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Faux advocates embarrass the autism communities by attacking high school students and their film project

12 May

Not all advocates in any given community will push for the same thing. That’s a given. But within the autism communities we have groups who pretend to speak for all of us and who have been throwing their efforts away for well over a decade. I’m speaking of course about those fixated on vaccines. Not even vaccines as a hypothetical risk factor for autism, but vaccines in general. Attacking vaccines and spreading misinformation about vaccines has nothing to do with autism. Now we can add: attacking high school film makers has nothing to do with autism advocacy.

Emily Willingham covers this well at Forbes.com: High School Students Under Attack For Vaccine Documentary. Shot of Prevention also talks about it at Invisible Threat Filmmaker Discusses Journalistic Integrity and Respectful Insolence as Antivaccine activists bully high school filmmakers over a student documentary about vaccines (plus more).

In short, a group of high school students have a film called “Invisible Threat”. The students are from Carlsbad High School Television. Here’s the trailer:

Invisible Threat Trailer from CHSTV Videos on Vimeo.

Unfortunately for the faux autism advocates (and others who attack vaccines) “Invisble Threat” is getting a lot of visibility for a student film. From Shot of Prevention: The Invisible Threat Is Coming to Our Nation’s Capitol.

On May 1st at 10am, Every Child By Two and the Immunization Coalition of Washington, DC will host a special event which will serve as the official nationwide launch of the Invisible Threat movement. Since it is critically important for our elected officials to get the strong message that the public expects sensible, science-driven legislation when it comes to vaccines, we’ve invited them as our special guests. Now we are counting on you (and your friends, family and colleagues) to call, or email, your members of Congress this week to further encourage their attendance at the U.S. Capitol Visitor Center.

By flooding their offices with calls and emails between now and May 1st we can make it clear that pro-vaccine constituents have a voice, and that we stand firm against vaccine misinformation that is resulting in weakened public health policies, watered-down school vaccination requirements and the resurgence of deadly diseases!

Yes, legislators were invited to a screening of the film. A film which presents vaccines as life-saving and effective. But this is branded as “propaganda”. If you read the criticisms (say here and here) you see that apparently it’s inconceivable to these faux advocates that high school students could come to the conclusion that vaccines work. Instead this must be part of the entire imagined network of conspiracies that are behind vaccines.

Over the years I’ve come to believe that improbable as these conspiracy theories are, these people actually do believe them. (When someone sends you an email saying, in effect, “let me bully you or I’ll write an article that shows I’ll believe pretty much anything” and then does write that article, you have to accept that they believe what they write). So while their arguments are filled with misinformation, they may not be technically lies. But when they bully and harass, and bully and harass high school students, that’s something even they should know crosses the line. From Invisible Threat Filmmaker Discusses Journalistic Integrity:

“Almost three years ago an article in our tiny local newspaper mentioned our broadcast journalism club, Carlsbad High School TV (CHSTV) Films, was going to make a video clip about the immune system including how vaccines work. We hadn’t even started filming, yet the blogs prompted hundreds of ugly comments and calls. Yes, the anti-vaccine bloggers were harshly criticizing high school students doing an after school project sponsored by an unrestricted local Rotary grant.

Not knowing anything about vaccines, I thought there must be something shocking we were about to uncover about children being harmed and possible cover up. Now that was worth researching. However, the adult supervisors at CHSTV Films – the director (our broadcasting teacher) and the volunteer (PTA mom turned producer) – had a different reaction. They pulled the plug on the project, citing a concern for us teens after all the angry comments flooded in. They had no idea that this topic was so explosive. Due to the success of our previous films, we had other projects being pitched to us and the adults felt it best to avoid this headache.

Yep, they got attacked from the beginning. From Stop the Fear-Based Propaganda About Vaccines

According to Lisa Posard, a teacher at Carlsbad and producer of the film, once the anti-vaccine community got wind of the production through a small news article in a local paper, the threats and emails started and almost stalled their production. At a media call for the film, she confirmed that after the resistance they received from white-supremacists over their holocaust documentary, they considered abandoning the vaccine documentary all together.

The students pushed back, however, and would not give up their investigation. They have since produced a film that has been lauded by the Centre for Disease Control in Atlanta, Every Child by Two and the Children’s Hospital of Philadelphia. The film has become a standard educational tool at hundreds of health-care sites across the US and they are currently searching for a producer to release it commercially. These students will not give up.

And it continues.

It’s one thing to protest something, even when you are wrong. That I support. It’s another to threaten high school kids. When your tactics are being compared to those of white supremacists, you are causing harm. You are causing harm to the autism communities, to public health and more.

