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Selling autism

4 Nov

It’s no secret that the Pat Sullivan’s are probably not career rocket scientists – they sell dietary supplements among other things on the internet. They probably lack understanding of even some very basic aspects of autism in my opinion but they seem to have remained benign and polite for the most part. No matter – I’m not a career rocket scientist either. I’d also like to state that I like both Pats. They always make an effort to go to the source which I find admirable.

Which is why I was disappointed by a couple of recent posts on the Sullivan blog.

Pat Jr. posting recently took issue with a post from Autism Diva which described a mercury mum as saying:

Dr Quig [Vice President, Scientific Support for Doctor’s Data Inc. lab] who sees zillion Doctors Data reports had some interesting comments: like TD-DMPS is not transdermal because it doesn’t trans the dermal! Suppositories and IV are generally more effective. He mentioned that none of these really penetrate the blood brain barrier.

Pat got in touch with Buttar to ask him about this. Apparently Buttar was pissed off in the extreme about it. Then Pat found out Buttar spoke to Doctors Data who profusely apologised and explained that:

Dr. Quig was merely saying that TD-DMPS is not good for challenge testing, something that Dr. Buttar fully agrees with. TD-DMPS is a therapeutic chelator that has the advantage of being able to remove metals slowly. But it’s the least effective for challenge tests

Uh – so? Quite aside from the point that the whole issue of challenge testing is fraught with bullshit, Quig never referred to how good or speedy a chelator TD-DMPS was, he said it didn’t work at all. Two very different things.

I’ve recently been having an email exchange with someone who was at one time very close to Dr Buttar’s practice. This person had some very interesting things to tell me about the way Buttar allegedly does business. Maybe Pat or Kevin Champagne could ask Dr Buttar personally just how much his clinic pays for the initial DNA testing he insists all new patients undergo? My source claims that he charges between $200 – _$900_ for these tests. My source further claims that these test kits are provided to Buttar’s clinic _free of charge_ from the test labs. If that’s true, then that’s a hell of a markup. Not illegal by any means but certainly very, very questionable ethical behaviour.

I was then saddened and disappointed to see the Sullivan’s start to market actively to their site visitors:

Now, I have been very, VERY careful not to ever advertise Jigsaw products to the autism community because I felt like it would give my opponents the ability to marginalize my arguments.

Possibly, but much as I like them, I’ve never found the Sullivan’s arguments to be critically thought through or scientifically supported. Possibly in an entry I’ve not read there is something.

Following that, is a paragraph about how a blogger who went to an autism conference listed a bunch of dietary supplements that, by a remarkable coincidence the Sullivan’s also just happen to sell – and are helpfully more than happy to list with clickable links to information and direct purchasing options.

Pat Jr. continues:

“So I guess this breaks my silence on marketing to the autistic community. Sorry.”

That made me a little cross. To the “autistic community”? It’s obvious that at least one Sullivan is maybe either a careless writer or apparently doesn’t understand the difference between “the autistic community” (that would be made up of autistic people), and “the autism community” (the larger community that includes parents of autistic children with money to spend or legally able to incur debt).

Sorry? What no, “we want to earn your business,” or “your satisfaction is our goal.”? All they can offer is a, “You’re a target, sorry”? Of course their motives are irrelevant. They are in business to make money. They’ll probably treat their “marketing targets” according to a business plan. In reality, their intentions say absolutely nothing about whether or not the vitamins, herbs, and lab tests they apparently re-sell do anything (or nothing) for for autism, the autistic community, or the autism community.

In fact, the reason we got involved in the autism debate to begin with was because of the near perfect parallel Pat experienced. It’s also the reason we started the Jigsaw Health Foundation with the sole purpose of providing financial assistance for mercury amalgam removal.

Is Jigsaw health going to contribute to the “autistic community” in some real way? There are
probably schools in your country that could use funding assistance and many families who need in-home education services or other assistance. There are probably autistic adults who need living or employment support services. There might even be valuable autism reasearch somewhere over there. Wouldn’t that contribution be more valid than removing peoples fillings?

As I say, I like the Sullivan’s (even though it states in my ‘evil neurodiverse’ contract I shouldn’t) but I found this glib explanation of Buttar’s skin cream and the follow up targeted sales-speak a little much.

On being considered retarded

1 Nov

Since my daughter was diagnosed, a vast range of people have aided my comprehension about some aspects of autism from a first hand perspective and have enabled me to try and apply the wider lessons from their experiences into how I interact with my daughter as an autistic person.

