Archive | 2007

Sick of the Dehumanising

28 Sep

I am utterly sick of Jenny McCarthy and the TACA urges to autism Yahoo groups members to bombard radio/TV stations where she is appearing with pictures of kids, telling them to tell the TV stations there kids are ‘recovered’ whether they are or not:

More help is needed to show the cynical world children with autism ARE getting better. They ARE recovering!. If you have a recovered
child or a child that is near recovered, has benefited HUGELY from biomedical intervention please read and consider the following.

WE NEED RECOVERED KIDS – families need to send in their stories and pictures of their recovered child or children. What is needed – Before and After pictures for kids who recovered from autism. (IT IS IMPORTANT TO SAY: I give permission for these photographs to be on air with Larry King 9/26/07 – include parents name & phone numbers with the childs first name only to appear.)

See? Doesn’t matter if your child actually _is_ recovered – or even recover _ing_ – just being a biomed user is enough to ‘prove’ recovery according to Julia Berle. The media spin is sickening. The attempt to utterly mislead people is sickening.

I am also utterly sick of hearing SafeMinds, the NAA, A-Champ and all those other soccer mom, white, upper-middle class me-me’s having the gall to say that a study that makes it clear in its abstract that it has nothing to do with autism is misleading the public about autism. This coming from groups who have incited violence against honest scientists and who have blatantly lied about these same scientists affiliations – with no apology or retraction – and who have paid journalists to write nonsensical, non-scientific propaganda on their behalf.

Further, I am sick of the Sally (I’m sorry, I can’t bring myself to carry on typing that ‘look at me’ version of her first name) Bernard’s of this world who – even when invited to help design a study and who are happy to do so, don’t possess the moral fibre to stick with the study they helped design because it didn’t produce the results they wanted. And not only that, have the temerity to complain about the design of the self same study – _which they helped design without a word of complaint until it produced results opposite to her beliefs_.

Lastly, I am utterly, totally sick of the casual dehumanising of my daughter and people like her – autistic people – who are now happily being described by Jenny McCarthy’s pet quack as soulless.

Well, screw this, I’ve utterly had it. What I want to do is give Kartzinel a big loud and clear blast. And I need your help to do it. I also need the help of your friends and your friends friends.

I want to produce a video to post to YouTube which will be an utter refutation of such unbelievable crassness. I want to collect a picture of every autistic child who’s parent rejects the description Kartzinel gave for autistic children. They do not need to be named if you don’t wish to do so. They will not be identified. They will just be present. Please send me your photos to kevleitch@gmail.com. Please pass this request on to your friends. Please make sure this arsehole understands that referring to our children in this way is not acceptable.

Jerry Kartzinel’s Attack on the Dignity of Autistic People and their Families

28 Sep

I have just learned from a blog named The Quirk Factor that some guy named Jerry Kartzinel, claiming to be a doctor, has stated the following in the introduction to Jenny McCarthy’s book.

 “Autism, as I see it, steals the soul from a child; then, if allowed, relentlessly sucks life’s marrow out of the family members, one by one. It relegates every other “normal” thing to utter insignificance.”

This is an irresponsible and reprehensible statement to make, obviously. It’s not hard to imagine how statements like this in a highly publicized book could lead to an autistic child being institutionalized or worse.

But it is even more reprehensible because it is a complete fabrication. Can Jerry Kartzinel demonstrate his claim is true? I highly doubt it. In fact, let me propose something. If Jerry Kartzinel can successfully demonstrate, by means of peer-reviewed evidence, that his statement is mostly true, autism-specific, and not dependent on parental beliefs, I will publicly apologize to him. If not, I would suggest that he needs to apologize to autistic people and their families.

While there is some evidence that families of autistic children, like families of children with other disabilities, tend to have higher than normal levels of stress, the preponderance of the evidence suggests that these families experience resilience and adaptation by developing positive views on disability.

For example, King et al. (2006) found the following.

“The themes indicated that raising a child with a disability can be a life-changing experience that spurs families to examine their belief systems. 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.”

Bayat (2007)  identified “specific resilience processes, such as: making positive meaning of disability, mobilization of resources, and becoming united and closer as a family; finding greater appreciation of life in general, and other people in specific; and gaining spiritual strength. “  It then concluded that “a considerable number of families of children with autism display factors of resilience–reporting having become stronger as a result of disability in the family.”

Twoy et al. (2007) revealed “the resiliency and highly adaptive nature of these parents who are under severe strain and stress of caring for a child with ASD.”

