Archive by Author

MMR and Metal Studies – Empty Discussions

28 May

Two new (not sure what to call them) papers? Abstracts? Press releases? Came out this week concerning autism and vaccines. Also, one _actual_ study was released.

Study number one is entitled…well, actually, as far as I can tell, it doesn’t have a name yet. The first draft (which I saw in October last year) was called *Porphyrinuria in childhood autistic disorder*. The authors are Robert Nataf, MD Corinne Skorupka, MD, Alain Lam, BSc , Anthea Springbett, PhD, Lorene Amet, DPhil and Richard Lathe, DSc.

Richard Lathe is the heavy hitter in this bunch. He’s quoted in New Scientist as saying:

It’s highly likely that heavy metals are responsible for childhood autistic disorder in a majority of cases

New Scientist.

Strong words. However, as I said at the top of this piece, this study has not yet even been published yet. The only scientists who’ve read it are the scientists that performed the study. As far as I know, its not even been accepted for publication by Toxicology and Applied Pharmacology. I _do_ know it was submitted to The Lancet and I’m guessing as the authors moved on to Toxicology and Applied Pharmacology that it was rejected by The Lancet.

I can’t discuss the science as it may have changed since the first draft I have a copy of. In the absence of the science, we can’t really discuss much of any importance.

However, we can take a look ‘behind the curtain’ at some of those names can’t we?

_Lorène Amet_ is an Editor of Medical Veritas – a journal that PubMed does not, as far as I know, index. MV’s ‘mission statement’ includes:

MV…recognizes that medical modalities promoted by public health departments and authorities are often compromised by conflicts of interest with pharmaceutical companies and other political and personal agendas. These areas of detrimental influence include, but are not limited to, the following: vaccinations, pharmaceutical drugs, pregnancy, childbirth and child care practices, treatments for cancer, AIDS and other diseases, food additives, pesticides and herbicides, water fluoridation,d ental procedures, including amalgams, medical procedures and surgeries

Nothing like going in with a preconceived agenda eh? That’ll help with scientific objectivity.

Ms Amet’s colleagues from Medical Veritas include Mohammed Ali Al-Bayati, who doesn’t believe HIV leads to AIDS, as well as someone called Kenneth P. Soller, MD who I’m guessing is Kenneth P. S *t* oller, MD – our new friend who likes HBOT for autism and who tried to smear Paul Shattuck and Andrew ‘Wakers’ Wakefield.

Source – NB: there is at least one person who is now deceased listed on that page.

Here’s some snippets from Ms Amet’s CV:

In the process of setting up an Autism Treatment clinic with the charity Autism Treatment Trust (former Action Against Autism). Principal Scientist.

(UK version of Generation Rescue led by Bill Welsh)

Received DAN! (Defeat Autism Now) doctor accreditation, Dec., 2005. Initiated and organised with Action Against Autism a conference called Treating Autism, Edinburgh UK, October 14-15, 2005. Participated to two clinic days with Dr. McCandless and Dr. Usman (16 children with autism). October 16-17, 2005.

Well, I guess we should all be reassured at how impartial any study featuring a DAN! practitioner and Editor of Medical Veritas will be. I sincerely hope their study has moved on since the first draft.

The second study/paper/abstract/thingy does at least have an actual title. It’s title is: *PERSISTENT ILEAL MEASLES VIRUS IN A
LARGE COHORT OF REGRESSIVE AUTISTIC CHILDREN WITH ILEOCOLITIS AND LYMPHONODULAR HYPERPLASIA: REVISITATION OF AN EARLIER STUDY* which is a bit of a mouthful. It basically claims to substantiate Andrew Wakefields earlier findings with the MMR vaccine.

Yet again, however, despite this being reported in at least two mainstream newspapers, it should be noted that the actual study has not been published. It will be discussed at the upcoming IMFAR conference in Canada but no-one has seen the paper yet. The presentation could not even legitimately be referred to as an abstract yet.

The authors are: Steve Walker, Karin Hepner, Jeffrey Segal and Arthur Krigsman.

There appears to be a fund raiser for this study on the website of the NAA where Andrew Wakefield and Jeff Bradstreet (who apparently used to recommend exorcism for autistic kids) are listed as ‘consultants’.

Lets not forget that the NAA have made a big deal of ‘outing’ Paul Shattuck’s non-existent connection to Merck so I wonder if we’ll be seeing them play the ‘conflict of interest’ card in the case of this study? Doubtful I’d guess.

However, the big connection here is Thoughtful House, Andrew Wakefield’s project. Steve Walker, one of the authors listed above, is on the board alongside such scientific luminaries as, uh, Martie Maguire of the Dixie Chicks.

A keen eyed observer might also note that one of the other authors is a partner of Andrew Wakefield’s. This hardly instils a great deal of hope in the objectivity of this paper.