Let me put it simply. I stand apart from you. As a citizen, I stand apart from you. As someone interested in public health, I stand apart from you. As a parent, I stand apart from you. As the parent of an autistic child, I stand apart from you.

And I am far from alone. You think you are the leading edge fringe: those with vision. But you are just a garden variety fringe. Causing harm and making it hard for those of us who want a better future to accomplish our goals.

—
By Matt Carey

Eradicate Microglia to treat autism? No. No and No.

12 May

Long ago I gave up on countering the misinformation that comes from the blog “The Age of Autism”. Not that there’s no value to it, but there is greater value for me in other tasks. Once in a while something that comes up that just needs to be taken on. In this case an article: Will Eradicating Microglia and Stopping Neuroinflammation Help in Autism?

Let me get to the conclusion quickly: No. Eradicating a whole class of cells in the brain is a bad idea. Not just because such a statement is obvious, but because there are already cases of children being harmed by people “treating” glial cell activation (neuroinflammation).

To say it again, “eradicating” microglia is dangerous, would cause harm and is just an incredibly bad proposition.

Micrioglial activation in autistic brains was discovered by Carlos Pardo and his group at John’s Hopkins. The seminal paper, Vargas et al., Neuroglial activation and neuroinflammation in the brain of patients with autism, was published in 2005. The authors knew that the understanding was incomplete at the time and that there was a great potential for people to jump ahead to “treat” neuroinflammation based on this report so they put a FAQ online. In it they state:

If there is neuroinflammation in the brain of some autistic patients, is treatment with anti-inflammatory or immunomodulatory medications indicated?
At present, THERE IS NO indication for using anti-inflammatory medications in patients with autism. Immunomodulatory or anti-inflammatory medications such as steroids (e.g. prednisone or methylprednisolone), immunosupressants (e.g. Azathioprine, methotrexate, cyclophosphamide) or modulators of immune reactions (e.g. intravenous immunoglobulins, IVIG) WOULD NOT HAVE a significant effect on neuroglial activation because these drugs work mostly on adaptive immunity by reducing the production of immunoglobulins, decreasing the production of T cells and limiting the infiltration of inflammatory cells into areas of tissue injury. Our study demonstrated NO EVIDENCE at all for these types of immune reactions. There are ongoing experimental studies to examine the effect of drugs that limit the activation of microglia and astrocytes, but their use in humans must await further evidence of their efficacy and safety.

Since then the understanding of the role of microglia has broadened. It has been shown that microglia play a role in brain development. At an IACC meeting last year, Carlos Pardo commented:

And that is important to point out because it was believed that microglia may have been the bad actor of the immune system in the brain, and actually, in the past 3 or 4 years, we are learning more and more about the beneficial effect and the normal biological function that microglia have on synaptic plasticity and synaptic formation.

And I want to point out this issue because it’s extremely important for brain development and plasticity, that manipulating the immune system with medication probably is not the best avenue for management of autism.

It’s a very understated comment, but on that should be heeded. Dr. Pardo has continued to work on the area of neuroninflammation and autism, including this clinical trial of a treatment.

Sadly, this isn’t just countering a very bad hypothetical question posed by irresponsible people at the Age of Autism blog. As I’ve already noted, “treating” microglial activation has already caused harm. Also, there’s a group claiming that all autism is caused by microglial activation and that the treatment is to “inhibit” microglial activation. The group calls itself “stop calling it autism”.

Autism is caused by a medical illness in which the brain’s immune system (microglia) attacks the connections in the brain. This leads to developmental delays that can cause significant social, communication and behavioral problems.

Our approach to treat autism and enable recovery is to inhibit microglial activation, which from evidence is known to destroy brain connections affecting brain development and function.

We at SCIA have designed and published a treatment protocol centered on this

They list elsewhere on their site:

Treatments include:
1. Antiviral medications
2. Antifungal medications
3. Antibiotics
4. Medications and supplements to increase natural killer cell activity
5. Immunoglobulin Therapy
6. Medications to inhibit microglial activation and to reduce nitric oxide levels

That’s a nice “shotgun” approach to a topic they clearly don’t understand.

In addition to the above, I’ve seen individuals and groups promoting NSAID’s (Non-steroidal anti-inflammatory drug), steroids, ACTOS (a potent diabetes treatment that has been shown to increase cancer risk)

Dr. Pardo is giving a talk at IMFAR this week, the title of which seems very on-point: Immunological Disarrangements in ASD Are Associated with Biological Processes and Homeostatic Mechanisms in ASD Rather Than Autoimmunity or Pathogenic Inflammation. “rather than…pathogenic inflammation”. The abstract is still embargoed, but it seems like the understanding is indeed moving forward. But away from the understanding that the Age of Autsim blog and “Stop Calling It Autism” are espousing.

