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Salon – Inside the vaccine scare

22 Sep

Salon redeems itself from producing what Orac at the time called biggest, steamingest, drippiest turd ever dropped on the web.

Three years ago Salon published the notoriously innacurate ramblings of RFK Jr. After uproar in the web science community and numerous fixes and amends to the original piece, what was left was still an awful piece of credulous rubbish.

It seems that Salon learnt their lesson. This time, they have ensured that the person talking about vaccines and autism is a _scientist_ as oppose to a crowd-pleasing politician.

Rahul Parikh has published a review of Paul Offit’s Autism’s False Prophets which differs so wildly from the RFK Jr debacle that its almost impossible to think of them being in the same publication.

I don’t want to do a review of a review as that would be bizarre and unnecessary but Parikh makes some key points that I want to address. The first one is the way the book starts.

Early in Dr. Paul A. Offit’s new book, “Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure,” he describes a threatening letter he received from a man in Seattle. “I will hang you by you neck until you are dead!” it read. The FBI deemed the threat credible, assigning Offit a protective officer who, for the next few months, followed him “to and from lunch, a gun hanging at his side.” He then recalls a suspicious phone call from a man who recited the names of Offit’s two children and where they went to school: “His implication was clear. He knew where my children went to school. The he hung up.” These days, the hospital he works in regularly screens his mail for suspicious packages.

Such stories usually come from pro-choice physicians on the front lines of the abortion debate. But Offit is no obstetrician. Rather, he is a baby doctor — the chief of pediatric infectious diseases at the Children’s Hospital of Philadelphia. The threats against him and his family have come not from antiabortion advocates, but rather from anti-vaccine crusaders who believe that vaccines cause autism. Offit, it turns out, has been targeted by them because he helped to develop a vaccine that prevents rotavirus, a serious gastrointestinal infection in children, and because he has been staunchly pro-vaccine in a time when there are many doubts about their safety.

It is amazing that we should be in a situation where a doctor who is actively saving lives is being targeted for that very fact. What is even more amazing is the fact that the very antivaxers who hate Offit so much simply don’t believe he _is_ being targeted. A few comments from Lisa Jo Rudy’s piece on Offit’s book illustrate this perfectly:

It’s very hard to judge the seriousness claims like Offit’s….

Mark Blaxill, Safe Minds.

I have heard Dr. Offitt make his claims of threats, etc. on more than one occasion. But I have never seen any real evidence of those alleged threats.

Wade Rankin, autism/antivax blogger

I would suggest that a reference to the possibility that some agency or company would harm one’s children in the future could be construed and repeated as a “threat” to one’s children if that threat would help to garner sympathy and label an opposing side as nuts.

Mike B

An amazing reaction. They genuinely hate Paul Offit so much that they think he is making up threats made to his children. And they think he’s doing it to ‘garner sympathy and label an opposing side as nuts’. This is the type of denial and refusal to see their own shortcomings that has led to the sorry state of autism/vaccine science in the first place.

Parikh also documents the reality of the science today and the reality of how the wider world views the autism/anti-vaccine community.

Despite what Wakefield claimed in his paper, his hospital’s ethics committee never approved his experiments to put children to sleep under general anesthesia, do spinal taps on them, take biopsies of their intestines (one of the children was hospitalized after his colon perforated in several places) and take volumes of blood from their veins. Deer also discovered serious conflicts of interest: Wakefield’s research was secretly bankrolled by a personal injury lawyer whose clients were suing MMR makers. Wakefield himself was given close to a million dollars to prove that the MMR caused autism. He had filed a patent for a new MMR vaccine at the same time he was doing his research. Upon learning this, Lancet retracted his paper, and he was charged with professional misconduct in 2005. If he is found guilty of misconduct, he will never practice medicine in the U.K. again.

The people in the autism/anti-vaccine community see Wakefield as a persecuted hero. Everyone else in the entire world who takes an interest in the matter sees him as a weak man who tried to game people – and did. Possibly he still is.

This level of disconnect between what those in the autism/antivax community see as the reality and the _actual_ reality is sometimes shocking. Even for me who has been in the front line of this debate for five years now, some of the things I read about and see from these people make my jaw drop.

I blogged about an example of this not long ago when Safe Minds Board Member Heidi Roger stated that Polio could be preferable to autism – and even that death could be better than autism.