So there’s our two non-papers which we can’t really discuss the science of as none has been made available. However, that hasn’t stopped people from going ahead and reporting on them as if it were.

The third bit of news from the autism/vaccine issue is (gasp!) an _actual_ paper, which has been peer reviewed, submitted and accepted for publication in a decent journal. Its title is: *Is There a ‘Regressive Phenotype’ of Autism Spectrum Disorder Associated with the Measles-Mumps-Rubella Vaccine? A CPEA Study.*

And what does it say?

There was no evidence that onset of autistic symptoms or of regression was related to measles-mumps-rubella vaccination.

Of course, that story doesn’t get mentioned – its not as interesting as wild speculation.

The Judge Rotenberg Center

26 May

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

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

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

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

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

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

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

Source

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

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

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

And then from an ex-employee:

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

Source.

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

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

Source.

These are just the things that have been discovered.

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

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

and

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

and

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

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

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

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

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

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

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

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

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

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

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

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

Katherine ‘Katie’ McCarron

23 May

This is about the third draft of this post that I’ve written. The others were too angry or too sad to be constructive or valid. This is an awful story for numerous reasons. First, Katherine was three years old. Little more than a baby. Secondly was the manner of her death. Her mother took a plastic bag and suffocated her with it. I am finding it difficult to move past the awful reality of how terrified Katherine must’ve been in her last few minutes alive.

Katherine was autistic. Her mother was a doctor. Friends are quoted as saying that she spent time on forums helping other people. As far as her child went, it seems she was deep into the ‘treatment’ option. A post touching on Katherine’s death confirms that McCarron was a supporter and purveyor of biomedical treatment:

Dr. McCarron (a pathologist) was asking me for my experiences with the Geier protocol. (her daughter Katherine was not on the protocol….She was a friend of FAIR’s medical director, Dr. Ayoub… and pretty friendly with Julie, our research director (with whom she’s had several phone conversations). She is such a smart lady… and caring person/loving mother who knows so much about biomed, I had actually thought to invite her to JOIN FAIR!

A friend of hers states:

Meanwhile, Karen McCarron had busied herself in an effort to find clues to the puzzle of her daughter’s autism. “She read every book. She was trying so hard, pursuing every lead,” the friend says.

I wish that Karen McCarron had not been looking so hard for clues to the puzzle of her daughters autism. I wish instead that she had concentrated on looking for clues to the reality of her daughter. I wish that she had read the recent paper on acceptance bringing benefits instead of reading every book, pursuing every lead to find clues to autism. Her friends go on to say that she had become disillusioned and worried as Katherine seemed to ‘begin regressing’. Up until then she had been attending a specialist autism clinic in North Carolina. I wonder what sort of clinic it was. Maybe it was this one with what seems to be a TEACCH style program. Then again, with someone who ‘knows so much about biomed’ it seems doubtful. Who knows for sure? Not me.

The upshot of all this was that…

The setback only exacerbated Karen McCarron’s difficulty in accepting her daughter’s condition, her friend says. Unlike coping parents of autistic children, McCarron did not go through a grieving process.

This grieving process is necessary. Jim Sinclair in his outstanding essay Don’t Mourn For Us says:

Some amount of grief is natural as parents adjust to the fact that an event and a relationship they’ve been looking forward to isn’t going to materialize.

This is true, but as Sinclair _also_ states, one has to separate grieving for an _event_ and grieving for the _child_, which is not healthy.

…But this grief over a fantasized normal child needs to be separated from the parents’ perceptions of the child they do have: the autistic child who needs the support of adult caretakers and who can form very meaningful relationships with those caretakers if given the opportunity. Continuing focus on the child’s autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them.

It sounds like McCarron was unable to separate the event from the child and the quoted submerging herself in the ‘effort to find clues to the puzzle’ certainly bears that out.

The great tragedy in writing this piece is that I’m aware that I know much more about Karen McCarron than I do Katherine. No paper has written a piece about what she liked to do. No paper relates what her favourite toy was, or if she liked to rock in front of the TV. I try to think of her doing these things as a way to stop thinking about the way she died. However, I have read lots of pious exhortations to pray for Karen McCarron. The pompous piety of such drivel makes my stomach churn and reminds me of other deaths of autistic children where there were calls for prayers for the family and scant sympathy for the dead child concerned. This may be a first (and possibly last) for this blog but I totally agree with Lenny Schafer when he wrote in a recent SAR:

….when a child is killed there more is involved here than a debate over the proper level of support services families deserve to expect. The first and foremost response to the news of such horrible things of a child being so destroyed should be moral outrage. The first reaction should not be “oh poor mom, if she only had better services. . .” The primary cause of death of that girl, and too many others like her, was not lack of services. To either say or imply so is the saddest of distortions — and such sentiments helps shift responsibility for these acts away from those who perpetrate them. An abstract concept about levels of service did not put a plastic bag over the head of little Katie to smother her — a real human being did so.