This is an area where people have jumped ahead of the understanding and harm is being done.
—
By Matt Carey

The largest autism science conference, IMFAR, starts this week

12 May

IMFAR, the International Meeting For Autism Research, is being held this week in Atlanta, Georgia. The schedule for the meeting is up, as is the list of talks (program). Abstracts are embargoed until Wednesday at 10am EST.

Here is a list of general topics for the conference:

Adult Outcome: Medical, Cognitive, Behavioral
Animal Models
Brain Function (fMRI, fcMRI, MRS, EEG, ERP, MEG)
Brain Structure (MRI, neuropathology)
Cognition: Attention, Learning, Memory
Communication and Language
Early Development (< 48 months)
Epidemiology
Genetics
Intellectual and Behavioral Assessment and Measurement
Invited, Keynote Speakers, Awards
Medical and Psychiatric Co-morbidity
Molecular and Cellular Biology
Other
Repetitive Behaviors and Interests
Services
Social Cognition and Social Behavior
Special Interest Groups (SIGs)
Specific Interventions – Non-pharmacologic
Specific Interventions – Pharmacologic
Technology Demonstration

I, for one, am very glad to see a focus on adults (<a href=”https://imfar.confex.com/imfar/2014/webprogram/Session3075.html“>three sessions) and on services (three sessions).

There is a session on Autism in Africa. There is very little information on this area.

There is a dearth of autism research on the African continent; this scientific panel session aims to highlight recent research progress addressing this gap. The panel includes scientific presentations from two sub-Saharan African countries, using a combination of qualitative and quantitative methodologies and reporting on both urban and rural African populations. Altogether, the findings from these studies highlight the major barriers to appropriate support for families of children with autism in Africa (including the severe shortage of diagnostic and educational services, lack of awareness about autism and its causes, and high levels of stigma), and report on a promising scalable model that can help tackle these problems by training frontline community-based health extension workers. The challenges and opportunities discussed in these presentations apply not just to the countries under study, but have relevance for the entire African continent and low/middle income countries elsewhere. During the panel discussion these common themes will be reviewed and priority areas for future research and opportunities for intervention will be highlighted, in order to facilitate future autism research, advocacy and capacity building efforts.

I was able to attend IMFAR in San Diego a few years ago with the aid of an Autism Science Foundation grant. It was a great experience and I wish I could attend this year. There is nothing like it for concentrated autism science.

—
By Matt Carey

On Andrew Wakefield and the use of the term “fraud” in the press

6 May

Andrew Wakefield has sent a threatening letter to Forbes and Emily Willingham claiming harm over their use of the word “fraud” in a recent article. I wrote about this recently but then thought, “I wonder how often the term ‘fraud’ shows up in the press. Here are some examples from a recent Google News search.

Vail Daily column: Vaccine: Not a 4-letter word

But before I continue, realize that a few years later Wakefield was found guilty of falsifying data in order to fit a desired conclusion and was stripped of his license to practice medicine. The hypothesis that MMR caused autism was declared fraudulent, and Wakefield is now living in Texas pushing homeopathic medicine (read: watered-down to the point it needs no FDA approval) to the gullible.

STONE: Vaccines save lives

First, let’s put to bed one of the more outlandish conspiracy theories brought on by the anti-vaccine movements that vaccines cause autism. Jenny McCarthy, fueled by a biased and fraudulent study in 1998 by Dr. Andrew Wakefield claiming autism was linked to the combined measles, mumps, rubella (MMR) vaccine, used her celebrity stature to “raise awareness” for parents to reconsider vaccines for their children.


LETHBRIDGE: The victory of reason over my vaccination fears

In retrospect, it was the correct decision. Wakefield’s work was later found to be fraudulent. His research practices were ethically dubious, he falsified data and failed to declare certain vested interests.

The vaccine and its controversy

The MMR vaccine became the centre of a controversy following claims (which were subsequently established as fraudulent) that the vaccine was responsible for causing Autism-spectrum disorders in children. The controversy was kicked off in 1998 by the publication of a paper by British surgeon Andrew Wakefield in the medical journal The Lancet. Investigations later revealed that Wakefield had multiple undeclared conflicts of interest, had manipulated evidence, and had broken other ethical codes. The Lancet paper was partially retracted in 2004 and fully retracted in 2010, and Wakefield was found guilty by the General Medical Council of serious professional misconduct in May 2010 and was struck off the Medical Register.