This is a sadly far from uncommon opinion amongst a certain type of autism/antivax believer. To sum up their personality type would, I think, bring a sizeable minority of them very close to Munchausen syndrome by proxy/ Fabricated or induced illness , the indications of which seem very familiar to me from reading the Yahoo groups over the last few years:

* A child who has one or more medical problems that do not respond to treatment or that follow an unusual course that is persistent, puzzling and unexplained.
* Physical or laboratory findings that are highly unusual, discrepant with history, or physically or clinically impossible.
* A parent who appears to be medically knowledgeable and/or fascinated with medical details and hospital gossip, appears to enjoy the hospital environment, and expresses interest in the details of other patients’ problems.
* A highly attentive parent who is reluctant to leave their child’s side and who themselves seem to require constant attention.
* A parent who appears to be unusually calm in the face of serious difficulties in their child’s medical course while being highly supportive and encouraging of the physician, or one who is angry, devalues staff, and demands further intervention, more procedures, second opinions, and transfers to other, more sophisticated, facilities.
* The suspected parent may work in the health care field themselves or profess interest in a health-related job.
* The signs and symptoms of a child’s illness do not occur in the parent’s absence (hospitalization and careful monitoring may be necessary to establish this causal relationship).
* A family history of similar or unexplained illness or death in a sibling.
* A parent with symptoms similar to their child’s own medical problems or an illness history that itself is puzzling and unusual.
* A suspected emotionally distant relationship between parents; the spouse often fails to visit the patient and has little contact with physicians even when the child is hospitalized with serious illness.
* A parent who reports dramatic, negative events, such as house fires, burglaries, or car accidents, that affect them and their family while their child is undergoing treatment.
* A parent who seems to have an insatiable need for adulation or who makes self-serving efforts for public acknowledgment of their abilities.

I might catch some flak for making this comparison but whilst I am not suggesting that everyone autism/antivax adherent is MSbP or FII, I do think – as I say – a sizeable minority are. In the list above I have emboldened the characteristics I personally have seen lots of evidence of.

At any rate, whether there is genuine evidence of MSbP or FII or not, there is definitely an ongoing unreality to a certain group of peoples lives with autism. Why? To pretend to themselves they have total control over something that they do not understand? To medicalise something in order to keep alive the hope of a medical cure? To fuel their pre-existing lust for conspiracy theories? All of the above? None? Something else?

It gets to a point when it starts to not matter. When autistic children are literally being experimented on with absolutely no control in place like they are being with chelation, like they are being with Lupron and like they now are being with OSR we have to do something. When children in the UK are dying of vaccine preventable disease and children in the US are being hospitalised then we need to do something.

Paul Offit did something.

Write the IACC today!

19 Sep

The IACC (Interagency Autism Coordinating Committee) is seeking input. They have two RFI’s (requests for input) out right now, and one has a deadline of today!

The one with the deadline today is for the services subcommittee. The RFI is on the NIH website.

abfh has noted this deadline. ASAN (the Autistic Self Advocacy Network) has an alert on this, including talking points. This was also discussed recently on this blog.

Talking Points

The Autistic Self Advocacy Network has developed these talking points
to assist individuals in writing statements to IACC on the topic of
supports and services.

The RFI lists a number of areas of concern that can be addressed. You
do not have to address every topic. You can pick the ones that are
the most important to you. Feel free to change the wording so that it
reflects your most important priorities.

Education:

Studies need to be undertaken that assess current levels of supports
and services within the public education system. When treatments and
interventions that look promising are developed, additional funding
must be appropriated to address implementation so that teachers,
students, parents, and other education professionals are up-to-date
and have access to information, training, technological resources
such as AAC, and other resources.

Health and medical services (including dental):

Access to health and medical services, particularly for adults on the
autism spectrum, is of paramount importance for research funding.
Current studies that focus on diagnosis and treatment of children do
not address the very real need for healthcare access for autistic
adults who may not have insurance, may have communication
difficulties and other difficulties that prevent them from obtaining
adequate care. Education of health care professionals so that they
can interact knowledgeable with autistic patients/clients is one area
for research into services and supports.

Housing:

Research into housing alternatives, following ideas such as those in
the Community Choice Act and Money Follows the Person projects,
should be undertaken. Warehousing of individuals in residential
centers is undesirable yet often occurs because infrastructure for
other types of housing is unavailable or underutilized. Research
needs to include cost-effectiveness measures, some of which are
already available, which show that housing in the community costs
less than residential living.

Transitions:

Research into the most effective transition options needs to be
undertaken. Parents and young adults on the spectrum often have
nowhere to turn after they age out of the school environment. A
clearinghouse of options should be researched and developed so that
families will have resources already in place.

Employment:

Research into employment options and opportunities for people on the
autism spectrum needs to include components such as accommodations,
training, and career counseling. Research in other areas such as
treatment, interventions, diagnosis, and genetic research, can be
used to counter stereotypes of what an individual on the spectrum can
do for employment. Resources for trainers, counselors, employers, and
others need to be developed so that autistic people are not
discriminated against in the employment world because of stereotypes
and misunderstanding. The IACC and NIMH can set the tone for accurate
information that can help employers assess individual strengths and
weaknesses rather than relying on discriminatory assumptions.

Community inclusion:

Full inclusion in the community needs to be examined and research
initiatives should focus on this very important aspect of adult life,
and life for children who will grow into adulthood. Community-based
participatory research should be implemented that will accurately
reflect the actual needs of the autistic teen and adult population.