I wrote at the top if this post that aside from the sadness, I feel anger. I’m trying to temper that down but I am angry with the immediate association my mind made when I heard about Katharine’s death.

On 9th may, Autism Speaks, an organisation that has no autistic members at board level, released a short film called ‘Autism Every Day’. If you want to view it, you’ll have to google it as I’m certainly not going to link to it.

This video has to be seen in its proper context. Its a fundraiser. Its a way of soliciting money from people via pity and tragedy. Having watched the film I was struck by several things.

The film is entirely negative about autism. The opening scenes consist of autistic kids having meltdowns. No one seems to be addressing the fact that autistic kids are susceptible to changes in routine and that hence the cameras and crew are probably deeply unsettling.

At one point in the film, a young autistic girl a couple of years older than my daughter tries to retreat the refuge of her room. The director takes it upon himself to get a camera to follow her. The result is both predictable and probably considered great footage.

The editor seems to believe that no men are concerned about autism. I spotted two Dads (I presume they were Dads). The vast majority of the film interviewed women. I guess its easier to solicit money when you can create the belief that the autism community is parented mainly by single mothers.

The most chilling part of the film came when one of the mothers talked about how she had considered killing herself and her autistic daughter. She related this whilst her daughter was in the room. She concluded this segment by saying that the only reason she didn’t do it was her NT child.

This film was released on May 9th and consequently shown on the US nationally broadcast Don Imus show. Katherine McCarron was murdered by her mum on the 13th.

No one is claiming parenting children is easy. It is not. No one is claiming that parenting children with special needs is easy. Its not. But at some point we have to say to ourselves – yeah OK, this is hard. We have it harder than parents of NT kids…..so what?

Moving past and getting on is as easy or as hard as you want to make it. I don’t want pity. I don’t want sympathy. What I want is understanding. Genuine comprehension. Cynically manipulative pieces like ‘Autism Every Day’ will not aid comprehension. It does not show reality. It shows the bad things. A lot of the bad things in this piece seemed induced either purposefully or by ignorance. I am not saying bad things don’t happen, I am saying they are _far_ from the whole story.

Katherine didn’t live long enough to live in acceptance. Her mother was so intent on autism, she never saw the autistic child. She decided that at three years old Katherine had had her chance and that she, as her mother, was a fit person to judge her undeserving of more life. Autism Speaks? No. ‘Autism’ was never given a chance to speak in this case. Autism’s parent removed that option.

My daughter is three years older than Katherine McCarron was when she died. At three Katherine and Megan were probably very similar. I don’t know if they shared the same interests or not but I hope they did because Meg is one of the happiest children I know. What she does ‘every day’ makes her happy.

I want to share some aspects of Megan’s life with you all – one of the things she likes the most and one of her favourite songs. I want you to see that ‘autism every day’ is not black or white. I want you to see that our children live in a place where their potential is just the same as everyone elses’s. Nobody deserves to die at age three. Especially for the pathetic reason that they happen to be autistic.

As you watch my daughter, please remember Katherine McCarron. I hope she had a favourite song and some days in the sun.

Beautiful Autism – WMV file (Windows Media Player), 30mb download, sound required.

The Shape Of An Elephant

17 May

Remember this old Bhuddist parable?

Five blind men of Savatthi are all describing an elephant. The problem is that one grabs the tail, the other a leg, the other the side, the other an ear and the fifth, the tusk. Each, remaining blindfolded, seeks to articulate the attributes of an elephant. The one who grabbed the tail insisted that the elephant was like a rope. The one who grabbed the leg was as certain that an elephant was not like a rope, but a tree. The one who was feeling the side of the elephant was convinced that an elephant was like a mud baked wall. The fourth blind man, feeling the ear, was shocked that the others could not understand that the elephant was like a banana leaf. The fifth denounced them all as he held to the tusk, insisting that an elephant was most like a brandished sword.

Every time I hear talk about the ‘autism epidemic’ I remember this parable.

The only way we can _definitively_ establish if thiomersal (or any other vaccine ingredient) causes autism is to take a hundred kids and do a double blind study involving injecting them with either an applicable amount of thiomersal containing vaccines or a control over an established time period.

Obviously, thats never going to happen. Firstly there are the obvious ethics of such a thing – with the prevailing beliefs about what autism is, no parent is going to risk ‘causing’ autism. Secondly there is the more practical reason that there aren’t really any thiomersal containing vaccines left in the West anymore – hence Burbacher’s need to get vaccines and then _add_ thiomersal to them. I suppose our ficticious study could do that but nobody really knows what confounders there may be in such an action. Burbacher certainly didn’t control for them.

So, what else can we do to try and establish if thiomersal (or whatever) can cause autism?