Collin Boots | Immune to reason
The Devil’s Advocate | The anti-vaccine movement, whether religious or secular, needs a dose of reality

Not only have countless follow-up studies directly contradicted this result, but The Lancet actually retracted the original article in 2010 when it was revealed to be fraudulent. Wakefield was also stripped of his medical license

Richard Feldman: Vaccines and autism: Numerous studies indicate no connection

British researcher Dr. Andrew Wakefield authored completely bogus research in 1998 that linked the measles-mumps-rubella vaccine to autism. His fraudulent research was finally exposed; he was completely discredited and lost his British medical license.

Don’t let parents opt out of ‘mandatory’ vaccinations

In 2011, the British Medical Journal published an investigative piece by Sunday Times reporter Brian Deer, debunking Dr. Andrew Wakefield’s vaccine/autism study as “an elaborate fraud.”

Only 12 children were studied. Doubts were raised about the manner in which they were recruited and the science with which the study was conducted.

As well, it was discovered Wakefield was on the payroll of a group that had launched a lawsuit against manufacturers of the MMR vaccine — and their claim would be based on his evidence.

What’s most shocking about this is that well-meaning, concerned parents around the world stopped vaccinating their children on the basis of this fraudulent study and Wakefield became the darling of the anti-vaccine activists movement.

Even though it’s been shown to be a giant fraud, there are those who still persist in parroting the untruths.

EDITORIAL: Vaccinate your children

Reasons vary. Some parents prefer a “natural immunity” to vaccine-acquired immunity; others believe vaccines overload a child’s immune system; others say we shouldn’t worry about diseases that have “disappeared.” Then there’s the Jenny McCarthy phenomenon. The former Playboy model has convinced some parents that vaccines cause autism. The one study that linked the measles-mumps-rubella vaccine to autism, by British doctor Andrew Wakefield in 1998, has been discredited as fraudulent, and the published paper was retracted. Autism rates are the same in vaccinated and unvaccinated children.

My position on immunization – Dr. Mark Fishaut

Editors of BMJ, the British medical journal, have even called the study “an elaborate fraud,” accusing author Andrew Wakefield of deliberately falsifying medical data.

Prevention is better than cure

It was also reported that his research methodology was questionable as patient data was manipulated to create the appearance of a link to autism. This conflict of interest plus the fraudulent research resulted in the withdrawal of Wakefield’s paper from The Lancet and revocation of his medical licence.

That’s, what, 10 examples in only the past few weeks?

None have any notation that Mr. Wakefield has contacted them. I have not heard of any such letters being sent other than the one to Forbes and the lawsuit instigated against Brian Deer and the BMJ.

Odd, isn’t it, that all of a sudden Mr. Wakefield decides to threaten one of the Age of Autism’s favorite targets and no one else?

—
By Matt Carey

Comment on: What should autism research focus upon? Community views and priorities from the United Kingdom.

6 May

A paper came out in the past few days: What should autism research focus upon? Community views and priorities from the United Kingdom. I haven’t seen the whole paper but here’s the abstract:

The rise in the measured prevalence of autism has been accompanied by much new research and research investment internationally. This study sought to establish whether the pattern of current UK autism research funding maps on to the concerns of the autism community. Interviews and focus groups were conducted with autistic adults, family members, practitioners and researchers to identify their priorities for research. We also captured the views of a large number of stakeholders via an online survey. There was a clear disparity between the United Kingdom’s pattern of funding for autism research and the priorities articulated by the majority of participants. There was general consensus that future priorities for autism research should lie in those areas that make a difference to people’s day-to-day lives. There needs to be greater involvement of the autism community both in priority setting and in research more broadly to ensure that resources reach where they are most needed and can make the most impact.

My comment is simple: Yes. Yes. And yes:

1) There was a clear disparity between the United Kingdom’s pattern of funding for autism research and the priorities articulated by the majority of participants.
2) There was general consensus that future priorities for autism research should lie in those areas that make a difference to people’s day-to-day lives.
3) There needs to be greater involvement of the autism community both in priority setting and in research more broadly to ensure that resources reach where they are most needed and can make the most impact.

—
By Matt Carey

Andrew Wakefield threatens another libel suit

6 May

One of the advantages of taking some time off writing and the internet autism discussions is not hearing about Andrew Wakefield. Otherwise it seems a day can’t go by without some news article or blog post going up where the same 4-5 people will descend and tell us, once again, about how Andrew Wakefield isn’t an unethical guy but a combination of Nelson Mandela and Jesus Christ rolled up into one.

If you don’t recall and think I’ve gone way over the top with that phrase: it’s a quote. Yeah, really. J.B Handley, co-founder of Generation Rescue actually said that to a reporter at the New York Times for his article The Crash and Burn of an Autism Guru.