Safety:

Research into areas that can improve safety for autistic people,
throughout the lifespan, and in different situations, needs to be
undertaken. Areas to focus on are keeping people on the autism
spectrum safe if they have a tendency to wander, or do not understand
dangerous situations. Education of parents, professionals, first
responders, and autistic people should be undertaken, and the best
methods for ensuring safety should be addressed by research in this
area. Sometimes autistic people can appear unusual in behavior, which
will attract attention from law enforcement and other personnel.
Training for professionals in aspects of autistic behavior that might
not be understood is a crucial area to address in order to promote
the safety of all.

Older adults:

Many older adults remain undiagnosed. Some have no health insurance.
Some are living in poverty or are homeless. Many older autistic
adults will need medication, including medication for health
problems. Research into how to best reach out to older adults who may
not have an autism diagnosis but may present as in need of services
should be undertaken. Research into the effect of common medications,
including for non-autistic-related health problems such as diabetes,
should be undertaken. Because of the possibility of extrapyramidal or
paradoxical drug reactions, and the general effect of certain drugs
on older people, cases should be documented so that any adverse
pattern of reaction can be established. Housing, health care, dental
care, and community inclusion should all be addressed and tailored to
the older autistic population. Community-based participatory research
can be invaluable in determining the best ways to access health and
other care.

Finances:

Across the lifespan, autistic children and their families, autistic
adults and elders will have various financial needs. Research into
how to help families and individuals on the spectrum cover the costs
associated with treatments and interventions, and a clearinghouse for
resources should be developed. In addition, financial resources for
autistic adults who have difficulty with financial concepts should be
researched and implemented.

Guardianship:

Research into the best ways to establish guardianship should be
undertaken, including autistic adults as full participants in the
research process in order to establish the most ethical procedures
for guardianship. Guardianship should be tailored to the needs of the
individual rather than being a one-size-fits-all category, since some
individuals will need guardianship in limited areas, but not all
aspects of their lives.

Estate planning:

Families with autistic individuals need to take extra precautions in
planning an estate, especially for individuals who may need ongoing
care throughout life. Autistic adults also may need assistance with
estate planning. Research leading to the development of estate
planning tools that can assist families and autistic individuals in
making sound decisions should be initiated.

Take a look at the talking points above. Take a look at the RFI. Then, send an email to the services subcommittee.

Age of Autism on chelation cancellation

18 Sep

I posted yesterday on the cancellation of the NIH study that was going to be examining chelation’s efficacy as an autism treatment.

What I said was that it was a good idea and it is. The simple facts are that autistic children are not toxic. The only labs that consistently find autistic children to be toxic are the labs Dr Jeffrey Brent identified as ‘these ‘doctor’s data’ type of laboratories’. In fact, its probably worth repeating his testimony about these labs:

Q: Dr Mumper discussed today some key aspects of chelation therapy….as a medical toxicologist do you see any reason for the chelation to remove mercury from either Jordan King or William Mead in these cases?

A: Absolutely not….there is no test in medicine that is more valid for for assessing mercury toxicity than an unprovoked urine mercury concentration. [For Jordan King and William Mead]…their unprovoked urine concentration is exactly in the normal range.

On the other hand, they have been chelated. And the justification for that chelation with regard to mercury comes from what you see in the right hand column where in both cases, 4 out of 5 provoked examples have been…uh…increase urine mercury. Well, you’re supposed to have increased urine mercury with provoked examples! Therefore there is absolutely no indication based here or anywhere else I saw in the medical records that suggest that there is any mercury effect in these children and therefore that was absolutely no reason to chelate them for any mercury related reason.

The standard way of chelating autistic kids is to do a provoked challenge test. As Dr Brent says – you’re supposed to have increased levels with provoked examples.

Q: There’s nothing here that would be out of the ordinary – from your experience – absent, even in the absence of a standard reference range.

A: Well, in truth we don’t (?) urine/leads because the ‘gold test’ is blood/lead so I haven’t looked at many urine/leads in children that I have chelated. So I can’t speak to that in my experience. But I have seen a number of patients now come to me because of these ‘doctor’s data’ type of laboratories which are based on urines – chelated urines – and they always have high leads in their chelated urines and I tell them ‘well, lets just do the gold standard test, lets get a blood/lead level and so far, 100% of the time they’ve been normal.

To sum up, the labs that consistently find a need to chelate autistic kids use the wrong sort of tests. When expert Toxicologists such as Brent do the proper ‘gold standard’ testing, the results are normal 100% of the time.

Its as simple as pie. You use the wrong test, you’re going to get the wrong results.

And yet, over on the Age of Autism website, they’re getting very angry about this cancellation. The angry opening paragraph to a recent post highlights the lack of logic in their stance:

So who canned the NIMH chelation study as “too dangerous?” Children are given huge doses of chemotherapy and radiation in a desperate effort to save them from cancer – fully knowing the side effects themselves can be deadly. It’s a fair risk most parents are willing to take to help a sick child.