We can examine the symptoms of mercury poisoning (in the case of thiomersal) and see if there seems to be a relationship with autism. This is in essence what the Bernard et al paper tried to do. They concluded there _was_ a link but a closer examination of the paper shows that there is _not one_ common symptom between the diagnstic symptoms of mercury poisoning and the DSM(IV) diagnostic criteria for autism. This fact usually results in two counter-claims. Firstly that the DSM(IV) is not ‘up to the job’ of reflecting the current state of knowledge about autism. Secondly, that autism is such a novel form of mercury poisoning that autism is totally different from all other forms of mercury poisoning.

The first objection is essentially a call to retro-fit the DSM(IV) to fit one persons own beliefs about autism and thiomersal. This is pointless. The DSM criteria (which _are_ periodically adjusted) reflect the symptoms it requires to fulfil a diagnosis of ASD. This means the symptoms are common to _all_ autistic people. People have quoted gut issues, constipation and various other issues to me as ‘evidence’ of the damage resulting in autism, that thiomersal can do. Trouble is, none of the things that get quoted at me are common to all autistic people. These things may be comorbidities. If people have found ways to treat debilitating comorbidities then more power to them I say. I do exactly the same every time I administer a puff of a ventolin inhaler to my daughter. People then go on to say, well, maybe we should start sub-dividing autism into different ‘types’. However, we have no idea what prevalence these ‘sub-types’ might have. As far as we know they might only exist in statistically insignificant numbers that wouldn’t justify a sub-type categorisation. One of the biggest comorbidities is epilepsy. Should we create a sub-category of ‘epileptic autism’. Why? The underlying autism would be just the same. No – this is the very reason why secondary conditions are called comorbidities and not subtypes.

The second theory – that autism is so unique it doesn’t resemble any other form of mercury poisoning – is very hard to take seriously. Anorexia appears to be common across all types of mercury poisoning (its mentioned in Mad Hatters Disease, Pinks Disease and typical mercury poisoning) – why would it skip autism? Occams Razor applies here. The simplest explanation is one which requires no mangling/disappearing/ignoring of known facts – autism doesn’t really resemble mercury poisoning.

So whats next? Epidemiology. We’re left with looking at the numbers.

The ‘autism epidemic’ is central to the thiomersal hypothesis. The argument goes that as thiomersal useage increased both temporaly (vaccines were administered in shorter time frames) and in amount (maximum body burden in the US was 187.5 ug of Hg) that the number of autism diagnosis increased.

The main problem with the epidemic idea is that this chain of events is _far_ from established. The reason is mainly the quality of the underlying data.

There are three main US sources for prevalence data – the Dept of Education, VAERS and CDDS.

Many autism advocacy groups use the data collected by the US Department of Education (USDE) to show a rapidly increasing prevalence of autism. Closer examination of these data to follow each birth-year cohort reveals anomalies within the USDE data on autism. The USDE data show not only a rise in overall autism prevalence with time but also a significant and nearly linear rise in autism prevalence within a birth-year cohort as it ages, with significant numbers of new cases as late as 17 years of age. In addition, an unexpected reduction in the rise of autism prevalence occurs in most cohorts at 12 years of age, the age when most children would be entering middle school. These anomalies point to internal problems in the USDE data that make them *unsuitable for tracking autism prevalence*.

Source.

This is a shame but Jim Laidler is absolutely correct that we must use good, accurate data – USDE data clearly isn’t.

VAERS has massive problems. It allows anyone to enter any data at any time. I recently demonstrated this when I, a UK citizen, managed to submit a VAERS entry stating that a vaccine had turned my daughter into Wonder Woman. Clearly, this is not an acceptable source.

CDDS is the most contraversial. Rick Rollens has toally misintrpretted the data time after time. CDDS themselves state that their data should not be used for tracking autism prevalence. However, if it is insisted that we _do_ use CDDS data then we need to be clear about its use. Rick Rollens lumped all stats from all age groups together – quite obviously this results in meaningless data. As David Kirby conceeded:

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

When one does isolate this cohort things are very different. In this cohort, nnot only are autism cases still rising, in the last quarter, the increase in the rate of increase is climbing.In other words, when one uses the correct group of cases to examine, data that David Kirby has referred to as ‘the Gold Standard’ for testing prevalence, shows that autism cases are still rising despite his statement in the New York Times in *2005* that:

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

However, despite all this, we need to rememember that CDDS disclaimers appply to our interpretation of the data as well as Rollen’s or Kirby’s. However, ours are more accurate and at least are preformed on the right section of the data.

Make sure to read Joseph’s first comment in this thread which addresses another failing of this data I forgot to address.

So there are very large problems with the epidemiology as well. This is vexing and means, as Paul Shattuck recently concluded, that the true growth of autism cannot be realistically determined. So we’re left with the opinions and research of experts – people who study autism. What do they say?