A decade ago Brian Deer exposed the first of the ethical lapses to come to light involving the MMR/Autism research Mr. Wakefield had undertaken. That’s when it became clear that Mr. Wakefield had financial conflicts of interest, hidden from the public and even his own colleagues. While this ground has been gone over many times in the past 10 years, it’s worth reading about it again if only to hear Mr. Wakefield’s colleague, Simon Murch, chime in on what it was like to discover that Mr. Wakefield had hidden financial interests:

Simon Murch, one of the leading doctors involved with Wakefield’s research at the Royal Free, said yesterday that news of the £55,000 legal funding was “a very unpleasant surprise”. “We didn’t know. We were pretty taken aback. The timing of it before the paper is something we have all been shocked by. If you have a colleague who has not told you, if you have not been informed you are going to be taken aback.”

He went on: “I am not going to join the queue of people rushing up to kick Andy. But it is right that this has come out: there has been a complete conflict of interest.”

Murch said it was never made clear that the payment was in place before the report was published. “We never knew anything about the £55,000 — he had his own separate research fund,” said Murch. “All of us were surprised . . . We are pretty angry.”

In response for his 2004 reporting of such stories, Mr. Deer was served with a lawsuit. A lawsuit that Mr. Wakefield eventually dropped, paying Mr. Deer’s legal fees. But before it was dropped, a judge made the following statements in a judgment and those comments are worth reading again (at least I think so):

It thus appears that the Claimant wishes to use the existence of the libel proceedings for public relations purposes, and to deter other critics, while at the same time isolating himself from the “downside” of such litigation, in having to answer a substantial defence of justification.

The Claimant in the above being Mr. Wakefield. Who appears to have been facing a rather strong rebuke for “us[ing] the existence of the libel proceedings for public relations purposes..” etc..

Before we get to the matter at hand, here’s one more paragraph of background. Readers of Left Brain Right Brain may be aware that Mr. Wakefield has again sued Mr. Deer, this time for articles which appeared in the BMJ. Mr. Wakefield lost the first round of this lawsuit against the BMJ and Brian Deer and is appealing (docket here). Mr. Wakefield took exception to his work being called fraudulent and himself being called a fraud. Well, he took exception to the word fraud in the BMJ and spoken by Mr. Deer, but as Todd W notes at Harpocratese Speaks, Mr. Wakefield has since let a lot of other mentions of the word “fraud” go by unchallenged. Most notably, to me, a Time magazine article: Great Science Frauds.

Mr. Wakefield has now taken offense at an article written by Emily Willingham, Ph.D., a researcher and science writer whose work appears, among other places, on Forbes.com. Emily Willingham wrote an article, Blame Wakefield For Missed Autism-Gut Connection in which she used the “f” word (fraud):

So why is it that no one attends to this clear (to me) link when it come to autistic children? Well, the Pediatrics review by McElhanon et al. happens to cite that reason several times: Wakefield’s MMR/autism/gut red herring and the subsequent noxious cloud that his fraud (link added 5/2/14) left over any research examining autism and the gut. So we don’t know anything about the real underlying causes of these digestive problems among autistic children. The Pediatrics authors state it unequivocally, as they have done before (link added 05/02/14):

It is clear that greater clinical and research scrutiny is needed to increase awareness on this topic and thus support development of the best standards of care. Previous controversy surrounding the MMR vaccine and proposed causal link between ASD and infection of the GI tract probably deterred investigators from dedicating resources to examine GI functioning in this population while fostering uncertainty in the ASD community regarding the validity of this line of inquiry.

Mr. Wakefield responded with a letter (linked at Forbes) in which he has informed Willingham and Forbes that while he isn’t bringing a suit forward now but he intends to bring suit. He also sent a copy of the letter sent to the Age of Autism blog which posted it.

Let’s go to the heart of Mr. Wakefield’s assertion, where he pulls a line out of the Forbes article and comes to a conclusion of malicious intent (he starts with a quote from the Forbes article):

Well, the Pediatrics review by McElhanon et al. happens to cite that reason several times: Wakefield’s MMR/autism/gut red herring and the subsequent noxious cloud that his fraud… The Pediatrics authors state it unequivocally:

On any ordinary reading, the intent of your statement is clear: to imply that the authors of the Pediatrics paper cite fraud on my part. What McElhanon et al actually say is substantially different from your false and defamatory allegation i.e.,

Well, I guess by Mr. Wakefield’s standards I did not give the article an “ordinary reading” as I did not see that purported intent. I stand apart from Mr. Wakefield on many standards. Why didn’t I make the association Mr. Wakefield claims?. Because I know without reading the Pediatrics article that no where in it does it have the phrase “noxious cloud that his fraud”. I know this because I read scientific journals, write for scientific journals, have edited an issue of a journal and more. Perhaps Mr. Wakefield missed the obvious conclusion that the phrase he focuses upon is clearly in Emily Willingham’s voice and that is obvious “on any ordinary reading”.