Chemo is a standard treatment for cancer. It is medically indicated. Chelation is not a standard treatment for autism. It is not medically indicated. The reason it is not medically indicated is because there is no evidence metals are linked with autism.

There is a chain of logic that must be followed. If you want a type of treatment to be assessed for its efficacy, then your first step is surely to establish that there is a medical necessity for that treatment. If there isn’t then what you are doing is inflicting a completely unnecessary procedure on a child. In this case, a procedure that has been known to cause lasting brain injury in animals (rats).

The comments on AoA go from the bizarre:

So, why do I sense Pauly PrOffit’s grubby, greedy little fingers on this? This smells like something that he would do

To the paranoid:

THIS HAS BULLSH*T WRITTEN ALL OVER IT!!!

To the conspiracy-esque:

Notice the studies they WON’T do:
Studies on the effects of chelation.
Studies comparing unvaxed and vaxed children for autism.
Studies to find the misdiagnosed adults with autism to prove there’s been no increase.

When is everyone going to wake up to what’s happening?

NB – a study to find adults in Scotland is being planned if I recall correctly.

No-one considers the most likely reason for this cancellation:

a) There is no evidence metals cause autism
b) There is evidence chelation can cause injury
c) There is therefore what any rational person would see as an unacceptable amount of risk to children.

And of course we have the usual ‘my child recovered’ stories. Why do these stories never seem to get written up as case studies I wonder? We’re told there are thousands of them – where? Where in the medical literature are they? Apparently there are lots of rogue paediatricians who believe the antivaxxers so why aren’t they doing case studies on the multitudes of autistic children who are now totally recovered?

Personally I think that is what has bullshit written all over it.

Chelation study 'called off'

17 Sep

CHICAGO – A government agency has dropped plans to test a controversial treatment for autism that critics had called an unethical experiment on children.

The National Institute of Mental Health said in a statement Wednesday that the study of chelation (kee-LAY’-shun) has been discontinued. The statement says the agency decided the money would be better used testing other potential therapies for autism and related disorders.

The study had been on hold because of safety concerns . A study published last year linked a chemical used in the treatment to lasting brain problems in rats.

The treatment removes heavy metals from the body and is based on the fringe theory that mercury in vaccines triggers autism — a theory never proved and rejected by mainstream science.

Yahoo News

Back in June, I blogged about the possibility of the delayed chelation study being released. It had been delayed due to the same ethical concerns that now seem to have scuppered it. I can only view this development with relief. As I said at the time:

Lets be clear. This study is being touted about for one reason and one reason only – to appease the anti-vaccine/autism groups. In the mainstream medical/scientific community (and notably in the toxicology community) it is well known that autistic kids aren’t toxic.

Click on the link above to see some quoted testimony from Dr Jeffery Brent, world renowned Toxicologist. His opinion on the need for chelation of autisitic children is thoroughly discussed. Basically, when you do the provoked, non-standard tests from labs that make a good living from charging for these tests, they come back positive. When experts like Dr Brent do the gold standard tests, 100% of the time they come back normal.

There is no reason to chelate autistic children.

ASAN on the IACC

15 Sep

Ari has put together a ‘call to arms’ everyone should read:

Below is a document of considerable importance. Right now, the Inter-Agency Autism Coordinating Committee is seeking public comment on issues relating to service-delivery. In our conversations with NIMH, we’ve heard a considerable willingness to move closer towards our position, if supported by a sufficiently strong public comment. The deadline on this is this coming Friday, the 19th. If people would be willing to post this on their blogs and also post their personal e-mails to NIMH on their blogs, we’d appreciate the help in turning people out to this. The initial version of this that has gone out on listservs and so on did not include the contact info to send the public comments to – an error on our part – but we’ve added it here. People should direct their comments, stories and so on to iaccservices@mail.nih.gov by September 19th, 2008. More info from NIMH can be found here: http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-016.html. I’d also like to add that this is the first of two public comments in relation to the IACC that will be due this month – we’ll be sending out a primer on the second call for comments on the research Strategic Plan that will be due on the 30th. I have to stress here that volume is a major priority in what we want as far as responses go – we want lots of them and from lots of people. You don’t need extensive citations or anything of that nature – just send something expressing your support for quality of life, communication and similarly important research priorities. This is a top priority for us and we hope you can help us bring out our population – again, the quantity of our response will indicate to NIMH the extent to which the neurodiversity/autistic self-advocacy community should be viewed as a major stakeholder.

Regards,
Ari Ne’eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org
732.763.5530

ASAN BACKGROUND AND TALKING POINTS ON IACC REQUEST FOR INFORMATION ON SUPPORTS AND SERVICES

BACKGROUND:

The Interagency Autism Coordinating Committee (IACC) has put out a Request for Information (RFI) to seek input from stakeholders (those interested in autism), including autistic individuals, about what they consider to be high-priority issues and concerns surrounding services and supports for children, youth, and adults with ASD.

The RFI is due no later than Sept. 19, 2008, seven days from now. People should direct their comments to iaccservices@mail.nih.gov by September 19th, 2008. More info from NIMH can be found here: http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-016.html.