Almost to a man they say that the idea of an epidemic is questionable. They state there may well have been a rise in _numbers_ but not necessarily a rise in _prevalence_. The distinction is important.

What they say is that improved tests and more recognition adds up to more diagnosis. This is simple common sense. If you know what you’re looking for, you’ll find more of it than you would if you _didn’t_ know what you were looking for.

What do we know that might support this opinion? Here are a few ideas from my neck of the woods.

In 2004, an ‘autism audit‘ was performed in Scotland. One of the questions the audit asked was how accurate they thought the prevalence rate estimates were for their area. 45% of authorities who responded made a point of noting that they felt diagnosis for adults was very underrepresented. For example, Perth and Kinross council stated

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

Also, in a New Scientist piece last year, the findings of the University of Nottingham were reported. The team reexamined data from the 1970’s which resulted in five diagnosis. Using modern diagnostic criteria, the team found 56 cases, a ten-fold increase.

Lastly, earlier this year, Health Minister Liam Byrne reported figures that demonstrated autism diagnoses for children have nearly doubled in 8 years from 3100 to 6170. Meanwhile adult diagnoses have nearly tripled in the same period from 1120 to 3000.

That seems to pretty firmly establish the idea of widescale underdiagnosis. What about misdiagnosis? From its very start as a categorised diagnosis, autism has been misdiagnosed. Kanner mentioned several of his patients were diagnosed with schizophrenia. However, as Shattuck _also_ concluded, its not possible to ascertain to what degree diagnostic substitution in the past has resulted in more cases now we know better.

A fascinating news article caught my eye this morning and led to this post. It seems that even _after_ we factor in more availability of diagnosis and better tests for it, most doctors still don’t screen for autism because a lot don’t know how.

The study of 255 Maryland and Delaware pediatricians found that 209 (82 percent) said they regularly screen their patients for general developmental delays, but only 20 (8 percent) of them said they regularly screen for ASD. Of the pediatricians who said they do not routinely screen for ASD, 62 percent said they didn’t do it because they weren’t familiar with the screening tools.

Source.

Remember that this is in a time when awareness and screening tools are better than they’ve ever been – if they’re like this now, just imagine how bad they must’ve been 10, 15 or 20 years ago.

Do you see a rope? A tree? A wall? A leaf? Maybe a sword? Or do you put these things together and percieve an elephant?

Pediatrics Letter – More Misrepresentation

10 May

On the 5th May a Letter from Kenneth P Stoller appeared in Pediatrics.

UW-Madison researcher Paul Shattuck concludes that special education figures being used are “faulty and do not substantiate such a claim” (that there is an autism epidemic). Paul Shattuck seems to be saying that all the reported autistic children have always been here, they were just called something else.

Shattuck makes no such conclusion. In a clarifying comment on Scienceblogs, Paul Shattuck stated:

Unfortunately, the media and some advocacy groups have distorted what my article was all about. I was quite explicit in the article that A) my work does not prove or disprove the existence of an epidemic and I think that is still an open issue….My number one goal was to raise awareness about the limitations of the special ed. data.

As a pediatrician, who has been in practice for over two decades, I find it more than a little insulting as well as disturbing to have someone say that these children were always there.

Several pediatricians do not find it insulting. Suniti Chakrabarti for example – who diagnosed my own daughter – co-authored a paper with Eric Fombonne which confirned a high but stable prevalence for autism. There are also several interesting studies that indicate that ASD has historically been very underdiagnosed.

In 2004, an ‘autism audit‘ was performed in Scotland. One of the questions the audit asked was how accurate they thought the prevalence rate estimates were for their area. 45% of authorities who responded made a point of noting that they felt diagnosis for adults was very underrepresented. For example, Perth and Kinross council stated

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

Also, in a New Scientist piece last year, the findings of the University of Nottingham were reported. The team reexamined data from the 1970’s which resulted in five diagnosis. Using modern diagnostic criteria, the team found 56 cases, a ten-fold increase.

Lastly, earlier this year, Health Minister Liam Byrne reported figures that demonstrated autism diagnoses for children have nearly doubled in 8 years from 3100 to 6170. Meanwhile adult diagnoses have nearly tripled in the same period from 1120 to 3000.

The idea of ‘insult’ is irrelevant to the substantiation of a case. And yet again, Shattuck made no claim that ‘these children were always there’. Such purposefully misleading statements entirely invalidate Stoller’s case.

As a scientist, I find the current approach to the autism epidemic – “The Emperor’s New Clothes” approach – to be deeply disturbing.

Appeals to authority do not make one automatically correct. I’m sure there are several people who could say that ‘as scientists’ they question the idea of there being an epidemic of autism at all. That wouldn’t automatically make them right either. What does lend their viewpoint some weight as the fact that the science supports their opinions.

