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Mainstream Media & Autism

25 Feb

Autistics like Baggs are now leading a nascent civil rights movement. “I remember in ’99,” she says, “seeing a number of gay pride Web sites. I envied how many there were and wished there was something like that for autism. Now there is.” The message: We’re here. We’re weird. Get used to it.

Amanda Baggs

Mottron draws a parallel with homosexuality. Until 1974, psychiatry’s bible, the Diagnostic and Statistical Manual of Mental Disorders, described being gay as a mental illness. Someday, Mottron says, we’ll look back on today’s ideas about autism with the same sense of shame that we now feel when talking about psychology’s pre-1974 views on sexuality. “We want to break the idea that autism should definitely be suppressed,” he says.

Laurent Mottron

….she went on an information-devouring rampage. “There’s such a variety of human behavior. Why is my kind wrong?” she asks.

Michelle Dawson

All this from The New Autism which you can download from the Wired website – or buy in its offline format.

Ya ken that hidden horde, aye?

24 Feb

So – the ‘Hidden Horde’ – the term that anti-vaccinationists like to smirk about as evidence of an autism epidemic. The logic goes like this: if there’s no autism epidemic then where are all the [insert age here] year old autistic adults? I’ve heard people asking for evidence of 75 year old autistics (conveniently forgetting that the average mortality age in the US and UK is around 70), 50 year olds – even 30 year olds.

Never mind that there’s been plenty of evidence for adult autistics. Thats not convenient for the anti-vaccinationist agenda so it gets ignored.

Anyway, todays Sunday Herald carries another story about adult autistics in Scotland called ‘Revealed: ‘invisible’ adults living with autism’.

According to the National Autistic Society (NAS) Scotland report, due to be launched this week, 52% of adults have not had an assessment of their needs since the age of 18…..It is estimated that more than 35,000 adults in Scotland have the condition, but campaigners said they were “invisible” to local authorities, who are failing to record the number of people with autism in their area.

The population of Scotland is 5,062,011. The latest prevalence estimates for the UK are 1 in 100. This means that 50,620 people are autistic. If 35,000 adults in Scotland are autistic then 69% of autistic people in Scotland are adults.

Hidden horde aye?

New mercury/autism paper to misrepresent

22 Feb

A new study on autism and mercury has been published:

Autism is a highly heritable disorder, however, there is mounting evidence to suggest that toxicant-induced oxidative stress may play a role. The focus of this article will be to review our animal model of autism and discuss our evidence that oxidative stress may be a common underlying mechanism of neurodevelopmental damage. We have shown that mice exposed to either methylmercury (MeHg) or valproic acid (VPA) in early postnatal life display aberrant social, cognitive and motor behavior.

Some people have reported on this study thusly:

New Study Implicates Mercury In The Development Of Autism

Um, right.

These same people, well known for their anti-vaccine beliefs, fail to note anywhere that this study says:

…., it is important to note that autism was not found to be associated with either pre- or neonatal exposure to organic mercury.

One form of organic mercury being, of course, thiomersal.

Might it be very uncharitable of me to suggest that this was a deliberate obfuscation? I guess it might but I still think it was. Especially when this same person says:

….will they all continue to proffer the lie that there is no convincing evidence linking vaccines to autism, while ignoring all the studies that are piling up on the hard drives of parents across the country?

Hmmm, so this study quite categorically states there is no link between organic mercury and autism and yet this person calls others liars? Projection is a terrible thing.

There will be more to say on the quality of this study – especially its references – but I wanted to get this clear as soon as possible.

Autistic Voices Not Saying What We Want

21 Feb

Yesterday I linked to a story about Carly Fleischmann, a 13 year old autistic girl who, up until recently has been uncommunicative.

All of a sudden these words started to pour out of her, and it was an exciting moment because we didn’t realize she had all these words,” said speech pathologist Barbara Nash. “It was one of those moments in my career that I’ll never forget.”

I’ve caught some email flak from a few people in the neurodiversity community for linking to this story. Mainly because of the closing words from Fleischmann:

If I could tell people one thing about autism it would be that I don’t want to be this way….”

I can understand how people would be upset with Fleischmann’s opinion. Many autistic people have spent a long time trying to raise awareness of their lives as something that they are happy to have and happy to be autistic in. I consider it vital that autistic people know that too.

But.