This RFI provides an excellent opportunity for self-advocates and allies to make our voices heard. Members of the IACC are very interested in hearing from individuals on the autism spectrum. They’ve heard  extensively from the anti-vaccine crowd, from parents, experts, researchers, and from people on the autism spectrum.

More input from autistic adults at this point, when the IACC is coming close to finalizing a budget and mission statement for the Strategic Plan, will mean more attention to the issues we consider to be most important.

The focus of this particular RFI on services and supports is an area that many autistic adults have much to say about; here is a chance to say it directly to the committee that will be allocating resources to various areas. Currently, funding is skewed toward genetic research and research into treatments and interventions.

In the time that autistic individuals have been submitting comments and testifying at IACC meetings, some positive change has been noted in the amount of funds earmarked for research into services and supports.

It is important that the IACC hear from everyone who is able to comment because part of the task of assessing importance is to determine the extent of the population that has an interest in the decisions that the IACC will make.

The IACC decides levels of funding for research into supports and services, but does not fund supports and services themselves.

TALKING POINTS

The Autistic Self Advocacy Network has developed these talking points to assist individuals in writing statements to IACC on the topic of supports and services.

The RFI lists a number of areas of concern that can be addressed. You do not have to address every topic. You can pick the ones that are the most important to you. Feel free to change the wording so that it reflects your most important priorities.

Education:

Studies need to be undertaken that assess current levels of supports and services within the public education system. When treatments and interventions that look promising are developed, additional funding must be appropriated to address implementation so that teachers, students, parents, and other education professionals are up-to-date and have access to information, training, technological resources such as AAC, and other resources.

Health and medical services (including dental):

Access to health and medical services, particularly for adults on the autism spectrum, is of paramount importance for research funding. Current studies that focus on diagnosis and treatment of children do not address the very real need for healthcare access for autistic adults who may not have insurance, may have communication difficulties and other difficulties that prevent them from obtaining adequate care. Education of health care professionals so that they can interact knowledgeable with autistic patients/clients is one area for research into services and supports.

Housing:

Research into housing alternatives, following ideas such as those in the Community Choice Act and Money Follows the Person projects, should be undertaken. Warehousing of individuals in residential centers is undesirable yet often occurs because infrastructure for other types of housing is unavailable or underutilized. Research needs to include cost-effectiveness measures, some of which are already available, which show that housing in the community costs less than residential living.

Transitions:

Research into the most effective transition options needs to be undertaken. Parents and young adults on the spectrum often have nowhere to turn after they age out of the school environment. A clearinghouse of options should be researched and developed so that families will have resources already in place.

Employment:

Research into employment options and opportunities for people on the autism spectrum needs to include components such as accommodations, training, and career counseling. Research in other areas such as treatment, interventions, diagnosis, and genetic research, can be used to counter stereotypes of what an individual on the spectrum can do for employment. Resources for trainers, counselors, employers, and others need to be developed so that autistic people are not discriminated against in the employment world because of stereotypes and misunderstanding. The IACC and NIMH can set the tone for accurate information that can help employers assess individual strengths and weaknesses rather than relying on discriminatory assumptions.

Community inclusion:

Full inclusion in the community needs to be examined and research initiatives should focus on this very important aspect of adult life, and life for children who will grow into adulthood. Community-based participatory research should be implemented that will accurately reflect the actual needs of the autistic teen and adult population.

Safety:

Research into areas that can improve safety for autistic people, throughout the lifespan, and in different situations, needs to be undertaken. Areas to focus on are keeping people on the autism spectrum safe if they have a tendency to wander, or do not understand dangerous situations. Education of parents, professionals, first responders, and autistic people should be undertaken, and the best methods for ensuring safety should be addressed by research in this area. Sometimes autistic people can appear unusual in behavior, which will attract attention from law enforcement and other personnel. Training for professionals in aspects of autistic behavior that might not be understood is a crucial area to address in order to promote the safety of all.

Older adults:

Many older adults remain undiagnosed. Some have no health insurance. Some are living in poverty or are homeless. Many older autistic adults will need medication, including medication for health problems. Research into how to best reach out to older adults who may not have an autism diagnosis but may present as in need of services should be undertaken. Research into the effect of common medications, including for non-autistic-related health problems such as diabetes, should be undertaken. Because of the possibility of extrapyramidal or paradoxical drug reactions, and the general effect of certain drugs on older people, cases should be documented so that any adverse pattern of reaction can be established. Housing, health care, dental care, and community inclusion should all be addressed and tailored to the older autistic population. Community-based participatory research can be invaluable in determining the best ways to access health and other care.

Finances:

Across the lifespan, autistic children and their families, autistic adults and elders will have various financial needs. Research into how to help families and individuals on the spectrum cover the costs associated with treatments and interventions, and a clearinghouse for resources should be developed. In addition, financial resources for autistic adults who have difficulty with financial concepts should be researched and implemented.

