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Age of Autism to Autism Families: Make your children suffer

24 Nov

Your pretty red house is engulfed in a roaring fire. You keep feeding the fire. Maybe petrol will help. Pour it on. Maybe some oil. Pour that on too. You don’t know. Nobody knows. Some guy you met on the internet tells you he’s a fireman and that the best way to stop a fire is to try and smother it with bone dry hay.

Your burns are bad. Your kids burns are worse. Do you throw them out of a window where a few other ‘firemen’ are holding on to a sheet made of melting plastic? Or do you push them down the stairs, where the rest of the injured and dead families are?

Thats my response to the utterly asinine response Kim Stagliano posted on the Age of Autism blog today to the Chicago Tribune’s series of articles on the quacks and hacks infesting the autism community. She wheels out the same old strawmen…

That’s my response to the Chicago Tribune accusing us of performing “uncontrolled studies” on our kids. (Our medical doctors are thorough and safe, by the way.)

I know of at least two doctors associated with the biomed movement who are on sex offenders registers. I know of one DAN! doc who is associated with the death of a child. I know of one other who hospitlaised a child. I know another who performed exorcism on autistic kids. I know another who is under investigation for more than one complaint.

And why does it bother journalists like Trine Tsouderos and Pat Callahan that some of us are improving our children’s lives?

I can’t speak for these journalists but I’ll speak as the parent (and step-parent) of two autistic kids. You’re not improving your childs autism. Thats the claim that these journalists are challenging. I challenge Kim Stagliano or Mark Blaxill to show the autism community where a biomed treatment discussed by the Tribune led to a measurable and scientifically documented improvement in their child’s autism. In fact, I can’t think of a child belonging to the founders of Autism FAIR Media, Generation Rescue, Age of Autism, SAFE MINDS or the NAA that has either been cured of their autism or made any sort of progress towards that end result as a sole consequence of biomed treatments. Why? Because in terms of curing/recovering/treating autism *they do nothing* . As a direct consequence of that obvious fact, parents continuing with detox, urine injections, exorcism et al are – as the Tribune indicate – experimenting on their children.

Why don’t the so-called “vaccine safety” orgs talk about vaccine safety?

30 Oct

I really do plan to get back to real autism related subjects. I do. This subject just came up yesterday and it really bugs me so I decided to write something quick.

One of the most common statements from the groups (Generation Rescue, Think About Curing Autism (TACA), the National Autism Association, SafeMinds….) who promote the vaccines-caused-autism-epidemic idea is that they are “vaccine safety” groups, not “anti-vaccine”. The self-named “National Vaccine Information Center” is, I would think, supposed to have vaccine information.

One vaccine these groups love to hate is Rotateq, a vaccine against rotavirus infection. Why? Because it was invented by a team including Dr. Paul Offit, who just so happens to be one of the most vocal critics of the vaccine-caused-autism-epidemic.

Take, for example, this comment by SafeMinds member, and Age Of Autism blogger Mark Blaxill:

“Paul has saved hundreds of thousands of lives (granted mostly in underdeveloped countries, but rotovirus still kills a small few in the US).”

That’s quite an extravagant assertion, and almost certainly false. What evidence do you have that Rotateq (Offit’s invention) has been adminstered in sufficient quantities to prevent death in developing countries from complications of diarrhea? Rotateq is deployed in only one country besides the US. Here in the US we know Rotateq (and Rotashield before it) has CAUSED death and have little information that it has prevented any.

The consistent hyping of the benefits of marginally beneficial vaccines is one of the most disturbing features of a vaccine development industry run amok. Rotateq is perhaps the most egregious example of a vaccine product that provides next to zero benefit in the markets in which it has been deployed.

Let me be clear. In the markets in which it might have value, Rotateq is far too expensive to be widely deployed and is therefore rarely used. In the markets in which it is not needed, it is mandated at high prices and used widely with little benefit and documented (and almost certainly underestimated) serious risk. Those mandates and high prices are justified by a marketing non sequitor that Josh perpetuates here: pointing to deaths outside the geography in question as justification for a vaccine blockbuster that can have no impact whatever on those deaths.

Orwell never dreamed of doublespeak as bad as this.

What made this comment stick in my mind is the unsupported claim that Rotateq “CAUSED” death (nice use of all caps, there, by the way).

I am also drawn to the common belief (not directly expressed in the above quote) that there is no or only minimal safety research done.