Bristol (1987) had found that poor adaptation in families of autistic children “was predicted by other family stresses, unwarranted maternal self-blame for the handicap, and maternal definition of the handicap as a family catastrophe.”

It is clear from these studies that adaptation improves as parents change their views over time in the direction of a positive attitude toward disability. Self-blame for autism, and viewing autism as a horrible nightmare will tend to make adaptation difficult. From these findings, I would suggest that parents who believe in an “acceptance” or “neurodiversity” type of model are better able to adapt and cope. On the other hand, parents who accept the sort of claim Mr. Kartzinel promotes, ironically, could very well end up as he describes in his statement.

McFungi

28 Sep

From the transcript of Larry King’s interview of Jenny McCarthy last night on CNN:

KING: What is autism?

MCCARTHY: Wow! Well, it differs for a lot of people. But — or opinions. But I believe that’s — it’s an infection and/or toxins and/or funguses on top of vaccines that push children into this neurological downslide which we call autism.

Source

McInfection?
McToxins?
McFungi?

Vaccines?

Since she’s not talking about what autism “is”, rather, what might be speculated about with regard to etiology…maybe it can be the smoke. I’m not saying it is, just suggesting that it’s one possibility.

As all of you know, being a mother changes you in ways that you never thought you could imagine. I went from chain smoking and eating cheeseburgers to Hepa air filters and eating vegetarian after my son was born.

Source

Emphasis mine. Here’s a couple of mildly interesing abstracts (in the links) for Jenny.

“The risk of autism was associated with daily smoking in early pregnancy (OR = 1.4; CI = 1.1-1.8)”

Source

“Maternal smoking during pregnancy is linked to high fetal testosterone (FT), and an increased risk in offspring for autism…”

Source

Rumours that the Observer’s Editor will get the push because of the paper’s MMR idiocy

28 Sep

I’m sure readers of this blog will remember the jaw-dropping idiocy of the Observer and Denis Campbell’s recent front page MMR/autism coverage. I’ve been preparing a post looking at how the Observer’s inaccurate 1/58 figure for UK autism prevalence has spread through the Internet (encouragingly, it looks like a good proportion of bloggers and mainstream journalists have been bright enough not to swallow this nonsense) when a little birdy forwarded me this intriguing – but unverified – piece of gossip:

Keep an eye on the Observer over the next weeks. The rumour in the week that editor Roger Alton had got the push/resigned not entirely without foundation as there is now a huge wedge between the Guardian and The Observer…This is the result of news ed Kamal Ahmed getting to keep his job – the result of an investigation into the embarrassment over the MMR splash that wasn’t a story of two months ago…The Scott Trust got involved, editor Roger Alton had to go to before them and receive six of the best like a naughty schoolboy.

It’s interesting that it has had to come to this: when I discussed some of the problems with the Observer’s autism coverage with their Readers’ Editor, he was clear that the decision on whether to retract the Observer’s embarrassing autism coverage (or issue a proper apology) was for the Editor to make, and Alton had chosen not to issue a retraction. If this rumour is correct, it looks like Alton may be paying the price for failing to retract an embarrassingly poor-quality piece of ‘journalism’.

Hopefully the rumour is accurate, and Alton will face the consequences of his actions. I think it is entirely appropriate that – if a newspaper Editor publishes something both stupid and damaging on their front page, then refuses to retract the story – their career should suffer as a consequence of this. It is also encouraging if the Scott Trust has got involved in dealing with this mess, and has taken decisive (albeit slightly slow) action. The Quackometer’s Observer Apology Counter makes it 11 weeks without a proper apology for or retraction of the Observer’s MMR idiocacy – maybe a new Editor will be able to deal with this mess before the counter goes past unlucky 13?

UPDATE: now also blogged by Shinga, here.

Crowds.

28 Sep
 

  I would like to make this plain, I don’t want to make it rude

 But when talking of the small talk, well, I’m just not in the mood

 I have absolutely nothing against your personality

But I wish that just for once you would not sit by me.

 I am trying very hard to stop the sense of panic

As the noise it gets much louder and the scene becomes quite manic

 And I think I’ve got it sorted as I focus on a thread

 Examining the strands as they dance inside my head

 But you sit yourself beside me and though it’s not appealing

 I do not wish to hurt, do not wish to harm your feelings

 So I dig my fingers tightly and hope you aren’t aware

 That I now feel rather trapped and your words become a lair

 The sights and sounds that I had tried to block out and ignore

Are now returning tenfold since you do not know the score

 I don’t think I’ll ever tell you, since I know you mean no harm

 It is not your fault I crave for a gentle sea of calm

 But if you ever read this, I hope you will take note

 If you see me staring at the floor, leave me drifting in my boat. 