Guardianship:

Research into the best ways to establish guardianship should be undertaken, including autistic adults as full participants in the research process in order to establish the most ethical procedures for guardianship. Guardianship should be tailored to the needs of the individual rather than being a one-size-fits-all category, since some individuals will need guardianship in limited areas, but not all aspects of their lives.

Estate planning:

Families with autistic individuals need to take extra precautions in planning an estate, especially for individuals who may need ongoing care throughout life. Autistic adults also may need assistance with estate planning. Research leading to the development of estate planning tools that can assist families and autistic individuals in making sound decisions should be initiated.

Better dead than autistic

15 Sep

This is Heidi Roger who is the Treasurer and a founding member of SafeMinds.

Heidi is a firm, firm believer that vaccines cause autism. No shock seeing as she’s a member of SafeMinds.

What is a shock though is her attitude to human life. In an online debate regarding the book Autism’s False Prophets Rogers made the following astounding claim:

…AUTISM is no joke, it is not “oh well” so their kid will work at McDonalds instead of Trump tower, it is a nightmare without end, it is post traumatic stress disorder every day, it is not better than measles, mumps or rubella and maybe even not better than polio.

That’s right, autism is worse than Polio which can leave some kids needing an iron lung is better than autism.

Measles which has left two teenagers in the UK dead in the last two years and still kills hudreds of thousands worldwide is better than autism.

I beg to differ. Its my opinion that my autistic child is in a much better place than some poor child in an iron lung.

But then, later on, Roger topped even this heartless statement with one so heartless and chilling it made me catch my breath:

Death may be better than autism in some cases….

Is that an official position of SafeMinds I wonder? That death ‘may’ be better than autism. If anyone has any doubts about why I and others feel it necessary to devote so much time blogging against these peoples beliefs you have it encapsulated right there. Death is not better than autism.

On the homepage of this site is a pink ribbon. If you click on that ribbon you will see some photos of Katie McCarron. Katie was murdered by her mother. Her mothers defence was that death was better than autism.

Katie’s family didn’t feel that way. Her Dad, her grandma and her grandpa didn’t feel that way. I have had the pleasure of meeting her dad and grandpa and I know that they loved Katie just as she was and that what was done to Katie was a violation. To even discuss the idea that death is better than autism is a violation. How someone who is parent to an autistic child can even suggest that death is better than autism is quite frankly beyond me.

Surpise! Some people don't like Autism's False Prophets

13 Sep

There is some lively discussion amongst people who don’t like Paul Offit’s, “Autism’s False Prophets“. Many of the complaints are from people who haven’t read the book. But, hey, we can all admit that just given the title and the author, many people can accurately assess that they wouldn’t like the book.

I found Mr. Olmsted’s “review” interesting.

Kim Stagliano has given some advice in the comments:

Easy – sit at Barnes and Noble, browse a copy while you sip a latte (oopsie! don’t spill!) and then when you return the book to the shelf, tuck in a copy of Dan’s review…. And return it to the shelf labeled, “Eastern Aborginal Snail Mating Habits in the 15th Century.” Five years down the road, go back and give it a good dusting…

This is the face of vaccine-oriented autism advocacy in America.

Well, should I find a defaced copy in my bookstores, I can tell you what I’ll do: go to the front desk and see if I can purchase it at a deeply discounted rate. Then, I’ll forward the book, with a copy of that blog post and some of the comments highlighted, to someone involved with autism policy in the U.S. government. With a nice cover letter, of course. I’ll point out that, yes, I am one of the parents who are angry at the vaccine-activists co-opting the autism agenda. I’ll also point out who Ms. Stagliano is in relationship to AoA/Generation rescue. I’ll ask, “is this the sort of representation we need on a Secretarial Level autism advisory board to the secretary of HHS?”

Personally, I’m not waiting to possibly find a defaced copy. I’m sending a few copies out to some people in government.

You can too. Amazon.com (and other booksellers) allow you to send books to people other than yourselves. You can look up the address for your representative or senator online.

Consider putting “attention legislative analyst for healthcare” and follow up with an email (you can contact your Senators and Representative via their webpages). Feeling a little tight on cash? Send an email and ask your legislators to get the book for themselves and their healthcare legislative analyst.

There are, of course, many other people influential inside and outside of government who could use a copy of Autism’s False Prophets, so you don’t have to feel limited to the Congress and Senate.

It doesn’t hurt to check before sending: He/she may have already read it!

And, yes, I will remember this idea when the new government takes office in early 2009.

Arthur Allen – vaccine skeptics vs your kids

11 Sep

Whilst, I’m not sure that the people Arthur is writing about are skeptics as I understand the term (having a scientifically valid basis for not accepting an argument or position), I know what he means. And he’s right that it is this group of people vs the health of people everywhere.

The sub-header is even more accurate ‘immune to reason’. One only has to take a look over at the recent rantings on a certain blog we all know about where the latest themes are:

1) Presidential candidate Barack Obama is now a big pharma shill because he told one of them: “I am not for selective vaccination, I believe that it will bring back deadly diseases, like polio.”.