These _are_ Fleischmann’s thoughts and opinions. We should not and cannot discount, ignore or attack them. We cannot pretend that they are not equally as valid as any other autistic persons just because we don’t like their message. To say that they are not valid is to take the exact same stance as those who claim autistic people cannot know their own minds. Fleischmann knows her own mind and – right now – she doesn’t like being autistic and wishes she wasn’t.

Maybe with age will come a new self-acceptance. Most teens are full of self doubt and lack positive self imagery and I doubt Fleischmann is much different than most teens. But we also have to consider that she _won’t_ change her mind and that she will join with other autistic self advocates who may wish for a cure. We have to ask ourselves difficult questions about the nature of our advocacy now. I will be quite open and say that if my daughter ever wishes for a cure then I will try and help her get it. I will disagree with her decision and feel sad that she has made that choice – *but it is her choice* . Just as it is Fleischmann’s choice to not be happy with the fact she is autistic.

This is also why I am ambivalent about a cure. Whilst I do not think that a cure is a necessary thing for autistic people, I do believe that an individual has the right to do with their own bodies pretty much whatever they want. We have a society where men can become women and vice versa and no one aside from prigs and bigots object to this. This strikes me as the same. the issue with cure for me is that it must be very, very responsibly initiated. The issue of whether there will ever _be_ a cure is out of all of our hands. If a scientist wants to research a cure then they will.

We should – in my opinion – try and teach that there is nothing wrong with being autistic. Not that one cannot have a choice to not be autistic.

Rally at the AAP

21 Feb

From the Age of Autism:

They need to start listening to parents’ concerns and take them seriously,” said Amy Carson from Moms Against Mercury. She and cofounder Angela Medlin came all the way from balmy North Carolina to freeze in front of the AAP, abetted by TACA and NAA Chicago, led by Chapter Development Director Karen McDonough. This was their fifth rally outside the AAP, timed to greet employees arriving at work and remind them that thousands of American families believe vaccines have triggered an epidemic of autism and other developmental and chronic health disorders.

And here is the proof positive of the teeming throngs of ‘thousands of American families’.

rally_people.jpg

You can click the image to make it bigger. Sadly it doesn’t increase the amount of attendee’s.

Wakefield, Baird, Archives

20 Feb

This is a Guest Blogged post, written by an author with a keen interest in Wakefield related issues. My gratitude to Nigel for writing the post which follows.

Wakefield and his colleagues were fast off the mark (http://www.thoughtfulhouse.org/pr/020608.htm) to criticise the study by Baird et al which recently appeared in Archives of Disease in Childhood. This was a well conducted study which failed to detect measles virus (MV) or elevated measles antibodies in the blood of autistic children. There is a general feeling that even if the almighty Jehovah himself, collaborating with the top researchers at the Universities of Oxford, Cambridge, Harvard and Yale, and with an advisory board of all recent Nobel laureates in medicine, produced a negative study on measles virus in autistic children, Wakefield would still find flaws in the work; remarkably rich from the single largest purveyor of junk science in the last 20 years.

As a criticism of the study Wakefield states “It is a major error to have presumed that peripheral blood mononuclear cells are a valid ‘proxy’ for gut mucosal lymphoid tissues when searching for persistent viral genetic material” and later states “ We are increasingly persuaded that measuring things in blood many years down the line tells us very little about the initiating events in what is, in effect, a static (non-progressive) encephalopathy unlike, for example, subacute sclerosing panencephalitis, which is a progressive measles encephalopathy” .

The hypocrisy of this statement is quite breathtaking, but unsurprising from someone whose relationship with scientific honesty and integrity is somewhat elastic. For those who don’t have long memories, the first “alleged “ evidence of MV in autism came from Wakefiled’s collaboration with Kawashima where using standard methodologies which were highly effective at detecting MV laboratory contaminants, Wakefield claimed that blood cells from 3/9 autistic children gave positive results ( Dig Dis Sci 2000 45:723-9). This paper formed a key part of the UK MMR litigation from 2000-2003 driven by Wakefield himself until it was mysteriously dropped from the final claimants witness reports by Wakefield himself. Perhaps the realization that blood is a poor proxy for gut came to him in 2003, or more likely, that he knew the Kawashima data were junk and would not stand up in court.