Housekeeping

27 Sep

Just a little bit of housekeeping news about this blog.

Firstly, as I said awhile ago, this blog is now a team blog authored by many people. Please note when thanking _me_ that there’s a good chance I didn’t author the post you like 🙂

Secondly, You may have noticed the (now removed) large yellow box at the top of each page informing of the change of domain name. I did this as I felt that the site was no longer accurately represented by the domain ‘kevinleitch.co.uk’ – its written by more people than just me now. So, to reflect this, I have changed the domain name to leftbrainrightbrain.co.uk. kevinleitch.co.uk will still get you to this site but you’d be better using the new domain.

Thirdly, I have changed hosts for this site. The decision to do this was not taken lightly. My previous host is a good friend and he runs an excellent service. However, my bandwidth requirements were simply getting too large. This was brought home to me forcibly awhile ago when the site went down for the last day or so of the month as I ran out of bandwidth.

After Jenny McCarthy went on the Oprah show my traffic went through the roof. I was confronted with the distinct possibility of this site going down in the middle of the month. Just as an example, this site usually gets approx 4,000 unique visitors per day. After McCarthy went on the Oprah show, this figure more than doubled and I was pulling in over 8,000 unique visitors per day. The increase was people using Google/Yahoo/MSN etc to search for details about McCarthy and of course, Generation Rescue etc. I rank very well for these phrases (first page).

So, I had to move to a host that had a larger bandwidth allowance, which I have now done. the move was fairly painless I’m glad to say.

I was able to do this due to the generosity of people contributing money to me which allowed me to buy a hosting account with much more space, bandwidth etc. To these people I say a heartfelt ‘thank you’. This blog has been on the web for over 4 years now and I really didn’t want to have to retire it due to the fact it was very popular. Thanks to these people I won’t have to.

However, hosting is not a static purchase. I’ll need to renew the account every year. If you feel so inclined you can donate to keep the site alive by using the PayPal donation button in the top right of the page.

So, my blog is dead. Long live the team blog!

CDC: “Thank you, Sallie, May We Have Another?”

27 Sep

A CDC study released yesterday found no evidence to support “a causal association between early exposure to mercury from thimerosal-containing vaccines and immune globulins and deficits in neuropsychological functioning at the age of 7 to 10 years.” In other words, vaccines don’t scramble your brain.

The study didn’t examine autism as an outcome, although that is almost certainly what it was intended to get at. Instead, it looked for whether children’s exposure to thimerosal before birth or in infancy had any relationship to their later performance on 42 standardized tests which one would expect to be affected by autism. For each of the 1,047 children in the study, the researchers assessed speech and language; verbal memory; achievement (letter and word identification); fine motor coordination; visuospatial ability; attention and executive function; behavior regulation; tics; and general intellectual functioning.

CDC tried so hard. They invited one of the queen mercury moms, Sallie Bernard of “SAFEMINDs,” to participate in the planning of the study. They brought on a panel of outside advisors. The team spent at least two years administering forty-seven separate tests to each of the children and analyzing and writing up the results. They printed every piece of data generated in a companion volume to the published study.

They got kicked in the teeth, but don’t feel bad for them. They should have known better.

The autism-vaccine contingent has responded by spluttering about the study not having been large or random enough, and by accusing the researchers of being biased and of ignoring important associations in the data. It’s no news that these people don’t believe anything that comes from CDC – they’ve said as much, very clearly. But one would think that if you let the antivaxers in on the process from day one, if you were totally transparent, they couldn’t object, could they? They’d have to see the light when the results came back and say, “Well! I guess it’s not the vaccines after all!”

CDC, if you really thought that would happen, you were so, so wrong.

The appearance is that Sallie Bernard was going along with all this up until the day the results came in and – shockingly! – showed thimerosal didn’t do one bit of harm. If she’d thought from the outset, as a SAFEMINDs press release now claims, that there weren’t enough kids in the study or the sampling were biased, does anybody think this gadfly would have nodded and smiled and gone right along with it?

No, everything was fine and dandy as long as she was enjoying being fawned over as a “representative of the autism community” and a fellow-scientist instead of the commercial marketer she actually is. Here’s a clue, Sallie: If you’re going to play scientist, you have to follow the rules of science, and that means you stand by your results. You don’t get to say “heads I win, tails you lose” by waiting to see the outcome before deciding whether the study was any good.