This week, the CDC put out an MMWR (Morbidity and Mortality Weekly Report) on the effects of Rotateq. The cliniical trial showed that Rotateq works. The surveillance shows Rotateq works–the number of submitted samples that tested postive went down after Rotateq was introduced.

The big point I’d like to bring to light was a recent talk given at the Advisory Committee on Immunization Practices (ACIP) meeting. They are monitoring intussusception in children given Rotateq. Intussusception is an intestinal problem, potentially fatal, that was linked to the previous rotavirus vaccine. It is why that vaccine, Rotashield, was pulled from the market. As such, it is good an proper that they monitor intussusception with Rotateq.

The results?

Results provide no evidence that RotaTeq®receipt is associated with an increased risk for IS [intussusception] 1-30 days or 1-7 days following vaccination.

Typically those trying to claim that Rotateq is dangerous use the Vaccine Adverse Events Reporting System (VAERS). Any event reported to VAERS is taken to be caused by the vaccine. VAERS is a “passive” system. People report into VAERS and no one checks that the diagnoses are accurate. Also, intussusception happens even without vaccines. So you really can’t take every VAERS report as a causal event–i.e. just because someone reports to VAERS that a child had intussusception sometime after Rotateq, that doesn’t mean Rotateq caused it.

Do I expect people like Mr. Blaxill to stop claiming that Rotateq is dangerous? No. But I put this out there to take away any last shred of “plausible deniability”. They, the self-styled “vaccine safety” groups, don’t report on actual vaccine safety studies. That doesn’t mean they don’t read them and know about them.

The war on Tom Insel and the IACC

23 Oct

Tom Insel is director of the National Institute of Mental Health (NIMH) but he is better known to readers of this blog as the chair of the Interagency Autism Coordinating Committee. If you read other autism blogs, he’s probably very well known to you, as he has been the target of a concerted attack from the vaccines-cause-autism groups for a few months now. They even got the publicist, David Kirby, to take their battle to the public in a CBS interview.

Let me take a moment to make a side point. The vaccines-cause-autism groups (SafeMinds, Generation Rescue, the National Autism Association, Talk About Curing Autism (TACA)…I’m probably missing one or two), are basically a single consortium as evidenced by their single blog and their shared membership. I don’t see the need to treat them as separate entities. I really don’t see that they should be given multiple representations on the IACC.

I’ve been watching the IACC pretty closely for some time. I’ve also been watching the vaccines-cause-autism consortium. I’ve been watching the consortium build pressure against Dr. Insel.

One thing I’ve noticed: this level of pressure directed at Dr. Insel wasn’t always the case. Less than a year ago, Dr. Insel was not their target.

Take a look at one of the classic pieces of IACC intimidation: a piece called “Grinkers Stinker“. This is dated January, 2008. It was timed to coincide with a 4-day workshop that was the kick-off for the Strategic Plan process.

“Grinker’s Stinker” was a piece about the Dr. Joyce Chung, the former IACC coordinator. She is the wife of Prof. Roy Richard Grinker, anthropologist and author of the book Unstrange Minds. Dr. Grinker has publicly stated that he accepts the scientific consensus that vaccines did not cause an epidemic of autism. Dr. Chung has made no public statements (at least that I can find), but the lack of actual information about her or her opinions didn’t stop a blog post decrying her position on the IACC. From the blog post:

Does Joyce Chung agree with her husband? Did they ask her this question before she took the job?

Oddly, the last comment to that blog piece, by Generation Rescue’s “DC Liason” Kelli Ann Davis, starts with the question, “Can I suggest that we try and put an end to all the mudslinging?”

History has proven that, no, the Age of Autism can’t put an end to the mudslinging. Unfortunate, that.

Take a look at the blog post. There is no mention of Dr. Insel. No one decrying his “lack of leadership”, no one claiming “collusion” or “malfeasance”. None of the mudslinging terms currently used against members of the IACC, especially Dr. Insel. In fact, the first mention of Dr. Insel is in the comment by Ms. Davis. In her comment Ms. Davis suggests that Dr. Insel will be watching out for conflicts of interest.

Times certainly have changed. The Age of Autism likes to demonize those it disagrees with, and Dr. Insel certainly has been a recent target.

What happened?

Dr. Insel (a) had the IACC reconsider an initiative to call for a vaccine-autism study to be included in the Strategic Plan and (b) spoke before a congressional hearing about why vaccine/autism studies are not a high priority.

Not surprising to many of the readers here, I am sure, the vaccines-cause-autism consortium have a single issue (vaccines). As long as Dr. Insel’s position on vaccine/autism research, there was hope for the consortium and they left him alone. Once his current opinion formed and was public, he was public enemy number one. Yes, Dr. Paul Offit (vaccinologist and outspoken critic of the notion that vaccines cause autism) has been superseded.