To me this has been the most invaluable benefit of the Internet and one that simply wouldn’t have been possible without this particular technology. Recently, technology has moved beyond words and into moving video. This has enabled some of the people I hold deep liking and respect for to let us more fully hear their opinions and thoughts.

This is vital. I fully subscribe to the idea of ‘nothing about us, without us’ which means that any organisation that purports to speak for autistic people should _fully include_ autistic people. Until now, such organisations have been able to cling to the lie that autistic people cannot hold opinions or speak for themselves. This perception is now being actively challenged.

When I first started Autism Hub, there were a number of people who topped my ‘most wanted’ list. The people I really wanted to be members. This list included Autism Diva, Joel Smith, Jim Sinclair (still not managed that one!) and Ballastexistenz aka Amanda Baggs. Autistic people who are also great teachers.

Amanda has been of particular help to me and has (is) helping me see autistic rights in the wider context of disability rights, helping me move beyond a solely medical view of autism and above all else helping me see ways I can help my daughter. Maybe not right now, but as she ages. She’s not doing this by strategies or by being a walking, talking exhibit but simply by allowing me (all of us) to read her blog and now to view the video’s she’s made and will, I hope, continue to make.

The latest one is my favourite so far. In it, Amanda talks about being considered retarded and how first impressions only really alter depending on the person doing the ‘percieving’. Amanda starts the video by saying:

People often ask me what it’s like being considered retarded, or being ‘trapped in a body that looks retarded’

This implies that retardation (what UK people call ‘learning difficulty’) is an inherently negative state and that one should not want to ‘look retarded’ or at least should be ashamed of having an appearance that resembles that of someone who is considered to _be_ retarded. One of the commenters to the video Amanda made was that ‘you don’t look retarded you look perfectly fine’. That entirely misses the point I think Amanda was trying to make; that it’s a fact that looking retarded _is_ perfectly fine. There should be no shame or inference of shame in ‘looking retarded’. To infer otherwise is deeply insulting to a wide range of people who carry that diagnostic label and should not be trotted out as a back-handed compliment.

Amanda is self-honest in an age when self-honesty is almost totally absent. Where celebs trot out fashionable ailments like binge drinking and check in for extended stays in celeb-clubs like The Priory Clinic, Amanda states quite happily that yes, she looks retarded and yes, in some areas she _is_ retarded. She’s quite happy with that and why not?

Amanda has mentioned in the past the bizarre change in attitude to her that people undergo once they know she can type. When they first see her, they think ‘retard’ with all the negative connotations that _society has saddled that word with_ and never consider that maybe ‘retard’ isn’t something to be used with disgust, or with pity. Amusingly, once they learn she can type she suddenly stops meeting that criteria in their eyes. Instant normality! Just add keyboard!!

Amanda stims, she flaps her hands, she uses a talking keyboard to communicate. But she doesn’t only become normal after the third item in the previous sentence. She’s always normal. And autistic. And if we’re talking about the speed she can process some information sometimes, she’s also retarded. Retarded is another word for ‘slow’.

We have to be careful though to clearly explain. Society has attempted to load the word ‘retard’ as an insult. It is not OK to use ‘retard’ as an insult. It should be OK to be considered retarded if one truly is however. Amanda’s strength here is de-clawing the loaded connotations of the word ‘retarded’.

And speaking of de-clawing, look for starring role of Amanda’s cat ;o) . Here’s the video:

Too far – attacks on autistic people

30 Oct

The level of debate continues to sink from the mercury militia. In various places over the web this past week or so, parents who believe vaccines caused their kids autism sunk about as low as you can get. They attacked autistic people – the same ‘sort’ of person their child is. And why? Because they don’t agree with what either they are saying or their parents or saying.

AutismWeb Forums

Over on Autism Web forums, Amanda was vitriolically attacked by two of the less stable members – sashasmom and respect (hilariously ironic username). She was attacked because she essentially suggested that death-threatening angry responses utilised by parents are not a good way to progress. This prompted sashasmom to question her autism and deride her sexuality to the point where the moderator edited part of sashasmom’s post.

It led ‘respect’ to label her input as ‘drivel’.

The hysteria on display here is incredible. If someone says something you disagree with its entirely possible to disagree with the idea and remain respectful. The notion that these two posters (both not autistic) know more about the experience of autism than Amanda as they have implied throughout her tenure on AutismWeb forums is both pathetic and laughable. Their voices are simply echo’s of ex-AutismWeb member Srinath, who called another autistic member a retard.

