eh? If only we could rely on opinions and guesses.

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