Recently, Dan Olmsted (owner of the Age of Autism website) called for Dr. Insel to resign. Again, it boils down to the single issue: vaccines.

So, here we are. The vaccines-cause-autism consortium has declared war on Tom Insel for opposing their single-item agenda. If you think “war” is too strong a word, take it up with Mr. Olmsted. In referring to the recent incident where notes from an IACC member were made public:

…notes dropped on the floor (see the notes here) at the IACC, recovered by friendly forces and reported on our blog…

Yes, the Age of Autism people are “friendly forces”.

Here’s my perspective on Dr. Insel, for whatever it may be worth. He is the chair of the IACC. In my opinion, his role is to run the meetings and manage the staff. He should be getting good people in to serve on the IACC and the subcommittees and good people to consult on the topics that are discussed. Basically, his role is that of a facilitator–get good people together with the tools they need to do their job. He needs to be knowledgeable enough on the subject (autism) to do this.

You know what? Given the fact that his full time job is director of the NIMH, he’s actually done a pretty good job.

Is there room for improvement? Heck yeah. How about putting a greater emphasis on research into the needs of autistic adults? The majority of autistics are adults. And yet only 5% of the funding is being applied to this critical area.

But, of course, the squeaky wheels (the vaccines-cause-autism consortium in this case) get the grease. The squeaky wheels have been calling for research into environmental causes of autism. Tens of millions of dollars are being focused on this. Why are the squeaky wheels unhappy? Because the squeaky wheels didn’t really mean “environmental causes”. That was only a code word for vaccines.

This level of tension is not just sad. It is detrimental to the progress of the IACC. There are a lot of autistics, parents, professionals and organizations who are interested in working with the IACC. Why spend any more effort on the groups that have declared war?

(note, I made a number of changes in this piece shortly after publishing it)

It’s time to stop the intimidation tactics towards the IACC

21 Oct

The Interagency Autism Coordinating Committee (IACC) is group of government employees and autism community stakeholders who are chartered with coordinating research activities within the U.S. government’s Department of Health and Human Services (HHS).

The official charter is:

The Interagency Autism Coordinating Committee (Committee) shall coordinate all efforts within the Department of Health and Human Services concerning autism spectrum disorder to combat autism through research, screening, intervention and education. The Committee’s primary mission is to facilitate the efficient and effective exchange of information on autism activities among the member agencies, and to coordinate autism-related programs and initiatives. The Committee will serve as a forum and assist in increasing public understanding of the member agencies’ activities, programs, policies, and research, and in bringing important matters of interest forward for discussion.

The IACC predates the Combating Autism Act (CAA), but has taken on the role of coodination and strategic planning for the CAA.

This is no small effort. We are talking about a group that helps to set the goals for about $100M in research funding a year. The U.S. government’s research efforts into autism are the largest in the world. The research portfolio covers causation through supports for autistic adults.

I don’t think I will surprise anyone when I say that the autism communities, like any communities, have many different ideas of what focus should be placed on autism research. I would also expect little argument that the loudest voice in that discussion comes from the groups promoting the notion that vaccines caused an autism epidemic. Most of these groups are sponsors of the Age of Autism blog.

These groups lobbied hard to get vaccine research included in the Combating Autism Act. The failed. They did manage to get some senators to mention vaccines in the “colloquy“. These were statements made by senators when the Act was passed. Basically, these are speeches, not law. These statements were also not very strong. Consider this statement by Senator Enzi:

However, I want to be clear that, for the purposes of biomedical research, no research avenue should be eliminated, including biomedical research examining potential links between vaccines, vaccine components, and autism spectrum disorder. Thus, I hope that the National Institutes of Health will consider broad research avenues into this critical area, within the Autism Centers of Excellence as well as the Centers of Excellence for Environmental Health and Autism. No stone should remain unturned in trying to learn more about this baffling disorder, especially given how little we know.

The strongest argument that can be made is that three senators made a nonbinding statement that the National Institutes of Health should “consider” research on vaccines.

The Combating Autism Act was signed over three years ago. Since that time it has become even more clear that vaccines are not a primary cause of autism. The two major theories that the MMR vaccine or that Thimerosal cause autism have been shown to have very little scientific basis. Both were discussed at length in the Autism Omnibus Proceedings. The MMR causation theory has already been rejected as “not even close” and upheld by three separate appellate judges. The thimerosal theory has not been decided as yet, but the science was no better than that used for MMR. I expect that the Thimerosal theory will suffer the same fate as the MMR theory.