I personally find it deeply worrying that these people consider themselves part of any autism community.

But of course, however low one person can stoop, we all know another man from New Hampshire who can stoop lower.

John Best at AWARES

John has developed what seems to be an unhealthy interest in my daughter. I find it incredibly disturbing. More so than I can possibly convey in writing. I don’t give a stuff if he or his crowd insult me personally, I’m a big boy – but time after time he has seen fit to abuse my daughter. Who can forget his charming comparison of my daughter to a trained monkey:

My wife bought too many bananas so I’ll send some for your daughter

which came about as a result of me detailing her progress (the crime being of course that she’s progressing without chelation/ALA/megadose vitamins or HBOT).

Well now he’s stooped even lower. This years AWARES conference is well under way. John has apparently changed his stance from last year where he stated that AWARES was a made up conference solely to trap him (John has a little problem with ego and reality) and decided to attend again this year.

This time though he joined up with the username ‘Megan Leitch’ and made numerous posts abusing autistic members of the conference and pushing chelation as the only cure. When I was made aware of this, I contacted the conference administrator and after satisfying himself that what I was saying was true, he deleted all posts from that user and deleted the account.

What sort of utter coward _assumes the identity_ of a six year old autistic girl? I am in two minds at whether to follow up on this legally. I’m not sure what constitutes identity theft in a legal sense but I intend to find out. But of course this goes far beyond identify theft. To anyone with an ounce of morality, posting in the name of a child to further your own agenda is so tasteless that I don’t think there are adjectives to describe this particular act. Assuming the identity of an autistic child because you don’t like the child’s father or what he has to say is…..disturbing….

John has demonstrated moral ambivalence of many occasions, including telephone threats to women:

Lisa; Should I have Tim call you again to teach you some basics about autism that you’re incapable of understanding?

And a general dislike of women, whom he considers less intelligent than men:

Women will never be more intelligent than men although they may be smarter than men who won’t stand up for themselves.

Although it seems his wife came close to acting intelligently until John brow-beat her into submission:

I also have a wife who took two years of prodding before I could begin chelation. I finally started in May. We were also close to divorce…

And John’s approach to parenting his kids, seems to reflect his moral ambivalence to other children:

50mg 0f seroquel has worked for my son since age 5. It takes a while to knock him out but he is always tough to wake up after 8 or 9 hours of sleep. We use benadryl or waldryl(half the cost) once in a while to help knock him out sooner. We have now had two years of sleeping every night after three years of virtually no sleep. Good Luck

Seroquel is an antipsychotic neurole[ptic similar to Risperdal that:

..is indicated for the treatment of acute manic episodes associated with bipolar I disorder and the treatment of schizophrenia.

On Josephs blog post I linked to above, John got into a protracted debate with Jannalou who takes medication for ADD and told her that the medication was causing suicidal thoughts and constipation. Apparently, John has never read the fact sheet on Seroquel which states that it can cause suicidal feelings and constipation. It further states:

The safety and effectiveness of SEROQUEL in pediatric patients have not been established.

No matter how I feel about John, I would _never, ever_ stoop to assuming the identity of his son or making comparisons between his children and animals.

I see John is trying to ‘recruit’ Maria Lujan on her new blog – this is the same person of whom he once said:

I don’t believe Maria Lujan is real, nor do I beleive Not Mercury is real. I think they are just identities that your side conjured up

(Source above).

Thankfully, Maria is far too intelligent to be taken in by a low brow thug like John Best. John however, is not intelligent enough to remember the fact that he abused someone before trying to wheedle his way into their life.

There is something very, very wrong with a person who would assume the identity of a six year old girl. I can’t imagine anyone other than John’s most recent crop of neophytes thinking otherwise. In fact, I don’t event think all of them would like it.

John likes to call people who don’t chelate child abusers. I wouldn’t call John a child abuser but I’ll leave you to formulate your own descriptions of a man who feels no qualms at abusing the identities of children.

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?’

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.

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.

Open letter to Raun Kaufman of Son-Rise

30 Sep

I read your press release today Mr Kaufman and I just wanted to pass on a few thoughts to you. Your PR piece for an upcoming tour of my country begins with:

Parents of autistic children around the world face daily prognoses of hopelessness. Recent media stories highlight this: In April this year, Alison Davies, 40, leapt to her death from the Humber Bridge in northern England, taking her 12-year-old autistic son, Ryan, with her. In the U.S., Karen McCarron, 37, killed her three-year-old autistic daughter, Katherine, by placing a plastic bag over her head and then tried to overdose on over-the-counter medication a day later. She faces two charges of first-degree murder.

