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Cedillos, Hazlehursts, Snyders

12 Feb

Three brave families who were placed in harms way not by an MMR injection but by a string of bad doctors, worse autism/antivax organisations and really terrible witnesses. A combination of these three factors placed these three families – they who stood for the utterly discredited idea that MMR/thiomersal or MMR alone cause autism – into harm the likes of which said doctors and founders of autism/antivax orgs will never have to face. I recall hearing that the Cedillo’s had taken out a second mortgage on their home to enable them to attend the legal proceedings.

I wonder if the leading autism/antivax groups will have enough about them to pony up to support the Cedillo’s for the rest of their lives? They should, they hung them out like a banner to wave.

This is from the Washington Post:

The decision by three independent special masters is especially telling because the special court’s rules did not require plaintiffs to prove their cases with scientific certainty — all the parents needed to show was that a preponderance of the evidence, or “50 percent and a hair,” supported their claims. The vaccine court effectively said today that the thousands of pending claims represented by the three test cases are on extremely shaky ground.

In his ruling on one case, special master George Hastings said the parents of Michelle Cedillo — who had charged that a measles, mumps and rubella (MMR) vaccine caused their child to develop autism — had “been misled by physicians who are guilty, in my view, of gross medical misjudgment.”

Hastings pinpoints the Geier’s, Krigsman and Wakefield by name in his verdict.

And here’s Special Master Vowell from the Snyder test case:

“After careful consideration of all of the evidence, it was abundantly clear that petitioners’ theories of causation were
speculative and unpersuasive.”

….

To conclude that Colten’s condition was the result of his MMR vaccine, an objective observer would have to emulate Lewis Carroll’s White Queen and be able to believe six impossible (or, at least, highly improbable) things before breakfast.

And here is Special Master Campbell-Smith from the Hazlehurt test case:

Because the linchpin of petitioners’ theory, the finding of persistent measles virus in the biopsied tissue taken from the gastrointestinal lining of autistic children, is glaringly unreliable, the basis for Dr. Corbier’s opinion that the MMR vaccine was causally related to Yates’ autism and his gastrointestinal symptoms is critically flawed and scientifically untenable. Petitioners have failed to prove that their theory of vaccine-related causation is biologically plausible as required by the first prong of Althen. Nor have petitioners demonstrated that the unsupported links of their proposed causal chain cohere to establish a logical sequence of cause and effect as required by the second prong of Althen. Having failed to satisfy their evidentiary burden, petitioners cannot prevail on their vaccine claim.

I should be happy that science has prevailed and I am to a certain degree. The fact that the Vaccine Injury Court demands a very, very low standard of proof should indicate clearly and concisely just how good the rubbish submitted as science was for these kids cases.

I can’t be happy and I can’t take any pleasure in the fact that these kids and their families have been coldly, cynically used by those who demand against all reason that vaccines cause autism. How could any right thinking person? These parents are penniless and will no doubt be coerced into taking part in a shame of an appeal, then civil cases. Civil cases where the standard of science is very much higher. I hope they step back and consider carefully the verdicts of the Special Masters, the horrendous quality of their so-called ‘expert’ witnesses and the utter lack of any science to support them.

Age of Autism's reporter of the year 2008

3 Jan

Age of Autism’s reporter of the year for 2008, David Kirby, made something of an error yesterday. On the Huffington Post, the following headline appeared:

Obama Transition Team: “Recovery from autism is neither possible nor desirable”

You see, David was alluding to the fact that Kristina Chew and Dora Raymaker head been appointed by Change.org to be their autism bloggers. Trouble is that somehow he got the idea in his head that Change.org was actually Change.gov’s website.

Change.org is actually a social action networking site run by people who took the time to sift through the applications they received and interview those they shortlisted. They were very, very knowledgeable about the split in the autism community and decided that rather than rely on the sort of scare-mongering and factless blogging that permeates the vaxosphere they would get their facts about autism from a professor with an autistic child and (gasp!) an autistic person themselves.

Lets be clear about the size of David’s error here (in case the post is now gone I have a screenie for you to grab) davidkirbyoopsie

David has pretty much just accused the Obama transition team – without doing the most basic of fact checking – of wanting to leave autistic children to ‘a nightmare without end’.