The number of people applying to the “vaccine court” for compensation for autism peaked six years ago. 2,437 families petitioned the Court for hearings alleging autism as a vaccine injury in 2003. In 2008 that number shrank to 253. The vaccines-cause-autism theory is clearly losing ground even within the autism community.

That doesn’t mean that the vaccines-cause-autism organizations are giving up. Quite the opposite. They are ratcheting up the pressure, focusing on individuals.

I actually find it hard to consider the vaccine/autism groups to be separate entities. These groups are SafeMinds, Talk About Curing Autism (TACA), the Autism Research Institute (ARI), Generation Rescue, and The National Autism Association (NAA). They do vary in their approaches to some topics. For example, TACA and Generation Rescue put more resources into direct contact with families than, say, SafeMinds. But, when it comes to lobbying about vaccines, they are pretty much a single organization, sharing a significant amount of key personnel.

These organizations are represented on the IACC by Lyn Redwood of SafeMinds. The grassroots activist efforts of the organizations is coordinated through their blog, the Age of Autism. It is a particularly clever and effective construct: the advocacy organizations can claim to be separate from the particularly nasty rhetoric of their own blog. As a separate entity, the finances of the Age of Autism blog will not be made public.

That all said, the Age of Autism should be considered the voice of these organizations and the actions coordinated on that blog are the actions of its parent organizations.

I can understand why groups such as SafeMinds or Generation Rescue would want to be able to claim some distance from the Age of Autism (AoA). AoA is used to coordinate serious intimidation efforts.

The recent departure of Dr. Story Landis from the IACC was engineered by AoA. They found notes made during an IACC meeting and planned a surprise attack to coincide with an IACC meeting. As an ironic twist, AoA got someone sympathetic to their cause to resign the IACC.

AoA has also targeted IACC member Yvette M. Janvier, M.D., twisting her words “the idea that autistic kids are sick offends me!” into “I am offended by sick autistic kids”.

AoA launched an attack on IACC coordinator Joyce Chung. This coincided with a week long IACC meeting to iron out the Strategic Plan. Her “crime”? She is married to Richard Grinker, author of Unstrange Minds. Dr. Grinker is public in his belief that there has not been an epidemic of vaccine-induced autism, a belief held by the vast majority of the autism research community. What does Dr. Chung have to say publicly on the subject? Nothing as far as I can see. What actions did she take that warranted an attack? None.

The good people at AoA have attempted legal intimidation as well. They got a Congressional Oversight Committee to investigate the IACC. When that didn’t pan out, they sought “legal advice” on alleged FACA violations. No word on what, if anything, became of that effort either. The Age of Autism isn’t shy about touting their attacks. It would seem safe to assume this one failed.

AoA has recently set their sights on the IACC’s chair, Dr. Tom Insel. I am sure this came as no surprise to Dr. Insel. Earlier this year he called for a re-vote on a proposal to add a vaccine study to the IACC’s Strategic Plan, and later made public statements in a congressional hearing that there wasn’t enough data to warrant a vaccine-autism study.

Other than being bold enough to discuss the view held by the vast majority of autism researchers, what is Dr. Insel’s greatest crime? His brother invented a vaccine. Yes, Dr. Richard Insel helped develop a vaccine for Haemophilus influenza B (Hib). This vaccine has been quite effective in reducing Hib infections. But, any contact with vaccine research or company is considered a fatal conflict of interest to the bloggers at the Age of Autism.

I’m sure that there is more going on behind the scenes.

If this were all to the story, it would be sad but uninteresting. Unfortunately, there is fallout from all of this intimidation. I already know that good researchers have avoided autism as a subject in order to avoid the groups represented by the Age of Autism. I suspect that good people are avoiding participating in the IACC meetings as well. But, the most direct fallout is that the IACC members are unable to speak their minds on the subject of vaccines. Beyond vaccines, they have to live in fear of any possible infraction of the rules or any statement that could be misinterpreted will be used against them. A prime example was given above where “the idea that autistic kids are sick offends me!” was warped into “I am offended by sick autistic kids”.

If this were some minor, make-work bureaucratic committee with no real impact I wouldn’t care. But this is the group that sets the plan for the largest autism research in the world. Not only is this sort of intimidation a crime in general, it is hurting my kid’s chances at a better life.