For years the vaccine division at the CDC and others have said the reason for the dramatic increase in autism is due to “better diagnosing” and “greater awareness.””They have encouraged those like Paul Shattuck to manufacture uncertainty.

This is quite simply yet more purposefully misleading rubbish. This study was funded largely by the Autistic Society of America. Paul Shattuck has also stated his affiliations with the CDC quite clearly:

As for the $540,000 from the CDC…it’s not entirely clear what they are talking about. I certainly don’t have a grant that big from anyone. They are probably talking about the autism surveillance grant that our center received from the CDC…a proposal which I helped prepare but am not listed as a co-investigator and am not funded from….I do have a small grant for about $12,000 from the CDC to investigate racial and socioeconomic disparities in the timing of autism diagnosis and service utilization.

Why Stoller indulges in such flagrant misrepresentation is not apparent. I am forced to conclude in the absence of a good reason, that Stoller has nothing to fall back on other than annoyance that Shattuck’s conclusions did not meet his beliefs and thus he felt it necessary to resort to distortion and spin.

There are no studies that have found the previously undiagnosed or misdiagnosed autistic individuals among older Americans. They simply aren’t there.

Mr Stoller is once again making assumptions. I have found no studies in PubMed that even attempt to pose this question, let alone answer it. How Stoller concludes there are none when no studies have sought an answer to this question is bewildering. I would like to suggest Mr Stoller examines the evidence from the three UK sources I quote from above. The US and the UK have a near identical autism prevalence. It seems reasonable that older patterns of prevalence might follow suit.

Now, the increase of autism has been linked to the increase in mercury exposure through fish and industrial sources, amalgam and additionally, through increased parenteral exposure to ethylmercurithiosalicate.

Its also been linked to alien invasion and plastic cups. Surely a scientist understand the concept of correlation not equaling causation?

A recent study, using infant Macaca fascicularis primates exposed to injected ethylmercury or those exposed to equal amounts of ingested methylmercury, showed that ethylmercuy was retained twice as much inorganic mercury in their brains in comparison to the methylmercury exposed primates.(Burbacher T, et al. Comparison of blood and brain mercury levels in infant monkeys exposed to methylmercury or vaccines containing thimerosal. Environmental Health Perspectives, 2005 Aug:113(8):1015-21.)These primates were exposed to mercury levels at a rate equal to what children in the United States received via standard childhood vaccines from 1991- 2003.

What’s not often discussed about the Burbacher study is the interesting point that the group did not use thiomersal containing vaccines. They used non-thiomersal containing vaccines and then added thiomersal to them. It is difficult to know how this fresh preparation compares with vaccine formulas when thimerosal is part of the manufacturing process and may have suffered some degradation to inorganic Hg in the vials before administration.

Cysteine and glutathione synthesis are crucial for mercury detoxification, and are reduced in autistic children, possibly due to epigenetic polymorphisms.

The Deth paper made no such claim. The basic gist of the Deth paper is that various toxins, including thimerosal, affect methionine synthase activity (a process that helps in building proteins) and that this can adversely affect children. In short, the Deth paper alleges that thimerosal causes methionine synthase dysfunction (MSD). However, autism and MSD are entirely dissimilar.

Therefore, autistic children have 20% lower levels of cysteine and 54% lower levels of glutathione, which adversely affect their ability to detoxify and excrete metals like mercury. (James, S.J. et al.: Metabolic biomarkers of increased oxidative stress and impaired methylation capacity in children with autism. Am. J. Clin. Nutr. 80, 1611-1617 2004).This leads to a higher concentration of free mercury in blood, which then transfers into tissues and increases the half-life of mercury in the body, as compared to children with normal levels of cysteine and glutathione. As was shown by Bradstreet et al (Bradstreet, J et al.: A case control study of mercury burden in children with autistic spectrum disorders. J. Am. Phys. Surg. 8, 76-79 2003) in a study involving 221 autistic children, vaccinated autistic children showed about 6 fold elevation of urinary mercury than normal controls after appropriate mobilization with the chelating agent DMSA.

And so we get down to it – Bradstreet and JAPANDS. A man who recommends exorcism and a journal who don’t publish errata or retractions. Great. Next!

Stoller then goes on to describe a whole host of things thiomersal apparently does without ever stating the fact that none of these things appear in the diagnostic criteria for autism.

This is an unconscionable oversight failure at best, at worse it is an example that we have left consensus reality to be created by the liars, thieves, cheats, killers, and the PR junk scientists they employ.

Quite a statement from someone who has actively misled people regarding Paul Shattucks connections with the CDC. I would put forward the idea that a PR junk scientist is one who isn’t even able to research the simplest of facts and instead concentrates solely on misrepresentation and spin. As for killers, its my opinion that Dr Roy Kerry is a great example of a DAN! protocol follower.