A lot of David’s post is factless twaddle and made me quite angry to read. He (like everyone else on his side of the autism divide) states there are thousands of recovered autistic kids? Where? Where are the case studies? Certainly not in PubMed.

David claims Kristina doesn’t speak for the ‘countless thousands’ of parents he knows who think vaccines injured their kids. So? AoA don’t speak for the ‘countless thousands’ if not millions of parents that exist all over the world who don’t think vaccines cause their child’s autism.

I have a very strong suspicion in fact that David didn’t actually visit the website of Change.org. If he had he would’ve seen instantly just by the design of the site that its nothing to do with the transition team. I think some AoA bigwig forwarded on Kristina’s posts and ‘asked’ David to blog about them pointing out all the key ranty elements David mentions in a style that is not usually his.

Perhaps the most damage will be done by the paragraphs:

The President Elect has an old, dear friend going all the way back to Chicago, with a young son on the autism spectrum. That friend will soon be a Senior White House Official.

It is hard to imagine the President one day saying to this man: “I do not think we should devote resources to finding out what happened to your son. I do not believe there is anything we can do to help him, and it is not desirable to even try.

I’m afraid David, that by placing words in the President elects mouth – and utterly wrong words at that – you have demonstrated a certain hubris.

Not only are you wrong that Obama has shown any inclination to say that, Kristina Chew has shown no inclination to say that either. Unlike you, she is parent to an autistic child and you have just said that she feels it is not desirable to help her son. I hope you have the grace to apologise to her publicly as these words are far from true. Maybe you should try spending some time away from the anti-vaxxers and spending some time with the _actual_ autism community – a community who work damned hard with their children. They just don’t subject them to meaningless, expensive and dangerous experimentation.

Update
Age of Autism are obviously not HuffPo readers – they just posted their own copy of the story. And then just as quickly deleted it, but not quickly enough to beat the mighty G. aoaasses click for bigger.

Parental age is a 'risk factor' for autism

15 Dec

A story today talks about how parental age _may_ be a ‘risk factor’ (loaded phrase much?) for autism. According to the studies lead author (Dr. Maureen Durkin of the University of Wisconsin School of Medicine and Public Health):

What we found was that actually it’s both parents age, and when you control for one parent’s age you still see the effect of the other parent’s age, and vice versa,

….

After the researchers accounted for factors that might influence the results, they found that children born to mothers aged 35 and older were 30 percent more likely than those whose mothers were 25 to 29 years old to have been diagnosed with autism. Having a father who was 40 or older boosted risk by 40 percent.

The study didn’t really look at why this might be but they did do a bit of educated blueskying:

Older parents have had a longer time to sustain genetic damage to their sperm or egg cells, as well as to store up environmental contaminants in their bodies.

They are also more likely to have used assisted reproduction technologies, which have been tied to poor pregnancy outcomes. And there could be something about the behavioral traits or psychological makeup of people who wait to have children that boosts autism risk in their offspring.

Which is all a fancy way of saying: I got nuthin’ so here’s an answer that covers everything. Which is fair enough, it falls totally outside the remit of the paper to answer those questions.

So now you can expect a whole bunch of people to cast aspersions on this study, relating how really they were only 19 when they had an autistic kid and that its all a big conspiracy to detract from the evil vaccines. Whatever.

Its quite an interesting study, the most recent of many that look at (and find a connection) between parental age and autism. Does it move us forward in terms of causation? Nope. Does that really matter? Nope. Its still nice though to see science being done that is just that most important of work – the hog work that starts to fill in the blanks of the most basic facts surrounding an issue. Thanks to this study and those preceding it I think its fair to say now that raised parental age is a factor in autism causation. Not always but sometimes.

Another interesting bit of blueskying:

The findings could also help explain why autism appears to be on the rise in the United States, the researchers added, since the percentage of children who are born to mothers 35 and older and fathers 40 and older has risen steadily since 1980.

I think this is a very interesting hypothesis to follow up on and I hope someone does. But first of all of course we need to establish _if_ autism is ‘on the rise’. Many people will tell you there’s an epidemic of autism but there is in fact no valid evidence to support this supposition. I hope some evidence can be forthcoming. We need it.