Even more staggeringly, the vast majority of samples from autistic tested for MV by O’Leary in the Unigenetics lab in Dublin were from blood; including the now infamous blood samples taken from healthy children at Wakefield’s own child’s birthday party. Steve Bustin in his testimony on the US Cedillo case comprehensively shredded all of the work that came out of that lab. All of this data on blood has never appeared in the public domain although the junk science on MV in the gut did appear in the Uhlmann paper, in a low impact factor journal which promptly rolled over and died.

As always however, you cannot believe anything Wakefield says as being scientifically valid. In the blood there are cells which are representative of the gut lymphoid tissue. This is very well established and non-controversial. When T and B cells are activated in the gut associated lymphoid tissue, they acquire the alpha4beta 7 integrin and migrate via the mesenteric lymph nodes, and the thoracic duct into the circulating blood and then home back into the rest of the gut using the mucosal addressin, MAdCAM-1.. This happens in all healthy people constantly and it is possible to identify these gut-homing cells in blood. Since Wakefield claims that MV persists in the allegedly large lymph nodes in the gut wall, cells should be infected with MV at source and carry the virus with them into the blood. So come on Andy, with O’Leary’s supersensitive PCR, you should be able to detect at least some of these cells migrating to the gut via the blood. After all, the PCR is so sensitive it can detect MV in samples of distilled water, now that is really amazing!

I suppose one should always rejoice in the repentance of a sinner, and if Wakefield has now come to the conclusion that blood is not a proxy for gut lymphoid tissue, we should be happy he is now happy to recant on all his previous claims about blood cells being positive for MV in autism. I have a sneaky feeling however that this is just another “wriggle” to keep the show on the road. If one of his acolytes claims to find MV in blood of autistic children, you can bet that blood will once again become a valid proxy for gut lymphoid tissue.

New Stuff

19 Feb

Couple of bits and bobs – two new pages on the site, both at the top. ‘Stuff’ takes you to some downloadable goodies for your browser and/or blog. ‘Timeline’ takes you to a timeline (oddly) of events surrounding the vaccine/autism hypothesis.

Enjoy.

In other news, the AAP Day went well yesterday. Along with the 60+ emails I got to send on to Dr Minshew last week, over a dozen blogs, as well as mine, posted about the AAP thing:

Marla Baltes
One Dads Opinion
Telstra
RunMan
Mom Not Otherwise Specified
Whiterer on Autism
Club166
Autism News Beat
Respectful Insolence
AutismVox
Maternal Instincts
Good Math, Bad Math
Grey Matter/White Matter
Aspie family
Terra Sigillata
Andrea’s Buzzing About
Mike the Mad Biologist
I Speak of Dreams

Its good to see the autism, autistic and science blogging communities getting together on this issue.

Email From JB Handley

19 Feb

From: J.B. Handley”
to: kevleitch@gmail.com
date: 19 Feb 2008 03:40
subject: Fair warning

Kevin:

As of this morning, I have retained counsel with offices in London and Birmingham to monitor your blog closely.

I have run a highly ethical business for 12 years. I have been scrutinized by the most sophisticated investors in the world and now manage more than $1 billion of their capital. My business dealings have met the highest ethical standards at every turn.

I will defend any attempt by you to sully my reputation in the business world with whatever resources are necessary to do so.

I do not think this is a great use of your time. But, if you decide it is, so be it. As you know by now, I never back down from a fight.

I have no interest in ever writing about you in the public realm nor having any sort of interaction with you whatsoever. However, if you choose to provoke me, as you recently did, I will respond.

I would be more than happy to move on and never interact with you again. It’s up to you to decide how you would like our future interaction to look. As I have said many times, my gripe is not with you and I have no interest in fighting with other parents of autistic children, we all have enough on our plates.

J.B. Handley
Managing Director
Swander Pace Capital

What follows is part of my response.

I have absolutely no interest in your business dealings whatsoever. You can do whatever the hell you like. I hope your company goes from
strength to strength – or fails miserably – I don’t give a rats ass either way.

However, what I *am* interested in is your role in companies you sit on the board of who seem to have business interests very much at cross
purposes with what you advocate regarding the nature and cause of autism.

So if you think I’m going to be attacking the way SPC does business you can rest assured I couldn’t possibly care less. In fact if you think I’m going to be attacking SPC at all (or any subsidiary or related company) you can rest assured I won’t be.

What I might very well discuss however is your personal ethics in relation to the companies you sit on the board of and its my opinion that its *this* that is really worrying you. And worrying you to the point where you are attempting to strong arm me into not talking about it.