Every day around the world, parents like these are told that their children will never speak, attend a typical school, make friends, or even learn to dress themselves. Raun K. Kaufman tells parents something very different. He offers hope, help, and a concrete blueprint to reach “unreachable” children.

I am sickened and angry at your attempt to ‘justify’ two murders by passing them off as the end product of some alleged hopelessness. Ryan and Katie were murdered. Nothing – I repeat, _nothing_ – can justify that or make it understandable and your attempts to coerce emotional empathy from people by using their murders in so baseless a way is an appalling and reprehensible act of moral cowardice and cynical emotional blackmail. Your message seems to me to be clear: come hear me speak or you’ll end up killing your kids.

I’ve had the honour to become close with Katie’s Grandad and I would like to speak from the position of adopted family: this is not appreciated, wanted or deserved. After Katie was killed, Mike contacted Stephen Drake to let him have some photos of Katie. The terms of their use was made clear:

They do not wish for the photos to be used in any way suggesting Katie’s death is associated with a “problem” arising from a lack of services, or a symptom of “desperation” felt by other families. Using Katie’s picture in these ways would only be an insult to her memory and cause more pain to an already grieving family.

Whilst you stopped short of usurping photographs of Katie, you did the next worst thing and usurped the memory her family have. What gave you this right other than the ‘right’ you took upon yourself to emotionally blackmail parents?

You owe the family an apology Mr Kaufman. I hope you can make it sound as sincere as your pious whining about hopelessness.

Autism Podcast Interview

28 Sep

Autism Podcast Interview

Michael from Autism Podcast interviewed me yesterday. It was the first time I’d been interviewed via Skype or trans-atlantically which was a novel experience. I was a bit concerned at how well the connection would hold up with VOIP still being a technology in its infancy but I think both Michael and I were pleasantly surprised at the quality of the voice connection.

The interview itself was very interesting and thought provoking (for me anyway) – its always good to examine (or re-examine) your own ideas and motives I think and Michael asked me some good questions on the purpose and aims of the Hub as well as asking me about Megan and how we approached raising her.

I tried to lighten my voice and flatten my local accent for US audiences (my voice is stupidly deep and Midlandsy) but I still come off as a cross between Robbie Williams and Barry White. Bah.

Also, here’s a little snippet of Meg :o)

Understanding autism

25 Sep

Understanding Autism article (917kb).

I was asked by a journalist from Action Network if I would write an account of our lives with Megan and what role autism played in our family which I was happy to do. I elected to write about our familial transition from grief to acceptance and how it had benefited Meg’s progress (and ours) tremendously.

They did a bit of judicious editing (I have a tendency to waffle on occasion) and (oddly) described this site as a ‘company’ but its a good article and I’m thankful to Action Network for giving me the opportunity to speak about my favourite subject – one of my kids – without fear of encountering a stream of abuse directed towards her.

Shades Of Grey

19 Sep

Not Mercury wrote a great post on causes, cures and definitions of autism. The gist of which seemed (to me) to be that how we approach things depends mostly on how we define them but that unfortunately, definitions cannot exist independently of the subject matter and so the two things will have a continual and unending impact on each other. This makes it extremely difficult to have impartial debate.

This is especially true when one considers the medium we are attempting to debate over. I have never met _any_ of the people I consider close allies. Neither have I met _any_ of the people I consider to not be allies. We converse solely via a web interface. My job makes me painfully aware that this is not the best way to promote calm and relevant discourse.

There is also the added wrinkle that we are _all_ either autistic, the parents (or close family members) of autistic people, or people who work with autistic people. Or all, or some. This introduces an emotional component that is also unavoidable.

Leaving aside all thoughts of evidence, autism is (depending on who you speak to):

1) Mercury poisoning, ostensibly via thiomersal.
2) Vaccine related with maybe a genetic inability to excrete mercury, primarily gained from thiomersal in vaccines.
3) Genetic with a strong possibility of vaccine involvement, notably MMR.
4) Genetic with an unknown environmental ‘trigger/s’ which could include mercury.
5) Genetic with an unknown environmental ‘trigger/s’ but which currently is not indicated to be vaccine related.
6) Genetic.

That’s grossly simplifying the issues, I know that, but we have to start somewhere.