And you really don’t get to have CDC at your beck and call, spend hundreds of thousands of taxpayer dollars to do a study to your specifications, then turn around and call them liars when you don’t like how it comes out.

And you, CDC? You’re not just a victim here. Every time you say “let’s do more research” or “we are examining this issue” in order to appease the mercury moms, you increase the chances that kids will go unvaccinated because you failed to give their parents confidence in the safety of vaccines. When you say a study is reassuring and then highlight what is virtually certain to have been a chance finding (a statistical association between higher thimerosal exposure and transient tics in boys) without making it abundantly clear that some false associations were inevitable given the study design, you defeat the purpose of doing the study. People who understand statistics weren’t the ones who needed to be convinced thimerosal is safe; the antivax crowd will never be convinced no matter what. You needed to speak to the well-meaning parents who worry about the rumors they hear at playgroup, and not only did you give them something new to worry about and whiff the opportunity to show them that the likes of Sallie Bernard are all about the rhetoric – you managed to tee up for yet another round of Righteous Long-Suffering Parents vs. Heartless Government Scientists.

Haven’t you learned yet who wins that one? Or are you going to invite Sallie back for another round of research?

Postscript: More commentary on this study by Arthur Allen, Orac, Joseph, Interverbal, and Kristina Chew.

In 1931…

27 Sep

In 1931 Eli Lilly invented autism.  Or so the story goes.  Again, as the story goes, all autism is mercury poisoning or, more specifically, Thimerosal poisoning.  Thus, Autism didn’t  (and couldn’t) exist before the invention of Thimerosal in 1931.

Dan Olmsted has made a number of bloggish press releases on the “original” autism cases. You know, those kids that Dr. Kanner first reported on. According to that story, somehow all of the first cases (since there weren’t any before then) somehow found their way into Dr. Kanner’s practice.

Wouldn’t it be strange if there were autistic individuals born before 1931? Wouldn’t you expect Mr. Kirby or Mr. Olmsted to let us know if there were evidence of autism that didn’t fit this little model?

In a recent blog post, David Kirby noted that:

“But it turns out that a private citizen has paid the state each quarter to analyze the autism numbers according to year of birth, and not just by age group. State law requires that such privately funded analyses be made available to anyone else who asks for it

So I asked for it. What I got was rather interesting.”

Well, someone else asked for these data sets. Now I have them too.  Joseph has them as well.   And they are rather interesting.

The spreadsheets list the number of clients getting CDDS services by year of birth.  Open the most recent one and there, at the very top, are three of clients born before 1931.  Top of the list, someone born in 1920.   If you look through the past years, you will find as many as five in a single year.  There is evidence for more as some people come and go.

I can already write one of the responses to this post. “Thank you for pointing out that the number is so much less than 1:150 for the older generations”.

While you hope that we all go running after that particular red herring, reread the statement above: “..as people come and go from the system”.  Consider our now 87 year old client mentioned above.  He/she entered the system as autistic in late 1999.

Yessir, at 79 years old this person was added to the CDDS autism roll.   There are a lot of possible reasons.  He/She could have moved into the state, his/her family could have found that they no longer could handle the job alone or, and this is the big question, he/she was already in the system but was only identified as autistic at this late age.

That’s not the only example.  In 1992, a 70 year old was added to the list under autistism.  In 1992 a 64 year old was added, followed by another in early 1993. 

There are more, but you get the point.  These people, people born before the invention of Thimerosal are autistic and are being added to the CDDS lists as autistic late in life.

I do wonder why Mr. Kirby didn’t mention this.  I do wonder why he didn’t shoot a quick email to Mr. Olmsted to point this out.  One has to think that Dan Olmsted would be interested in getting the stories of the pre-Thimerosal, pre-Kanner autistics.  Then again, one has to imagine that Dan Olmsted probably has seen these data for himself already.  Why neither of them has seen fit to mention this or dig deeper into this is an open question.

For once I agree with David Kirby, “What I got was rather interesting”.

Delay Not Halt

26 Sep

A new study from Washington University in St. Louis has confirmed what a lot of us suspected about the developmental nature of autism: that it gets ‘better’ with time. A quick quote:

Like most people, individuals with developmental disabilities such as autism continue to grow and change over time, Shattuck explains: “Their development is not frozen in time and forever the same. That’s just not the case.”

So, contrary to the oft-espoused crapola from the anti-vaccine/autism groups (TACA, Generation rescue, SafeMinds, NAA, Treating Autism) that our kids will be stuck in this non-developing situation forever, actual _science_ – when it looked at the question – found that the direct opposite was true; that autistic people develop as they get older.