It is time for the intimidation to stop. The Age of Autism bloggers should learn a lesson from their recent, childish attack. Acting out without thinking can hurt even them. This event is being noticed. Both the journals Nature and Science have blog posts about this recent debacle. The Simons Foundation interviewed the director of the NIH on the subject.

I’ll say it again: it is time for the intimidation to stop.

How Much Longer?

9 Sep

The National Autism Association has a campaign afoot to raise awareness with the catch-phrase “how much longer”.

As in these quotes from their campaign:

“FDA, HOW MUCH LONGER WILL YOU APPROVE VACCINES THAT AREN’T NEARLY AS SAFE AS THEY COULD BE?”

Or

“HOW MUCH LONGER, NIH, before you adequately fund environmental research?”

I have a question:

How much longer, NAA, before you act like a reasonable member of the autism communities? (substitute Generation Rescue or SafeMinds for NAA, they are all basically the same group).

The NAA quote about NIH shows a lot about the NAA’s intent. “Adequately fund environmental research”. A lot of money is going to environmental research for autism causation at NIH. A lot. But, until it includes vaccine-causation, no amount is going to be considered “adequate” to the NAA.

NIH and most of the medical community doesn’t think that there is a good reason to do vaccine-causation research. But that isn’t the reason why groups like NIH don’t fund research. Let’s face it, NIH have an entire center devoted to spending on money that most of the medical community considers a waste.

The NAA would like to place the blame on everyone. Everyone else, that is. It’s a vast conspiracy, funded by Pharma dollars, with everyone afraid to admit the truth about the damage they caused. Do I have that right, NAA?

The real problem, NAA/Safe-Minds/Generation Rescue, is that you are your own worst enemy.

Ask yourselves a very simple question: if NIH is willing to spend money on projects with little hope of success, if NIH is willing to spend money on questions where the general expectation is that the answer will be no (remember that chelation study?), if they are willing to do that, why not spend money on a vaccine-causation project?

To answer that, you have to ask, what is the cost of a vaccine-causation project?

The real cost isn’t calculated in dollars. The real cost in is the damage to public health that such a study would bring. Yes, funding a do-vaccines-cause-autism project would hurt public health.

How can I say that? Because you guys at NAA (and sister orgs) would use the fact that NIH has funded such a project to attack vaccines. The entire time from the approval of the funds to the time the study results were published, you would be claiming “See, the government thinks vaccines are causing the autism epidemic”. What happens when the project is done? If the research doesn’t agree with your position, you will reject it. That is your clear track record.

Besides, what quality independent researcher would take on such a project? Anyone able to do such a study is is likely smart enough to realize that he/she would be hounded for the rest of his/her life if he/she doesn’t publish results that agree with your preset expectations.

You guys are stuck in the past. A past where you could say “vaccines caused an autism epidemic” and people listened. It’s time to listen to the people who support you. Really listen. Listen and realize that just because someone is supporting you doesn’t mean that he/she supports everything you say. Case in point: Dr. Bernadine Healy. Does she say there has been an epidemic of vaccine-induced autism? Does she say the epidemiology is junk? No. She says there may be small groups. Groups too small to be detected in the epidemiology that’s been done. That’s really, really small, by the way.

Get it? Even your supporters say you haven’t proven anything and that at most you represent a small fraction of the autistic population. You’ve been able to “wag the dog” for a long time, but that time is over. It’s time to realize that at most you would be a small part of the autism communities. It’s time to realize that the autism communities are part of a larger disability community.

If this seems too complicated, here are a few simple steps you can take to rebuild your credibility:

1) admit that thimerosal did not cause an “autism epidemic”
2) admit that MMR did not cause an “autism epidemic”
3) stop discounting all science that disagrees with you.
4) stop smearing people who disagree with you.
5) stop creating misleading faux research.
6) stop trying to discredit fine American institutions.
7) stop denying the existence of a large number of adult autistics.

Oh there’s more. A lot more.

As I said above, NIH is willing to fund research that constituents want even when it is very likely to be fruitless. But you have made it expensive to perform from a public health perspective and won’t accept any answer except the one you want.

How much longer until you get vaccine-autism research? You tell us. You are the ones in the way. Your “how much longer” campaign probably just set you back at least a year.

You probably see this as harsh. In reality it is probably the best advice you have been given all day.

Jenny McCarthy: I’d like to see some action behind those words

18 Aug

Jenny McCarthy is on the cover of the latest Cookie Magazine. As part of her interview, she asserts that she is “pro safe vaccine”, not anti vaccine.