Mr. Wakefield asserts that the Forbes article was written “maliciously” and that “[Emily Willingham’s] defamatory statements about me will undoubtedly cause me to suffer significant personal and financial damage.” Now, I can’t speak for Emily Willingham, but I can speak for myself–when I write my opinions of Mr. Wakefield and his work, I don’t think about it in terms of causing him damage. Frankly, if forced to consider it, I’d guess that when I write I likely enhance his stature among his supporters and donors, by supporting the image of Mr. Wakefield as some wronged maverick with myself as cast in the role as part of the machine which is grinding him down.

When I saw that Mr. Wakefield had threatened Forbes and Emily Willingham I thought, has he never heard of the Streisand Effect? I mean, here was a blog post at Forbes that had a couple of thousand views and was quickly on its way to the archives. Then I thought, yep, I bet he has heard of the Streisand Effect. I wouldn’t be surprised if he’s counting on me and others writing about him. What was it that judge said 10 years ago in a different suit? It thus appears that the Claimant wishes to use the existence of the libel proceedings for public relations purposes. I could be wrong. Probably am. I can no more read minds than can Andrew Wakefield, who projects malicious intent where I see none.

Consider a very recent interview he gave for a podcast. He’s introduced as “one of those dudes… [who] won’t back down” who has been “through living hell”. That group, by the way, is helping raise money for Mr. Wakefield.

So, here I am, playing into the mythos that is Andrew Wakefield, a man bravely facing critics like me in order to do what he does best: listen to the mothers of autistic children with GI disease. Except when those mothers disagree with him, apparently. Oh, did you miss that? Emily Willingham *is* the mother of an autistic child. And *two* of her kids have dealt with GI diseases. It’s in the comments of the article on Forbes.

In case it is not clear in the above, this is far from a trivial matter. Threats of legal action are never minor. I recall when Kathleen Seidel (autism parent and writer) was subpoenaed by Cliff Shoemaker, a vaccine attorney (Mr. Shoemaker was sanctioned). I recall when J.B. Handley threatened Kev Leitch (disabled adult, father of an autistic child and founder of Left Brain Right Brain). Even when you know you are in the right, lawsuits create a lot of uncertainty and distress.

—
By Matt Carey

FDA: Beware of False or Misleading Claims for Treating Autism

2 May

The Food and Drug Administration (FDA) in the U.S. has issued a statement: Beware of False or Misleading Claims for Treating Autism.

The statement is copied below. I applaud the FDA for taking this move. At same time, while this statement is encouraging:

According to Gary Coody, R.Ph., FDA’s national health fraud coordinator, the agency has warned a number of companies that they are facing possible legal action if they continue to make false or misleading claims about products and therapies claiming to treat or cure autism

I’ve had difficulty finding the warning letters on the FDA website. Consider this, in 2010, the FDA issued a statement on MMS (‘Miracle’ Treatment Turns into Potent Bleach). Last year, they issued a statement on HBOT (Hyperbaric Oxygen Therapy: Don’t Be Misled. And, yet, these are still promoted. HBOT promotion appears to have peaked and chelation is nothing like it was a few years ago (a recent survey had fewer than 1% of families subjecting their children to chelation). It’s difficult to judge the actual popularity of MMS, but it is promoted year after year at the AutismOne conference (with the title this year “Healing Autism” and the claim that it has contributed to children losing their autism diagnosis. These would seem to be the type of specific claims that the FDA could act upon).

This said, the FDA has had some successes. As noted, chelation is down. My guess is this is largely due to the fact that thimerosal is out of vaccines and it’s extremely clear that thimerosal didn’t cause the upsurge in autism diagnoses seen in the US in the past few decades. The FDA put a stop to the marketing of a synthetic chemical (OSR #1) that was promoted as a “supplement” but was, in fact, an industrial chelating compound.

Here is the FDA statement:

April is National Autism Awareness Month, a fitting time to think about the growing need for concern and awareness about autism.
One thing that is important to know up front: There is no cure for autism. So, products or treatments claiming to “cure” autism do not work as claimed. The same is true of many products claiming to “treat” autism. Some may carry significant health risks.

The Food and Drug Administration (FDA) plays an important role in warning these companies against making false or misleading claims.