Another autistic child murdered

20 Nov

The Wisconsin State Journal reports that 12 year old Kyle Dutter was murdered by his dad..

He wasn’t killed. He was murdered. His dad, his own father, put him in the car, drove him a distance and then shot him. This coward then turned the gun on himself, thus at least saving Kyle’s family the sort of horror and recurring tragedy that the McCarron family had (and still have) to face following the murder of Katie.

On Tuesday, an anonymous 911 caller directed Madison police to a sport-utility vehicle parked in front of Haen Family Park on the city’s Far West Side. Inside, police say they found Dutter and his son with gunshot wounds.

Kyle, who had a developmental disability, died that day. His father died Wednesday. Authorities say Dutter, 36, recently of Middleton, shot his son, then himself.

There is a website for Kyle which shows an excitement about Hallow’een. There are also a collection of photos on the website showing Kyle and his killer.

There can’t be any excuses for this. None. Kyle’s killer may well have been suffering from financial pressures or other kinds of pressure and the locality may well have had a severe lack of appropriate autism services – so what? That is no excuse – and never should be – for picking up a weapon and taking away someone _elses_ options and life. Kyle had a mother. Why not simply take Kyle back to her? What about Kyle’s grandparents mentioned in the article? There was no need for this.

I have a 16 year old son who is just beginning to spread his wings in the world. Kyle Dutter is another in what is a unnervingly long line of autistic children who will never have that opportunity, an opportunity denied to them by the very people who should be providing it to them.

Sunday Solutions – No. 5

19 Oct

Another review rather than tutorial this week. This time its an idea that seems really stupid – until you actually need and use it, and then its invaluable.

Simply Checklists does exactly what it sounds like, it provides a well thought out set of checklists for just about every situation you may need one for – from getting married, to baby sitter information to stocking a first aid kit.

Now you’re probably thinking (like I did the first time I saw it) – this is stupid, who needs this? But believe me, when you’re trying to get organised and you realise you’ve forgotten a key piece of the puzzle, this site will help you.

Now, this site doesn’t help with _autism_ checklists but it does help you take care of everything else, leaving you free to concentrate on the needs of the autistic person in your life (even if that person happens to be you). And of course, nothing is stopping us, the autism community, from maybe creating our own version of this site.

Sunday Solution – No.4 plus update

12 Oct

No PDF to download this week. Instead I want to post my own review after I saw one from Mashable today about the excellent Savvy Auntie website.

As the name suggests Savvy Auntie is a way to keep Aunties (and grandmas, grandads, uncles, cousins, friends – not to mention parents) very firmly in the loop as to what is cool for kids in terms of presents and gifts. You can sort by price, age, colour – even personality!

However, these are not the best bits of the site. the absolute best bits are the Social Web (Web 2.0 for you Old Skoolers) aspects of the site. They have given all users the ability to ask actual parents about the toy in question – quite reassuring. So you as a user can leave reviews, star products, recommend toys for particular sections such as the Special Needs section. There are also forums, blogs etc if you really want to get involved.

Savvy Auntie is basically Amazon for toys/gifts – but an Amazon that is organised, nicely laid out and easy to navigate. Its going to grow so getting in now will reap you dividends.

Now – a minor update. Left Brain/Right Brain has its own Twitter account but now for you radicals who don’t Tweet but do use something else, we’re there too – so if you use Meemi, Pownce, Gozub, Plurk, Identica, Rejaw or Hi5 search for user ‘lbrainrbrain’ and you’ll get our updates too.

Autism genes = genius

6 Oct

Fascinating report in the Sunday Times yesterday about how the same genes that confer autism also confer the skills necessary for genius:

…a study of autism among 378 Cambridge University students..[]..found the condition was up to seven times more common among mathematicians than students in other disciplines. It was also five times more common in the siblings of mathematicians.

And this from Patricia Howlin:

Patricia Howlin, professor of clinical child psychology at the Institute of Psychiatry at King’s College London, studied 137 people with autism; 39 of them (29%) possessed an exceptional mental skill. The most common was outstanding memory.

She said: “It had been thought that only about 5%-10% of people with autism had such skills, but nobody had measured it properly, and it seems the number is far higher. If we could foster these skills, many more people with autism could live independently and even become high achievers.”