Now McCarthy, along with her boyfriend, actor Jim Carrey, serves on the board of directors of Generation Rescue, an advocacy and research organization that calls for eliminating toxins in vaccines and for delaying shot schedules.

Notice “delaying” shot schedules.

Another quote, talking about her own experiences:

Going over his medical history now, she sees a link between a series of ear infections, a severe case of eczema, and a hepatitis-B booster shot. “Looking back, I’d say, ‘God, if a kid is having more than seven ear infections in a year and he’s got eczema, there are some issues here—his immune system is obviously under attack, and we need to put him in the sensitive category. Let’s just delay some of his shots,’ ” she says. “Not eliminate, delay.”

Again, note the phrease “Not eliminate, delay”.

This isn’t exactly new. The Generation Rescue website page on vaccines tells parents to “consder delaying vaccines”. As near as I can tell, GR has had a statement like this since the vaccines page was first put up.

But here is where actions and words part company for both Jenny McCarthy and Generation Rescue. They have “recommended” vaccine schedules. Their “favorite” schedule, included in their paragraph on “consider delaying” vaccines, states flat out: no live virus vaccines. I.e. no Measles, Mumps, Rubella or Varicella (chicken pox).

That’s not “delay” that’s “eliminate”.

Let’s compare the GR alternative schedules to the CDC recommended schedule, shall we?

The childhood schedule includes vaccinations against 15 diseases:

Hepatitis B
Rotavirus
Diptheria
Tetanus
Pertussis
Haemophilus influenzae type b
Pneumococcal
Polio
Influenza
Measles
Mumps
Rubella
Varicella
Hepatitis A
Meningococcal

Now let’s check GR, Jenny McCarthy’s organization, and their recommended schedules:

First, GR’s “favorite” schedule only has protection against 4 diseases.

Pertussis
Diptheria
Tetanus
and, Polio

Again, that’s not “delay” that’s “eliminate”.

For their second option, GR claims you can “turn back the clock” and use the 1983 schedule. I don’t know how anyone could think that is supposed to be a “delay” in shots. Here’s the count (6 diseases covered):

Diptheria
Tetanus
Pertussis
Polio
Measles
Mumps
Rubella

As the third option, Jenny McCarthy’s organization suggests you “go Danish” and use the Denmark schedule (7 diseases):

Diptheria
Tetanus
Pertussis
Haemophilus influenzae type b
Polio
Measles
Mumps
Rubella

Jenny McCarthy *says* she is promoting “delaying” vaccines. Her actions speak much louder than her words.

If you want to say you are for “delaying” vaccines, then change your website. Pretty simple.

Of course, when you do, I’d love to see the science showing that the delayed schedule you pick is safer than the current one.

Jenny McCarthy needs to learn: autistic is not psychotic or crazy

6 Aug

Last year Amanda Peet had a story in Cookie Magazine. She came out very pro-vaccine. Jenny McCarthy “jumped” on the story (delayed to be coincidental with Jenny McCarthy’s need for publicity).

This year, Cookie Magazine has a story with Jenny McCarthy. There is a lot bad in there. I am saving the worst for last (you can skip to the bottom if you want).

As to be expected in a magazine article about a celebrity, Ms. McCarthy is pushing her own business interests. In this case, her educational DVD collection:

“Through a series of entertaining vignettes featuring a cast of kids (including Evan), puppets, and dolls, the DVDs model correct social behavior and tackle everything from sharing and patience to maintaining conversations with friends to sibling rivalry. “Any parent will tell you that her kid watches a show and imitates it,” McCarthy says of her inspiration for the idea.”

I find that statement really strange for educational videos targeting autistic kids. I can think of a number of parents of autistic kids who would disagree with “Any parent will tell you that her kid watches a show and imitates it” From the book “Educating Children with Autism” by the National Academies Press:

Studies over longer periods of time have documented that joint attention, early language skills, and imitation are core deficits that are the hallmarks of the disorder.

Another quote from the Cookie Magazine story:

McCarthy’s widely publicized journey began in 2004, when her son had a seven-hour seizure and went into cardiac arrest. When he got home from the hospital, Evan was put on a heavy dose of antiseizure medication, which kept him awake for four days and induced hallucinations that made him not recognize his mom and bang his head against the wall until he bled. “I ran out of my house and into my driveway and screamed at the top of my lungs to God to just take him away, because I loved him so much and he was in so much pain,” McCarthy says of the period she describes as her “second rock-bottom” (the first being the moment Evan’s heart stopped momentarily).

A couple of observations.