You won’t be surprised to hear me say that, for me, this casts extreme and renewed doubt on the claim by the chelation/lupron/HBOT extremists and child-experimentalists that without the miracle cure du jour their poor, poor child would have just rotted away. In fact, next time someone claims to you that without treatment X their child would not have progressed, please point them to this study.

For all major symptoms, the percentage of people who improved was always greater than the percentage who worsened,” Shattuck says. “If there was significant symptom change over time, it was always in the direction of improvement, though there was always a group in the middle that showed no change. The mean never went down.

Lets be absolutely clear about this study though – it does not claim that (as you can see from the above quote) – that every autistic person changes. It would be strange if it did. In all walks of life there will be a group who do not. But it is clear from the presented results that improvement over time is a regular and common feature of autistic development.

What is in a number?

25 Sep

As just about any parent in the US (and probably a lot elsewhere), “what is the prevalence of autism and you will get a nearly instant response, “1 in 150”.  They may know that this is also 6.6 per 1,000.  They will probably know that it was reported as 1 in 166 before that, and so the numbers are climbing.

Ask the same parents, “Where is the prevalence highest?” and you will probably hear, “New Jersey”.  They will probably know that it is 10.6 per 1,000 there, or more that 1 in 100.

Ask the parents, “What group had the lowest prevalence?”  My guess is that few will answer.  Some might recall that Alabama reported 3.3 per 1,000. 

Even that is pretty staggering:  Alabama has less that 1/3 the prevalence of New Jersey? Why aren’t people from New Jersey flocking to Alabama to avoid autism? Why isn’t moving to Alabama high on the Generation Rescue protocol for avoiding autism? Why isn’t anyone asking Congress to study “Autism amongst the Alabamans”?

Take a closer look, though.  Include subgroups.  Include ethnicity.  Who then has the lowest reported prevalence?  Almost no one knows.  Take a look at page 18 of the MMWR report by the CDC on autism. Who has the lowest prevalence?  Hispanics in pretty much everywhere checked.  More to the point, Hispanics in Wisconsin have 0.3 per 1,000 as the reported prevalence.

No, that isn’t a typo.  0.3 per 1,000 lowest compared to 10.6 per 1,000 as the highest:  a factor of 35 different.  It’s a factor of 22 lower than the national average.

Drop the Amish!  (well, since no one has ever bothered to ask their permission, don’t start with the Amish!) Let’s do a study on the Hispanics of Wisconsin!  Demand that your congressman/woman support a bill to study Autism in the Wisconsin Hispanics!

Maybe we will find out they don’t vaccinate!  Maybe we can spend $200,000 on a phone survey!

Maybe the numbers aren’t accurate.

The thing is, it is so obvious that no one commented on this.  For those invested in the epidemic, the reasons are fairly likely the obvious.  You can’t claim an epidemic with innacurate numbers.  You really can’t if we are still in catch-up mode to identify subgroups.

If we do a better job identifying people with autism, the numbers go up. Simple.  It could be hiding an increase in real prevalence.  Heck, it could be hiding a drop, for all we know.  You don’t need enough scientific background to even understand an “r” value to get that.

This isn’t news to the real front line.  Take a look at page 19 of the 2003 report on Autism by the CDDS.  Between 1987 and 2002 the total number of people served under autism by the CDDS increased by 733%.  That supports the epidemic, right?  But, at the same time, the numbers of Hispanics went up by 1,743%! 

How could this happen?  Were Hispanics more susceptible to the vaccines in the 1990’s, causing their numbers to skyrocket?  If so, why is the fraction of Hispanics served in the Regional Centers lower than the White fraction?

You don’t have to speculate, the CDDS tells us:

Increased efforts on the part of regional centers over the past 15 year to reach specific ethnic groups may have contributed in part to the proportional increase in Asians and Hispanics with autism entering the system.

Increased efforts results in higher numbers identified.  Not a tough one to figure out.  Just like increased awareness results in higher numbers identified.

Sorry all you epidemic believers.  If you really believed your own story you would have made a big deal out of the low numbers amongst Hispanics in Wisconsin and called for a study to understand their “resistance” to autism.  But, then you would have to admit that part of the reason the numbers in California went up was better identification amongst minorities. 

The thing is, we need to make a big deal out of these numbers.  It is shameful that we are allowing a large amount of our people to go unidentified.

That’s one big problem with the epidemic party line.  It allows, heck it requires, that we neglect the fact that we are undercounting and underserving people.

That is just plain wrong.

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