This, to me, is simply confirmation of two things that I believe in – firstly that autistic people have much more ability than people think and that respectful and appropriate education will help and secondly, the scientific method will always reveal the truth sooner or later. It cannot be hurried to be accurate. There is a saying amongst Web Developers when clients ask for the impossible – cheap, fast, good. Pick two. The same thing applies in science I think. You can have it cheap and fast and it won’t be good. Etc, etc.

This is yet more evidence that the continual doom and gloom about autism perpetuated from certain quarters simply isn’t reality. There are, in fact, key skills that our civillisation needs that it seems autistic people have in abundance (try and imagine a world without maths).

Respect, self-confidence, appropriate education. Pick three, please.

Outcomes for autistic people

3 Oct

If I had a penny for everytime so know-nothing mercury zealot told me that by not chelating my autistic child (or HBOT/Lupron/Coconut kefir/Foot detox/clay bath/whatever) I was condemning xyr to a miserable life I could retire early.

My response has always been the same – ‘you’re full of what makes the grass grow green’.

I’m of the opinion that what makes the biggest difference to an autistic child’s educational prospects and hence their adult lives is how you teach them both formally (speech therapy etc) and informally (to be self-confident, to be told off when they are being naughty, to not feel that their stimmy behaviours are bad etc). So it was a pleasant surprise to come across this news article today.

She interviewed 41 adults, spending eight hours with the now 22- to 46-year-olds and their parents or spouses, assessing whether they would still be considered autistic, since the standard has changed. She tested their IQs and evaluated their quality of life.

McMahon and Farley were surprised to find half were doing better than what parents and teachers thought was possible. They had full- or part-time jobs. A few are married and have children. They have friends or acquaintances. One man is no longer considered autistic, having taught himself how to interact by watching movies and reading books.

I know what you’re thinking – these were adults with Aspergers syndrome, right? Well, no. These adults who were diagnosed with _autism_ between twenty to forty years ago (1968 – 1988) when the DSM II and then III would’ve been in effect.

DSM II (1968)
[autism was not mentioned; the word appears only under the following category]

295.8 Schizophrenia, childhood type

This category is for cases in which schizophrenic symptoms appear before puberty. The condition may be manifested by autistic, atypical and withdrawn behavior; failure to develop identity separate from the mother’s; and general unevenness, gross immaturity and inadequacy of development. These developmental defects may result in mental retardation, which should also be diagnosed.

DSM III (1980)

Diagnostic criteria for Infantile Autism

A. Onset before 30 months of age

B. Pervasive lack of responsiveness to other people (autism)

C. Gross deficits in language development

D. If speech is present, peculiar speech patterns such as immediate and delayed echolalia, metaphorical language, pronominal reversal.

E. Bizarre responses to various aspects of the environment, e.g., resistance to change, peculiar interest in or attachments to animate or inanimate objects.

F. Absence of delusions, hallucinations, loosening of associations, and incoherence as in Schizophrenia.

First things first. I severely doubt if _any_ of these adults received _any_ of what would be considered biomedical interventions today. Why? Simply because the idea that a vaccine could cause autism wasn’t around in 1968 – 1986. The youngest would’ve been twelve when Wakefield first started his foolishness.

So what we have, it would seem, is a 50% ‘recovery’ rate (based on what biomeddlers consider recovery) with the only basic interventions being education and time. One of the subjects is interviewed:

Pond says he felt alone and unaccepted growing up. Struggling to understand what was going on in grade school, he would blank out so intensely that adults worried he was having seizures. As a teen, he wished he could take a pill to make his disorder disappear.

Something else that wasn’t around so much in those days was a neurodiversity movement. If there had of been, maybe this poor guy would’ve been able to realise that people who would accept him were there. Its testament to his own strength and will (and the support of his parents no doubt) that he made it to where he is now.

But – there’s always a but – this same follow up found that 50% of these people:

But the other half live in group homes or with parents. They may have jobs but need supervision. They have few to no friends. One works as a janitor two hours a day and returns home to his rituals: watching movies and routinely checking for the mail.