So – for now – any discussion regarding JB Handley, any links to joke websites is off-limits. I don’t have the money or resources of JB Handley.

I’ve disabled comments for this post but if you’re a blog owner discussing this, please let me know via email.

UK Libel Overview.
US Libel Overview.

AAP needs help of rational parents

18 Feb

As part of the welcome addressing of the needs and concerns of the real autism and autistic community in regards to science and as part of their efforts to address the pseudo-science and quackery of the anti-vaccine agenda of certain autism related groups, the AAP are looking for rational parents to help them. I will certainly be offering my details should they be of service and I would urge any parent of an autistic child who is sick of hearing the unscientific and self serving agenda of such groups – groups who not only belittle autistic people but also gladly and readily place the health and well being of others at risk for absolutely no purpose to contact the AAP to offer their details also.

If you wish me to pass on your details, please either leave your name and email address in the comment section of this post, or email them to me or you can email the author of the AAP letter reproduced below.

Hello,

As part of our ongoing response to media stories regarding autism and vaccines, the AAP communications department is compiling a list of parents who support the AAP and are available for interviews. We are looking for two types of parents who could serve as spokespersons:

Parents of children with autism spectrum disorders who support immunization and who do not believe there is any link between their child’s vaccines and his or her autism.

Parents of children who suffered a vaccine-preventable illness. This could be a parent who declined immunization, whose child became ill before a vaccine was available, or whose child was ineligible for immunization.

We are asking for your help identifying parents who would be good spokespersons. They do not need to be expert public speakers. They just need to be open with their story and interested in speaking out on the issue. We will contact candidates in advance to conduct pre-interviews, to offer guidance on talking to reporters and to obtain a signed waiver giving us permission to release their name.

If a parent were placed on our list, we would offer their name and contact information to select media. We hope to build a list of parents from a wide range of geographical areas.

As the Jenny McCarthy and “Eli Stone” stories illustrate, this issue is likely to recur in the national and local media. The AAP is committed to doing all we can to counter such erroneous reports with factual information supported by scientific evidence and AAP recommendations.

The anti-vaccine groups often have emotional family stories on their side. The ability to offer a reporter an interview with a similarly compelling parent who is sympathetic to the AAP’s goals is a powerful tool for our media relations program.

Please contact me if you have any questions or to suggest a parent to interview.

Thank you,

Susan Stevens Martin
Director, Division of Media Relations
American Academy of Pediatrics

Lets take the example of just one worldwide disease that is vaccine preventable. Measles. In Jan 2007 The Guardian reported:

Between 1999 and 2005, there was a 60% reduction in annual measles deaths worldwide, from 873,000 to 345,000….

Fantastic news. But let that figure of 345,000 stay in your mind. That was how many people died all over the world from measles in 2005.

What do the countries most affected by measles think?

Urbain Olanguena Awono, Cameroon’s public health minister, described the fall in deaths as a spectacular achievement. “We are winning the fight against measles, which has long killed, sickened and disabled our children,” he said. “Our determination is stronger than ever to make measles history by further strengthening our measles control activities, working in concert with our international partners and setting aside resources.”

And who form part of their international partners I wonder? Merck? Wyeth? Bayer? SafeMinds? TACA?

There is even cautious talk of the possibility of ridding the world of measles, but while the eradication of smallpox was a triumph, the long struggle to eliminate the final reservoirs of polio in a handful of countries has shown how difficult it is to stamp out a disease.

And it is the same with measles – a handful of countries are holding back the eradication of measles.

Measles eradication could conceivably be stymied not by the developing world, but by dissenters in rich countries such as the UK

Thats right. My rich, upper middle class fellow countrymen and women. And their American rich upper middle class counterparts. Some of whom think the idea of AAP appealing for help to save kids lives is funny to the point of making jokes about the deaths of children:

From: krstagliano
Date: Feb 16, 2008 6:57 AM
Subject: [EOHarm] Re: JB, email from AAP looking for sick kids
To: EOHarm@yahoogroups.com

Can you imagine the ad campaign? Dad sitting in a confessional proclaiming his remorse and grief for not vaccinating his child, while the bell tolls in the background. Then a quick shot over to a small pink casket with a dolly on top and mother on her knees sobbing in front of the altar……[]

KS

Hilarious eh? Those whacky guys and gals at EoH really know how to make with the funnies.