First, I wish Cookie Magazine had clarified the point as to how long after his vaccination the seizure came. His MMR was at 14 months, his first seizure was after he was 2.

Now for the second. Did Jenny McCarthy really write that she had wished her child would be taken by god?

I didn’t want to blog this story. Why give Jenny McCarthy more publicity? Well, here’s the paragraph that made me want to blog:

McCarthy is leading a more normal life now, too, after having felt very alone in her first marriage, to Evan’s dad, and suffering what she calls a “breakdown” two years after Evan went into cardiac arrest and suffered those terrifying seizures. “When your kid is psychotic or crazy, you go into this place of shock so you can remain calm,” she says. “A problem a lot of moms [of autistic children] have is that they need to get out all [their emotions] later. I kept mine bottled up for two years, and then I finally released all this pent up fear, sadness, and anger. I just cried and cried and cried and cried and cried.”

“When your kid is psychotic or crazy, you go into this place of shock so you can remain calm”

I just don’t know what to say. Autism is not “crazy” or “psychotic”. Why is this woman chosen by the press to represent autism?

Maybe next year Cookie Magazine could interview a mother who is autistic or, at least, has an autistic child.

The kid’s autistic: the Generation Rescue website says so

30 Jul

If I were good at being respectfully insolent, I might try to make a joke out of how Generation Rescue has changed into Generate Revenue over the past year or so.  Generation Rescue’s website now offers multiple ways for people to spend money. From “let’s go shopping” to the multiple “shopping affiliates”, a portion of everything you spend from supplements to saunas could go to Jenny McCarthy’s autism organization.

But insolence is best left to the pros.

Aside: there is a link to have a personally autographed copy of Jenny McCarthy’s latest book sent out. I resisted the temptation to spend $99 to have a copy sent to CHOP with the inscription, “Paul Offit! You Rock!”

See, I should leave the insolence to the pros.

So, back to the story, I saw an interesting link on the Generation Rescue main page recently:

Concerned your child might have autism? Take our survey

Click the link and you get to a survey:

CARD Autism Symptoms Questionaire (ASQ – BETA) powered by: Generation Rescue

CARD being the “Center for Autism and Related Disorders”. They are an ABA group, headed by Doreen Granpeesheh, who also works at Thoughtful House (Andrew Wakefield’s clinic).

OK, I passed on the signed book, but I couldn’t resist the free survey.

I took the survey. I used information from a child I know very well; a child who is definitely not on the spectrum. Five minutes later I was surprised to find out that “A diagnosis of Pervasive Development Disorder Not Otherwise Specified (PDD-NOS, a mild version of autism) appears to be indicated.”

It wasn’t even close, according to the CARD/GR website.  Here are the results. The blue bar shows the results for the kid.  That bar is almost 6 times higher than the cutoff for PDD-NOS.  It’s also wider, what does that mean?

CARD/GR survey results (for non ASD kid)

CARD/GR survey results (for non ASD kid)


A little internet searching and I found this disclaimer for the survey in a Generation Rescue email: “This is not a substitute for a formal diagnosis by a professional, but it is a free and accurate way of determining if a diagnosis is likely.”

Accurate?  A non ASD kid is shown to to be well into the PDD-NOS range, and that’s accurate?

That was just one kid, and perhaps PDD-NOS is “mild” enough to be a common “misdiagnosis” of the survey. A friend of mine took the survey too, again using information from a real, non ASD kid.  The results?  Autism is indicated. Not PDD-NOS, but Autism.

At least the survey results included a link to the Generation Rescue guide to recovery.  With luck, and a lot of supplements, chelation, saunas, HBOT, we might just be able to recover these (non ASD) kids.

Maybe I can enter the recovery stories on the GR website to inspire others.

The reality of the situation is that this is no joking matter.  One major problem the California Department of Developmental Services ran into in recent years was early intervention groups who were both diagnosing and treating young “autistic” kids.  Funny thing, for some of the groups, none of the kids were eligible for services beyond age 3.

California is seeing big budget cuts to the Department of Developmental Services.  There is a very real possibility that groups are using inaccurate testing techniques to “diagnose” kids with ASD’s and then doing tens of thousands of dollars in possibly unwarranted therapies.   We just don’t have the money to throw away like that.  We never did.

More non-autism blogs critical of the vaccine-autism story

23 Jul

There is a substantial public relations push to get the vaccines-cause-autism idea in front of the public’s eye. High end, expensive PR firms have been hired, and, let’s face it, they got a big free boost from Jenny McCarthy and Oprah.