2) The latest study in a long line of studies that show once more there is no link between MMR and autism is both flawed and exonerates one of their heroes.

3) Kathleen Seidel is wrong because….uh….well, no one knows why but she must be. Apparently.

Immune to reason indeed.

As Arthur points out, there is a great deal at stake:

…in the last trimester of her pregnancy, Helena Moran caught a cough that she couldn’t get rid of. She figured she’d picked up the germ—whatever it was—from one of her patients at a Boulder dentist’s office. But the real nightmare began after her daughter, Evelina, was born: The baby began to cough and cough, and then she’d curl up in a little ball and turn blue. At the emergency room, she was diagnosed with whooping cough. She spent the next five weeks in intensive care and suffered permanent lung damage.

Now, this isn’t *all* the fault of the so-called autism community, but as I’ve discussed before, I’m ashamed to say that a lot of it is.

….the movement got a huge boost from the controversy over the mercury-laden preservative thimerosal, which some theorized might be linked to autism. That link has been disproven—by, if nothing else, the fact that autism rates remained steady after pediatricians and public health authorities told manufacturers to stop making thimerosal-containing childhood vaccines in 1999. But the anti-vaccine movement has kept going, finding ever new reasons to distrust immunization.

The are a lot of zealots out there who have fed upon the autism community. A parent who might not believe vaccines case autism listens to horror stories and reads links sent to them from such places of quackery as whale.to who are nothing to do with the autism community but who market their own brand of ridiculousness (the owner of whale.to believes dolphins can manipulate gravity and has the pictures to prove it!) regarding vaccines and the autism parent greedily sucks it down.

Arthur discuss the practice of abusing ‘religious exemption’ by these people:

Right now, in many states, all it takes to get an exemption from vaccine requirements is signing a form. Some, including a group of doctors at Johns Hopkins University, have proposed making it harder—allowing a philosophical exemption only after parents demonstrate a good-faith effort to educate themselves.

But an article I read in yesterdays ‘Edmond Sun’ stated:

….a person “who has reached the age of majority and is mentally competent to do so may justifiably refuse immunizations for himself or herself, but may not impose this refusal on a child, who has no choice in the matter.” Courts have consistently upheld this principle.

That makes sense to me. Who would want to refuse such a simple thing that has no link of any kind to autism?

Arthur closes with the following:

But while questioning authority is healthy, facts are facts. If vaccines really were responsible for autism, it would be too much to ask parents to do the altruistic thing. But more than a dozen studies have failed to discover such a link—and not a single legitimate study has shown that one exists.

He’s spot on. All the celebs and all the money in the world cannot change that simple fact. We need to get past this. Those who believe autism is caused by vaccines need to put up or shut up. They are holding up progress on autism research and causing the health of our societies to suffer.

I urge readers to visit Arthur’s piece and read the comments. The first few demonstrate exactly the sort of mindset Arthur is talking about – the one’s who bring shame on the autism community. They truly are immune to reason.

IACC Strategic Plan: How can I understand what is happening

10 Sep

We have discussed the IACC Strategic Plan before. They are looking for feedback. We’ve looked at the issues of vaccines, and the first section “When should I be concerned” already.

The second major section of the IACC draft Strategic Plan looks at the question of understanding what is autism.

Again, I am only pulling out the “Research Opportunities” and the “Goals” sections to keep this brief. Please, take a look at the entire document if you have the chance.

That said, I will take the first paragraph from the introduction to this section:

One of the greatest barriers to progress in determining the biological bases of ASD has been the heterogeneity of the spectrum. A clear need exists to advance understanding of the many phenotypes of ASD, including studies that link genotype to phenotype, investigations of natural and treated history, analyses of genetic interaction with environmental exposures, and studies of co-occurring medical conditions.

It’s a big (BIG) undertaking. Here is an outline of how they are going about this. Take a look and, please, send them comments. The IACC website has details, but, basically, it boils down to email them (use the link, the subject line is already filled in!).

Research Opportunities

• Multi-disciplinary, longitudinal, biobehavioral studies of children, youths, and adults beginning during infancy that characterize developmental trajectories and identify ASD risk factors, subgroups, and potential biological targets for intervention. Such studies could include:
o High-risk siblings of children, youths, and adults with ASD, children without a family history of ASD, and typically developing children
o Multi-disciplinary assessments of brain imaging, metabolic and immune markers, microbiomics, electrophysiology, and behavior

• Research on females with ASD to better characterize clinical, biological and protective features.

• Human and animal studies that examine immune, infectious and environmental factors in the occurrence of ASD.

• An international public-private collaboration to expand current postmortem brain and other tissue resources (e.g., skin fibroblasts) to increase the acquisition, quality, type and availability of biomaterials relevant to studying the pathology of ASD.