To me, options 1 and 6 are total non-starters. There’s no evidence to support these viewpoints and lots of evidence (academic and anecdotal if that’s your thing) to refute them. Also, to me, from a viewpoint of being a valid route of investigation, all other options are on the table. That is *not* to say I agree with some of them as theories, clearly I do not. I’m saying they have the potential to be correct. This is where the weight of evidence comes into play and we all make our choices depending on what speaks to us individually. I want to stay away from that evidence in this post. I want to try and focus on how our definitions influence our choices.

If we see autism as primarily an acquired thing which negatively affects people as a consequence of that acquisition then that colours our choices. We would want to remove the autism. Likewise, if we see autism as something that people _have_ but can be both negative as well as positive then that also colours our choices. We might want to remove the autism and accept the cost of losing the positives. Again, if we see autism as something that simply _is_ that has both negatives and positives then we may wish to retain the autism and try and work on the negative aspects.

So to me, the answer to Not Mercury’s post, is at its crux, the difference between something someone _has_ and who someone _is_. And how we arrive at that decision all originates from how we define autism. Advocacy undertaken by autistic people and their allies draws comparisons between gender, racial and sexual emancipation and their own neurology. Advocacy undertaken by non-autistic people and their allies paint autism as something medical to be defeated.

Having autism versus being autistic. Does it have to be an impasse?

It would seem that it does if we carry on in the same pattens. However, as long as we do this then ‘versus’ will carry on being the modus operandi of this debate.

Would it be an acceptable compromise to accept that _autism_ is a word used to refer to medical condition/s that may include such things as epilepsy, asthma, stomach/digestive issues etc etc and that _autistic_ is a word used to describe these very same people but is used to refer to who they are and _how_ they are?

We cannot escape that fact that the nature of autism often encompasses disabling comorbidities. But likewise we should not ignore the fact that autistic people have innate strengths and abilities that non-autistic people simply do not. Is it too much to ask that – *regardless of how someone came to be autistic* both these facts need to be addressed and accepted.

If someone is autistic because they are poisoned from a vaccine we still need to be very very careful regarding terminology. The fact that they are who they are is still worthy of respect and rights. If someone is autistic because of their genetic predisposition to autism and trigger X caused that potential to become fulfilled, then that reality is still worthy of respect and rights.

My video ‘Poison‘ caught some flack from people determined not to understand it. They said I was bashing the subjects. That I was taking them out of context. I was not. I did not.

However, someone else said I was taking them in the wrong spirit. That’s closer to the mark. That was intentional. Let me explain.

We cannot even agree on a definition of autism. Let alone decide how to approach treating ‘it’ (as a single entity). Hell, we haven’t even come close to knowing whether it is a single thing (doubtful). There are people on that video using some very strong, very ambiguous language. These are people who have made a point of going on TV, writing in newspapers, being interviewed on radio programs, speaking at conferences using this ambiguous language.

Not Mercury says, and I agree, that one of the things that is harmful and distasteful at the moment is people using language to imply something (and that something.s consequences) are well defined and well understood. They are not. As long as people keep giving people who are largely ignorant about autism the idea that they _are_ then ignorance flourishes amongst the people who need to understand autism the most – the people we want to accept us and our children. My child and my friends should not be demonised to further someone’s political points.

So one of the points (particularly to do with Boyd Haley, Brad Handley and Dr Geier) of the video was to hold up a mirror to the way in which ambiguous language can be used to further ignorance and bad feeling. Its become a Hollywood cliché but the saying that:

With great power comes great responsibility.

should be never more true when we consider using poorly chosen, stigmatising words to describe people. Kathleen’s petition regarding Boyd Haley’s poor choice of words is a case in point. I like to think my petition regarding Autism Speaks poor presentation and supporting justifications is also a case in point. Certainly the 800+ signatures Kathleen has received so far and the 500+ I have received bear testament that there are a lot of people out there who are very very tired of these dangerous words (Kristina calls them ‘fighting words‘) and the people who want to carry on using them to describe people.

This is not nit-picking or hair-splitting. Words have a power. Take the Pope’s recent little slip up. Did he mean to insult the nation of Islam? Almost certainly not. But he did. The reason he did is because words matter. The words chosen by Rick Rollens, Brad Handley and Boyd Haley are unbecoming of people who want to think of themselves as people concerned with helping autistic people. As I’m trying to illustrate, autism is more than a collection of medical comorbidities. Is there anyone who doesn’t think so? And if that’s true, as it surely is, then failing to use words that convey dignity, or at least using words that demean – regardless of intent – does the wider idea of advocacy no good at all. Our children and our friends are not helped by this state of affairs. We must do better.

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