Please don’t let this morally and scientifically bankrupt bunch of me-me’s keep hogging the media with their poor science. Support the AAP in the US and the NHS in the UK.

Autistic Guinea Pigs

15 Feb

During WWII a number of German doctors conducted painful and often deadly experiments on thousands of concentration and death camp prisoners without their consent.

……..

The second category of experimentation was aimed at developing and testing pharmaceuticals and treatment methods….

josefmengele.jpg

Source

Its always a dangerous thing to invoke the spectre of the Nazi’s. There is a profound risk of undermining or belittling the full horror of what happened in Europe during the second world war. I hope I don’t do that.

However, there are times that I simply know of no other way to illustrate the sort of things that one is sent from the various extreme biomed groups that exist on Yahoo and elsewhere. Who can forget Christine Heeren’s poor son being chelated with garlic and vinegar? Or the young mother being urged to chelate her 9 month old baby because she reported he was ‘smiling inappropriately’? And of course, there’s the death of Tariq Nadama.

All these things are simply experimentation on children, pure and simple. In goal and in safety they are no different that any of Mengle’s.

Does this mean parents are too blame? I don’t know. Is Heeren ‘to blame’ for what is being done to her son? No, I don’t believe so. The practitioner performing the treatment is. He (or she) is the one milking parents who believe they are desperate. They are the ones pawing over the traits of children for clues to a big payday.

So no I don’t think parents are to blame. However – what they are is _responsible_ . At some point one cannot keep saying ‘I didn’t know’. At some point it must filter through that injecting a mix of garlic and vinegar into a child isn’t going to do a damn thing. At that point, the parent becomes complicitly responsible. This is why I have such a hard time with the Nadama’s suing. I cannot believe that they didn’t know what they were doing was quackery. It was not a case like the one I touched on yesterday where parents were misled into a dangerous and nearly fatal procedure simply to further the beliefs of a quack.

There is a Yahoo Group – a very busy one – called MB12 Valtrex which discusses these treatment options for autism. Recently a mother to a two and half year old posted, listing what he was on and what he was like:

GFCF – CF since September ’07
Diflucan
Singulair
Glutathione Cream daily
B12 injections every five days, now going to every 3
Cod Liver Oil
Vitamin A
MultiFlora Spectrum Probiotics
Enzyme Complete DP-IV
Super Nu Thera
Vitamin C – 500 mg per day

I just look at him and he seems SO MUCH worse since we started this. I understand the yeast may be acting up and causing crazy behavior but he is unhappy, unhealthy looking. He has dark circles under his very tired eyes. His stimming and behaviors are just worse than ever. My husband and I keep looking at each other and wondering why it’s getting worse when we’re suppose to be on the right track now.

The past few days he’s had white chunks in his stool. Loser than normal stools, very light in color, almost like mustard with dark specs. DAN doc says yeast does NOT come out in poop … then what is it?

That’s a daily list of meds by the way.

Its unutterably depressing to read this sort of thing and know that this poor kid is being experimented on by the DAN! doc and this poor mother (new to the whole extreme biomed community) simply doesn’t have enough knowledge or energy to stand up to this quack.

The community elders of course – those who have become complicit over the years, those who should know better – encourage her to push on:

I know it’s hard to watch your child get worse when you’re trying so hard. Just keep looking and you’ll find the answers. It took me several months to realize that I needed to keep looking for answers. And please, talk to your own doctor about the trouble you’re having. I know how you feel, I’ve been there (and still am some days).

Just keep looking. Right. This from a person who admits she’s still pretty much where the original poster is.

An amazing veteran Mom told me once that when her kids react poorly, it just keeps her going because she knows she’s hitting something and, although it may not be the right supplement at the right time, she’ll eventually get it right.

She’ll eventually get it right. Yeah. And at what cost?

Does it strike no one else as odd that there _are_ all these ‘veteran moms’ _at all_ if this extreme biomed is supposed to work? Why are they still around and doing treatments and pushing experimentation? Surely their kids are ‘recovered’? Or maybe they’re like Erik Nanstiel’s daughter – still ‘low functioning’ after 6 years of extreme biomed and all this extremeism is there simply to assuage mum and dads self inflicted guilt – guilt carefully nurtured by the quacks lining their pockets at these parents expense and their kids childhoods.

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