Short-Term Objectives

• Establish an international network of brain and other tissue (e.g., skin fibroblasts) acquisition sites with standardized protocols for phenotyping, collection and distribution of tissue by 2010.

• Support at least four research projects to identify mechanisms of metabolic and/or immune system interactions with the central nervous system that may underlie the development of ASD during prenatal-postnatal life by 2010.

• Launch three studies that specifically focus on the neurodevelopment of females with ASD by 2011.

Long-Term Objectives

• Complete a large-scale, multi-disciplinary, collaborative project that longitudinally and comprehensively examines how the biological, clinical, and developmental profiles of children, youths, and adults with ASD change over time as compared to typically developing individuals by 2020.
_______________________________________

In many ways, I could see this section getting the least attention from people responding. At the same time, it is the cornerstone for future research. Really, if we understand what is autism (in its many forms) won’t we have a better idea of how to treat it and how it originates?

Take a look and, if you have any thoughts, say “this looks good” or “you should include XXX in this section, email them.

Dan Olmsted suffers by comparison

9 Sep

Ever since his unexplained sudden departure from UPI, Dan Olmsted has been working on his Magnificent Octopus entitled ‘Mercury Rising’.

He keeps his keen investigative journalism skills to the fore by writing the occasional blog piece for Age of Autism. These skills have included the scintillating exposé

“Where are the autistic Amish?” he asked. “I have come here to find them, but so far my mission has failed, and the very few I have identified raise some very interesting questions about some widely held views on autism.”

Except that Dan Olmsted never visited Clinic for Special Children in Strasburg, where

Dr. Kevin Strauss, MD, a pediatrician at the CSC. “We run a weekly vaccination clinic and it’s very busy.” He says Amish vaccinations rates are lower than the general population’s, but younger Amish are more likely to be vaccinated than older generations.

Strauss also sees plenty of Amish children showing symptoms of autism. “Autism isn’t a diagnosis – it’s a description of behavior. We see autistic behaviors along with seizure disorders or mental retardation or a genetic disorder, where the autism is part of a more complicated clinical spectrum.” Fragile X syndrome and Retts is also common among the clinic’s patients.

This is backed up by the fact that in April of last year, a study was published that showed that the Amish vaccinate.

Responses were received by 225 (60%) of the 374 Amish households in the community with children aged <15 years. An additional 120 responses were received by households without children. A total of 189 (84%) households with children reported that all of their children had received vaccinations; 28 (12%) reported that some of their children had received vaccinations; and 8 (4%) reported that none of their children had received vaccinations.

Among all respondents who knew their own vaccination status, 281/313 (90%) reported that they had received vaccinations as children.

As we can see, Dan’s investigative journalism is of the highest order.

Today, he has decided to maintain his high standards by doing what he does best – speculating wildly. This time its an absolute doozy.

Determined to hang on to the thiomersal idea at all costs (despite the fact that thiomersal has been out of all paediatric vaccines since 2002 and autism rates are still climbing in the US, just like the UK and just like Japan), Dan takes every bit of evidence that someone once walked past the house of a man who’s first cousin worked at a paint factory as highly suggestive of metal poisoning. In order to justify his new tome (entitled ‘mercury rising’ – don’t bother looking for it anywhere) he _has_ to keep interest in mercury up. Despite the fact that its quite clear to anyone with an ounce of common sense that the thiomersal hypothesis’ time has come and gone, without it, he has no book, hence no book deal, hence no prestige.

So, back to Dan’s latest genius reportage. Dan has just finished reading Autism’s False Prophets and is quite clearly not pleased with the coverage given to Kathleen.

Kathleen, you see, is everything that Dan Olmsted is not. He is slapdash, she is thorough. She checks sources, he thinks they’re what you pour on your dinner. She uncovers _actual_ wrongdoing, he thinks wrongdoing is solely confined to anyone with the title ‘Dr’.

Offit describes Seidel moving to New York City “where she met her future husband, a guitar player. She worked for Project Orbis, a flying ophthalmalogic surgical teaching hospital. …”
Whoa. A flying ophthalmalogic surgical teaching hospital? I suppose it’s possible she just booked their flights and never set foot on the plane, but assuming she was part of the team, I strongly suspect Kathleen Seidel was exposed to thimerosal occupationally.

Ever the principled and thorough reporter, Dan utterly fails to do what any n00b reporter would know to do – check your facts. There was one easy way Dan could’ve saved himself a fair amount of embarrassment over this blog post: he could’ve (get ready for the novel idea Dan!) _asked Kathleen_ . And when he did, she would’ve told him that booking flights did indeed fall under her remit *as a Secretary*. So did dictation, typing and general filing. Knowing Kathleen’s pretty awesome taste in music, I suspect the closest she got to any kind of metal was attending a LedZep gig or two.

Olmsted goes on to say:

Laugh me off if you want, but I have spent a lot of time looking for plausible links between parents’ occupations and autism in their children, and I know them when I see them.

Please, join with me:

BWHAHAHAHAHAHAHAHAHAHAHA!

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