We are living in a time where an incredible overplay and lies and self-aggrandizing behavior and non-science is the norm.

Stoller has no argument from me there. He would seem to me to be living embodiment of that statement. He cites studies from people like Burbacher who’s ‘science’is funded by SafeMinds – a group whos mission statement is to establish a causal relationship between vaccines and autism. He cites people like Deth who are listed as expert witnesses for the prosecution in the omnibus proceedings against vaccine manufacturers.

Is it stretch to realize that by putting our heads in the sand about the autism epidemic we have made it possible for the groundwork to be put in place for Marshal Law?

Er, yes. Yes it is.

No something easy to contemplate? Then ask why haven’t pediatricians come forward to demand the end of the use of ethylmercurithiosalicate once and for all, and to advocate for the treatment of these children before it is too late?

Simple: they realise that the science doesn’t support your beliefs Mr Stoller. They understand the massive societal benefits of vaccination – a benefit being well demonstrated now that vaccine uptake is falling thanks to your scare mongering as Mumps epidemics sweep your country and measles epidemics resulting in 12% hospitalisation and at least one death so far sweep mine.

Stoller declares no conflicts of interest and yet in his signature he describes himself as a member of the International Hyperbaric Medical Association. This treament is a favourite of DAN! practitioners – people who profit by ‘treating’ autism – and yet there have been no published randomized controlled trials for low-pressure hyperbaric oxygen therapy as an autism treatment yet. Only one paper exists in Pub Med relating to HBOT and autism which blogger Dad of Cameron found at least one significant error in.

Mr Stoller establishes once more his propensity to bend or totally shatter facts by claiming no conflict of interest when it is clear he supports a therapy being widely utilised for profit on autistic children. Throughout this whole letter he willfully and (one must assume) knowingly misrepresents people like Paul Shattuck, relationships between people and institutions. He quite clearly has little knowledge of the limitations of the science he quotes as backing up his beliefs and then goes on to rage about ‘PR junk scientists’ whilst he promotes the use of a very expensive treatment with no established – or even reliably investigated- appreciable effect on autistic children.

Autism Hub News

7 May

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

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

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

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

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

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

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

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

JB Handley – Interweb Genius

3 May

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

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

JB Handley, EoH.

Woah! Pretty impressive!

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

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

No, not really. I hope its clear why.

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

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

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

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

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

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

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

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

Let’s see how well its doing shall we?

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

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

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

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

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

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

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

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

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

JB Handley, EoH

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

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

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

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

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

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

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

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

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

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

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

CSS Reboot – Guest Reviewer

2 May

Well, the CSS Reboot is upon us once again and I thought given the prestige of the occasion, I’d hand over to a guest reviewer to review some of the entries in the Reboot.

Please welcome Guest Reviewer – Johnny Nice-Painter.

Oh hello my fellow artists….how very lovely it is to be here reviewing such a prestigious event as the CSS Reboot amongst all you young people. You may know I’m something of an artist myself, although I have to say I utilise the more conventional approach of a nice canvas and water colours. I daresay that sounds terribly old fashioned.

Anyway, lets move on shall we? Katie has my tea and medication waiting for me and I don’t want to be late…so who’s first Mr Leitch?

Oh ah, young Prabhath from Nidahas…what an exotic looking web page that is! How jolly nice! Did he win? No? Why? Because he didn’t pay to get his design listed on the front page? I don’t understand Mr Leitch – you have to pay?

Oh, only some people can pay – those who can afford it I presume – not those who come from developing countries with other priorities I would surmise…? How very strange. Anyway, which lovely website should I look at next?

Oh, ah Standards Rule…well now thats jolly nice too, what a lot of talented people we have here Mr Leitch!…what’s that? Look at the ‘source code’…whatever for? Ah…I see – using a table for layout purposes – I thought this was a CSS competition? It is? Oh dear. I don’t understand, I’m afraid. Admittedly, an old man like me can’t keep up with the latest gizmo’s and jeejaws but even I know that calling a website ‘Standards Rule’ and rebooting in a CSS competition whilst using a table for layout is a bit…well, its not cricket is it eh?

Shall we just go straight to the CSS Reboot home page Mr Leitch? No? Why not? What do you mean ‘no reason’, that sounds a bit silly – lets just click the link and…..

oh….

….there’s an awful lot of black isn’t there…….

….oh dear…Terry Ng, David Longworth, John Protasiewicz, Bryan Veloso, Doug Gibson…….

black……BLACK!!!!

ah……Christian Montoya….ARRGGHHH Christian Montoya AGAIN!!!! BLACK!!!!

You lock me in the cellar and feed me pins, where shall we sleep tonight Mother? On Father’s grave?

Alex Graul….Jonathon Snook….

They wait for me in the woods…

VEERLE MADE IT GOOD BUT IT MAKES ME SAD!!!