Not ideal, but to be honest, its hardly terrible either. I very much look forward to the study being formally published. In the meantime, this is yet more evidence of the innate strengths autistic people have. Its much deeper and much more pronounced than anyone could ever have thought.

Mother Warriors – the cost

26 Sep

I recently posted an entry about the health costs being one of Jenny McCarthy’s Mother Warriors can exact on the Mother Warrior in questions kids. It was a pretty horrific litany of blown veins, heavy medications and screaming kids being restrained by adults in order to receive IV Chelation. Sometimes in babies as young as 13 months.

Today I thought we might take a look at the range of treatments on offer and how, in order to be a true Mother Warrior, you are expected to know them all.

Stan Kurtz recently produced a list (PDF) of the typical treatments one of Jenny McCarthy’s Mother Warriors are expected to know and use. There are a mindboggling 150+ different treatments.

Of course, a parent is not supposed to use all 150+ in one go. No, they are expected to use the ones that ‘work best’ for them. This is of course under the care of a DAN doctor – who sometimes might actually be a doctor, sometimes they might not.

In reality, what we have is a list of things that are used on a trial and error basis. There is absolutely no way to know which are having an effect and which are not. Even the most simple test of – is my child ‘less autistic’ than they were before is not an accurate judge. It is well know that autistic kids improve with age and to be perfectly frank, most of the ‘recovery stories’ I’ve read are stories of kids who are still very much autistic and really not in a very different place than my own.

A Mother Warrior on her blog reports the cost of ‘recovering/curing’ her autistic child:

$15,039

Here’s the breakdown:
DAN Doctors $2000
GI Doctor $6000
Private Labs $2000
Supplements & RX $2000
Speech & ABA $3000

Additionally, we spent $500 for respite care once a week (a special needs babysitter). We also paid an unknown amount in expensive GFCF foods, like $6 per bag of wheat-free pretzels….

In 2008, we will add the additional expense of IV chelation at $320 a month.

And how do they describe their child now?

After implementation of the gluten-free, casein-free (GFCF) diet, our son regained eye-contact and lost the repetitive behaviors. Six weeks after initiating an anti-fungal drug to counter the yeast overgrowth in the intestines, our non-verbal almost three-year-old child began to speak and gesture. He gained 120 new words in two months. We supplemented specific vitamins and minerals, and we saw evidence of his immune system starting to respond properly. After treating the gut inflammation with anti-inflammatory drugs, he began to eat a better variety of foods and started toilet training.

………

He is now four years old, and he speaks in simple sentences. He has mastered letters, numbers, colors, and shapes. He sings songs and laughs at humorous things. His demeanor is sweet and cute. He will attend preschool with his peers this fall. All of his special education teachers and therapists are amazed by his unprecedented progress.

I always feel deeply saddened when I read stories like this. This is just simple development and education. I know so many autistic kids who are at similar stages of development and/or could report near-identical things. And yet these parents have near bankrupted themselves for no real reason.

This is far from an unusual situation. A 2005 survey reports:

The mean number of current treatments being used by parents was seven….

These parents are bankrupting themselves and the DAN fraternity et al are watching the money come rolling in.

Getting back to Chief Mother Warrior McCarthy. Apparently in her new book and on Oprah she veered between describing her son as ‘recovered’ and ‘recovering’:

…And lets get back to where this started. Jenny said her son Evan, HAD autism.

This surprised me because in her both of her books she repeatedly says he is IN RECOVERY or RECOVERED from autism. She doesn’t ever say CURED – though it is implied. In her book she says that if/when he is sick – his symptoms of autism resurface. So, then it is not really ‘gone’, right? And all the biomedical treatments did with him (the gfcf diet, supplements, threelac, b12, [chelation/HBot]) does she no longer need to do these? I’m just thinking out loud.

This isn’t the first time McCarthy has cut her message to her audience with no regard for the accuracy of what she’s saying:

So, in April 2008, Evan McCarthy is recovered (‘we believe what helped Evan recover…’). Not recovering but recovered. We can also see that among the treatments the helped Evan ‘recover’ is ‘detox of metals’.

Fast forward two months later and apparently Even needs chelation. Why? Back in April he’s recovered. Now he’s not? Now he needs chelation?