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About Autism
According to the Centers for Disease Control (CDC), about 1in 68 children has been identified with an autism spectrum disorder (ASD). ASDs are reported to occur in all racial, ethnic and socioeconomic groups, and are almost five times more common among boys (1 in 54) than among girls (1 in 252).
The National Institutes of Health (NIH) describe autistic children as having difficulties with social interaction, displaying problems with verbal and nonverbal communication, exhibiting repetitive behaviors and having narrow, obsessive interests. These behaviors can range in impact from mild to disabling.

“Autism varies widely in severity and symptoms,” says Amy Taylor, M.D., M.H.S., a pediatrician at FDA. “Existing autism therapies and interventions are designed to remedy specific symptoms and can bring about improvement,” she adds.

In addition, FDA has approved medications that can help some people manage related symptoms of ASD. For example, the FDA has approved the use of antipsychotics such as risperidone and aripripazole to treat children 5 or 6 years of age and older who have severe tantrums or aggression and self-injurious behavior. Before using any behavioral intervention or drug therapy (prescription or over-the-counter), check with your health care professional.

The Association for Science in Autism Treatment (ASAT), a not-for-profit organization of parents and professionals committed to improving the education, treatment, and care of people with autism, says that since autism was first identified, there has been a long history of failed treatments and fads.

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FDA Cracks Down on False Claims

According to Gary Coody, R.Ph., FDA’s national health fraud coordinator, the agency has warned a number of companies that they are facing possible legal action if they continue to make false or misleading claims about products and therapies claiming to treat or cure autism. Some of these so-called therapies carry significant health risks and include:

“Chelation Therapies.” These products claim to cleanse the body of toxic chemicals and heavy metals by binding to them and “removing” them from circulation. They come in a number of forms, including sprays, suppositories, capsules, liquid drops and clay baths. FDA-approved chelating agents are approved for specific uses, such as the treatment of lead poisoning and iron overload, and are available by prescription only. FDA-approved prescription chelation therapy products should only be used under medical supervision. Chelating important minerals needed by the body can lead to serious and life-threatening outcomes.

Hyperbaric Oxygen Therapy. This involves breathing oxygen in a pressurized chamber and has been cleared by FDA for certain medical uses, such as treating decompression sickness suffered by divers. It has not been cleared for autism, among other conditions.

Miracle Mineral Solution. Also known as Miracle Mineral Supplement and MMS, this product becomes a potent chemical that‘s used as bleach when mixed according to package directions. FDA has received reports of consumers who say they experienced nausea, severe vomiting and life-threatening low blood pressure after drinking the MMS and citrus juice mixture.
Detoxifying Clay Baths. Added to bath water, these products claim to draw out chemical toxins, pollutants and heavy metals from the body, falsely offering “dramatic improvement” for autism symptoms.

CocoKefir probiotics products. Product claims include being a “major key” to recovery from autism, but they are not proven safe and effective for this advertised use.

Coody offers some quick tips to help you identify false or misleading claims.
Be suspicious of products that claim to treat a wide range of diseases.
Personal testimonials are no substitute for scientific evidence.
Few diseases or conditions can be treated quickly, so be suspicious of any therapy claimed as a “quick fix.”

So-called “miracle cures,” which claim scientific breakthroughs and secret ingredients, may be a hoax.

The bottom line is this—if it’s an unproven or little known treatment, talk to your health care professional before buying or using these products.
This article appears on FDA’s Consumer Updates page, which features the latest on all FDA-regulated products.

April 25, 2014

The Korean Community Services, Autism Speaks, the University of Pennsylvania and the George Washington University partner to provide autism resources to Korean Americans

17 Apr

There are many groups in American where the autistics are under-diagnosed and underserved including many racial and ethnic minorities. A recent partnership (press release below) has been formed to address the issues of providing resources to the Korean American communities in the U.S..

We need more outreach such as this. More efforts to identify and serve all Americans with disabilities, including autism.

FOR IMMEDIATE RELEASE
THE KOREAN COMMUNITY SERVICES, AUTISM SPEAKS, THE UNIVERSITY OF PENNSYLVANIA AND THE GEORGE WASHINGTON UNIVERISTY PARTNER TO PROVIDE AUTISM RESOURCES TO KOREAN AMERICANS
Launch Autism Hotline for Concerned Families

FLUSHING, N.Y. (April 10, 2014) – The Korean Community Services of Metropolitan New York, Inc. (KCS), Autism Speaks, the world’s leading autism science and advocacy
organization, the Center for Mental Health Policy and Services Research at the Perelman School of Medicine at the University of Pennsylvania, and the George
Washington University, today announced the establishment of the KCS Kids’ Line. KCS Kids’ line is a hotline service that provides referrals, information, and support for families
in the Korean community who are concerned that their children may have an autism spectrum disorder (ASD).