The cost to public health is obvious. Declining vaccination rates have already had a big impact in the UK, and the US has also seen a resurgence of measles and other diseases.

But, there is another cost. As noted recently on this blog, Jenny McCarthy has already become the butt of comic strip jokes for her position on vaccines. Many people are likely to not realize that Jenny McCarthy speaks for a minority (loud though they may be) of the autism community. My kid relies on on the public’s perception of “the autism community”. When people like Ms. McCarthy damage that perception, there is a very real cost to my kid, my family.

It isn’t new for bloggers outside of autism to be critical of Jenny McCarthy and others in the vaccines-cause-autism groups. Most notably, Orac has taken Ms. McCarthy to task a number of times in what is one of the most well read medical blogs, “Respectful Insolence“. Likewise, Science Based Medicine has had a number of bloggers take on the pseudoscience and dangerous opinions of the vaccines-cause-autism crowd. But, one could argue that they are medical blogs and, thus, more connected to vaccines, public health and autism than your general blogger.

But, the past week has seen a couple more prominent blogs

Discover Magazine’s Bad Astronomy has come out against the dangerous pseudoscience with Jenny McCarthy: spreading more dangerous misinformation. If the title isn’t clear enough, here’s the first paragraph:

If you haven’t had your quota of shockingly wrong medical advice for the year yet, try watching this video by Dr. Jenny McCarthy, as she manages to squeeze about a metric ton of misinformation into a two-ounce package.

Note: “try watching this video” is a link in the Bad Astronomy blog piece. A link to the video hosted by Generation Rescue. For some reason (bad publicity? Too much bandwidth?) GR has pulled the video from their site.

While I cringe at yet more damage to the public perception of the “autism community”, I applaud Bad Astronomy for taking on Ms. McCarthy. It isn’t Bad Astronomy’s fault if “the community” looks bad. It is squarely at the feet of Jenny McCarthy.

Interestingly, Mr. Kent Heckenlively of the “Age of Autism” blog decided to comment at Bad Astronomy. Even more interesting, Mr. Heckenlively was forced to retreat to his own blog to continue the discussion where his claims wouldn’t be exposed to actual criticism.

But, once again, one could say it is expected that a science blog like Bad Astronomy would take on Jenny McCarthy. The do-vaccines-cause-autism question is a science question after all.

Enter Mother Jones. MJ blogger Sonja Sharp posted, Breaking: Vaccines Still Don’t Cause Autism.

Mother Jones is not a science or medicine based publication. In fact, as Ms. Sharp states:

We love a good conspiracy as much as the next investigative magazine—especially one that involves Big Pharma, the FDA, and the CDC. But as we’ve extensively reported here, the vaccines = autism meme might just be the most damaging medical myth of the decade. Not only is it based on false “science” that’s tearing apart the families of sick children, it’s unintentionally sickening thousands of others.

While the vaccine/autism story isn’t completely new to Mother Jones (for example, see Arthur Allen’s piece, Vaccine Skeptics vs. Your Kids)), Jenny McCarthy et al. should take a big hint when they can’t even get sympathy from MJ.

This blog piece obviously hit a nerve. Take a look at the comments. Second comment: David Kirby. David Kirby is, for better or worse, one of the most read bloggers talking about autism. I can already feel the heat from those who will (with good cause) tell me that David Kirby doesn’t really talk about autism. Point well taken. That said, Mr. Kirby doesn’t even participate in the comments of his own blog. Why suddenly break the tradition with Mother Jones?

I expect Mr. Kirby to actually partake in the discussion beyond his one comment. I may be forced to take a page from Mr. Heckenlively’s book and take the conversation here.

Jenny McCarthy: making autism advocates the butt of comics

18 Jul

There are many reasons I have for being vocal about my objections to Jenny McCarthy. Public health, that’s obviously a big one. Making the rest of the world look at the “autism community” as a bit of a joke, well that’s another.

With a hat-tip to Brian Steinberg of Examiner.com, cue the comic strip “Soup to Nutz”.

Soup To Nutz

It isn’t like they don’t know who is most responsible for giving Jenny her platform either:

Soup To Nutz

Mr. Steinberg closes his post so well I just have to quote it as my closing:

Look, it’s one thing to make fun of the president or a prominent politician, or even make reference to a big-name movie star or starlet. But it’s quite another to take on a celebrity with a pet cause or peeve. Mr. Stromoski is on firm ground taking on Ms. McCarthy’s credentials. I just wonder if her fans will treat him courteously.

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