The black…..ITS EVERYWHERE!!!!! I MUST HIDE IN THE WARDROBE OF SUBTLE PLAGARISM DARKNESS!!!

Well…sorry about that. I guess all that black was a bit much for poor Johnny. I know how he feels.

‘Acceptance Therapy’ In Action

27 Apr

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

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

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

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

The results of this paper were:

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

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

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

and

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

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

Initial reactions to parenting a child with a disability

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

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

Family Strengths

This is a quote from a service provider:

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

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

Neurodiversity, Acceptance and Cure

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

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

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

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

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

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

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

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

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

Hasten the day :o)

Of Rashid Buttar and Stephen Hawking

23 Apr

I was recently sent the following link (thank you JNB ;o) ) which announces the creation of the ‘Cutler Hawking Project’. At first I suspected the formation of some soft rock combo but a quick glance at the site in question soon alleviated my doubts.

The majority of people need very strong evidence before they start believing in non-mainstream treatments, and this is the reason why we decided to contact Stephen Hawking to convince him to try Andy Cutler’s chelation protocol – so he can serve as an example. Confining him to a wheelchair since his mid 20’s, Mr. Hawking is a brilliant and famous English physicist who is suffering tragically from Amyotrophic Lateral Sclerosis, a disease caused by chronic mercury poisoning. Now 63, he can only speak with the help of a computer voice synthesizer.

Oh, it gets better.

The reason why we selected Mr. Hawking is because of his very unique situation. If we convince a man of his mega-stature in the scientific community to try Andy Cutler’s protocol and he subsequently recovers from such debility, that would convince even the biggest of skeptics. Because Mr. Hawking has been confined to a wheelchair for such a long time, and since he is so famous, no doctor could come up with another reasonable excuse for his recovery, and no doctor could write it off as a faked illness, as it would be too obvious that the mercury amalgam & vaccine issue is real and that Andy Cutler’s mercury chelation protocol really works. Mr. Hawking would be living proof! There is no other person in the world that could make a stronger case! It makes a dynamic difference when you see a celebrity talk about a certain treatment, and see that person get out of the wheelchair after 35 years and walk again, and we believe that news channels would report on this “miracle” worldwide!

OK, so here’s a group of people who believe first and foremost that a whole range of things are caused by mercury poisoning – autism, bad backs, and apparently Motor Neurone Disease has now joined that elite group. Lucky lucky Professor Hawking. Why lucky? Because chelation will cure him!!! Yay!!!!!

Except…neither Amyotrophic Lateral Sclerosis, nor indeed any other forum of neurone disease is caused by mercury poisoning. The official line is:

The cause of ALS is not known, and scientists do not yet know why ALS strikes some people and not others…in searching for the cause of ALS, researchers have also studied environmental factors such as exposure to toxic or infectious agents. Other research has examined the possible role of dietary deficiency or trauma. However, as of yet, there is insufficient evidence to implicate these factors as causes of ALS…Future research may show that many factors, including a genetic predisposition, are involved in the development of ALS.

Sounds strangely familiar doesn’t it?

And so we’re presented with the mental picture of some fairly odd people attempting to bother a sick old man just so they can try and persuade him to undergo some therapy. Nice.

And yet, it’s still not as bad as another treatment I heard about. Apparently Dr Rashid Buttar, adored by mercury boys and girls all over the world, the man who can cure cancer and reverse old age as well as cure autism with skin cream recommends another intriguing treatment for young kids – and this time, he’s not confining it to autistic kids: oh no, this ones good for _everyone_ :

Have any of your tried, or even heard anything about, doing urine shots to help the immune system? I don’t know much about it yet, but I know you use your child’s own urine, and filter it with special filters, before injecting it into their hip. I’ve heard really good things about it from a friend who tried it.

No, its not a joke. The answers came thick and fast:

I only know this was described to me to be a procedure used by Dr. Buttar about a year ago when my son was his patient, but the nurse said it would require an extended stay near the clinic and we live in Texas. We never tried it and moved on to another doctor.

Leslie, Chelatingkids2.

I’ll bet you did Leslie.

This was recommended by Dr. Buttar’s office for my NT son who has tons of allergies. I believe Dr. Imam in NY does it. It sounded too “out there” for us so we are currently sticking with justchelation for him.

Sangeeta, Chelatingkids2

Yeah, just chelation. That’s not ‘out there’ at all.

My grandson went through this beginning in October. It was a once a week treatment for 10 weeks. Before he began, he had lots of allergy problems that would often advance into sinus infection and ear infections. It’s almost April and he has not had one problem since. The only thing that I see is an occasional stuffy nose that lasts only a very short time.

andreagrammy.

Just in case you think you read it wrong, you didn’t. Rashid Buttar and others recommend taking some of the childs urine, filtering it and then injecting it back into them. This is apparently good for the immune system. Yummy.

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