Apparently, at the last Autism One conference, McCarthy was asked about the expense of treatments. She answered:

I just need you guys to be creative in your thinking and say we’re going to give up Starbucks this year.

Does anyone you know have a coffee habit of $15k per year?

Jenny McCarthy isn’t living in the real world. A massively well-off celebrity lecturing people to give up a coffee in order to finance a totally fabricated treatment schedule that she can’t decide from one month to the next has cured her son or not? And people _listen_ to her? People give her _credence_ ?

Katie Wright was interviewed by Jenny McCarthy for her new book. Another rich Warrior Mother who doesn’t live in the real world where scrabbling to make ends meet is the first priority. Not ‘living in the moment’ and not really having to worry about where the next months food is coming from.

Warrior Mothers? These people have fought for nothing.

Jenny McCarthy's Mother Warriors

24 Sep

Jenny McCarthy’s bullshit-fest starts up again today. Look forward to her and Jim Carrey on various US talk shows.

Her new book is called ‘Mother Warriors: A Nation of Parents Healing Autism Against All Odds’ which is equally amusing (mother warriors?) and, well, bollocks. A nation of parents healing autism? Really? Where? I’ve been having this conversation with the autism/antivax loons for over five years now: show me the kids who were once autistic who are now cured by biomed? And I don’t mean your sisters best friends cousins kid, I mean case studies. I keep hearing that there are _thousands_ of these kids – surely some doctor treating them somewhere thought – hey, a case study would be a good idea.

And this definitely includes Chief Mother Warrior McCarthy herself and her somewhat loose definition of what ‘healing autism’ is. I posted awhile ago about how Chief Mother Warrior McCarthy had described her son as recovered (as oppose to recover_ing_) in April this year and then go on to describe how she was planning to chelate Evan in June 2008. Why? If he’s recovered, why is the poor lad being subjected to chelation?

Meh, cup and ball trick much?

So, I thought – given that Chief Mother Warrior McCarthy is doing it – that we might take a closer look at chelation in the form of quotes from Mother Warrior’s on the CK2 (Chelating Kids 2) Yahoo group. I’ll say up front, it makes pretty grim reading but I think people need to know what exactly being a Mother Warrior entails. These are all from different people.

It just takes time. My twins (almost 8 now) have been doing IV CaEDTA roughly every 2 weeks for over 3 years (71 and 78 IVs). The first half-dozen or so were really traumatic, then the kids started realizing it really wasn’t so bad after all and got to the point where they didn’t need to be held anymore, then they didn’t cry anymore, etc.

My son is 6 and I have to hold him down for the IVs – we’ve done 10. Today he got poked 3 times and has purple hands from blowing veins. As I’m lying on him, both of us sweating with 2 nurses trying to do the IV, I’m thinking is is worth it?

I used to give my son a valium before the IV’s when we first started. We had to give him 15 mgs when he was about 90 pounds.

We give my son 300 mg of L-Theanine 90 minutes prior to the IV…

We are considering IV chelation with our almost 7yr old. We started with nutritional IV’s just to see how he would do. THe first one was rough the second was a piece of cake. My Mom instinct tell me they made him feel better…

We do IV chelation on experienced regression during the first 3 or 4 months. I would consider them “healing” regressions, though because he didn’t stay in a regressed state and always came out of the regression….

Now these are bad. Blown veins, chelation over periods of years, kids being medicated to calm them down from their obvious terror. But these next are worse.

Any thoughts or experiences with chelation on children under 16 months? The child in question was tested moderately mercury toxic….

My 15 month old son had a porphyns test by Phillipe Auguste labs that showed very high lead and mercury that spiked off the page, so our DAN is starting him on DMSA suppositories once his OAT test comes back demonstrating that he’s medically stable enough to chelate…

We actually began chelating our son at age 2

And the absolute crowning horror. There aren’t words for this last one so I’m just going to quote it. Remember – this is an example of McCarthy’s Mother Warriors in action describing a process she was going to try on her own son.

I started chelating my son at 13 months of age w/ IVs. Dr Bradstreet’s office chelates little kids. It was actually easier to give him the IVs before he turned 2. My DAN, Scott Smith, says that kids under 3 chelate much faster and it is a good idea to start early.