KCS will hold a press conference today at 3:00 p.m. ET at the Korean Community Services of Metropolitan New York, 35-56 159th Street in Flushing, to introduce the new
KCS Kids’ Line program. In attendance will be New York State Assemblyman Ron Kim, the Community Advisory Board members of the Project and local early intervention
providers. A two-year study, the New York Korean City Community Autism Project, funded by Autism Speaks, identified many barriers to early detection and access to
services for Korean families of children with autism.

Kwang S. Kim, the President of KCS, said, “KCS Kids’ Line service aims to help family and caregivers promptly respond to development issues and autism-related signs they
find in their children and get them appropriate services as soon as possible. We learned that early intervention is very important for children with autism because it allows them
practice and learn social and communication skills so they could better adapt to the society. I would like to thank University of Pennsylvania and Autism Speaks for
supporting this project for Korean-American community and hope that this program will help a lot of Korean-American children and their families affected by autism.”

KCS Kids’ Line Service Overview
The Asian-American Federation Census Information Center reports that Koreans are the third largest Asian group in the New York City, with a current population of more
than 100,000. According to the NYC Department of Education, Asians comprise 16% of New York City students; among those diagnosed with autism only 8% are Asian. This
difference suggests substantial under-diagnosis of autism in the Korean community. A recent study on the prevalence of autism in South Korea found similar results, with twothirds
of those on the autism spectrum previously undiagnosed and receiving no specialized services.

Under-diagnosis of autism in the Korean community may be driven by lack of awareness, stigma, and lack of access to linguistically and culturally appropriate
services. Language is a significant barrier among Korean-Americans seeking services in New York.

The goals of the KCS Kids’ Line are to ensure Korean-American children with autism in the greater New York area receive timely and appropriate services, to provide better
support for parents and families of those on the spectrum, and to promote autism awareness and greater access to resources about ASD.

The KCS Kids’ Line will serve, but not be limited to, parents of children from birth to 3 years of age with concerns about autism or other developmental delays. These parents will be able to call, e-mail or walk in to receive information. Autism-specific toolkits and resources that have been translated into Korean will be available for parents at the
event and also online at Autism Speaks’ website: http://www.autismspeaks.org/korean. KCS will continue to build knowledge about autism and related services in the greater
New York City area and develop relationships with schools and community organizations to connect older children and their parents with resources they need.

KCS has partnered with Autism Speaks, the George Washington University and the University of Pennsylvania to prepare the KCS Kids’ Line service. Autism Speaks
supports KCS by sharing their toolkits and resources, providing KCS coordinators with relevant trainings, education, and guidance. George Washington University and the
University of Pennsylvania helped KCS base the structure and content of the call line on previous research findings, translated existing materials for families into Korean, and
provided general guidance on the implementation of the call line. The University of Pennsylvania will evaluate the Kids’ Line service to determine its effectiveness in
increasing the number of Korean children with suspected autism who are referred for evaluation and services.

About Autism
Autism is a general term used to describe a group of complex developmental brain disorders – autism spectrum disorders – caused by a combination of genes and
environmental influences. These disorders are characterized, in varying degrees, by communication difficulties, social and behavioral challenges, as well as repetitive behaviors. An estimated one in 68 children in the U.S. is on the autism spectrum.

About KCS
Korean Community Services of Metropolitan New York (KCS) was founded in 1973 as the first community-based service agency in the Korean community. KCS is a non-profit
organization supported by government agencies, foundations, corporations and concerned individuals. KCS serves primarily but not limited to the Asian-American
immigrant population within the greater New York area. KCS’ objectives are to develop and deliver a broad range of community services to meet the various needs of the
community. To achieve these objectives, KCS provides various professional community services within the areas of Aging, Community, Workforce Development, and Public Health.

About Autism Speaks
Autism Speaks is the world’s leading autism science and advocacy organization. It is dedicated to funding research into the causes, prevention, treatments and a cure for
autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. Autism Speaks was founded in
February 2005 by Suzanne and Bob Wright, the grandparents of a child with autism. Mr. Wright is the former vice chairman of General Electric and chief executive officer of
NBC and NBC Universal. Since its inception, Autism Speaks has committed nearly $200 million to research and developing innovative resources for families. Each year
Walk Now for Autism Speaks events are held in more than 100 cities across North America. On the global front, Autism Speaks has established partnerships in more than
40 countries on five continents to foster international research, services and awareness. To learn more about Autism Speaks, please visit AutismSpeaks.org.

#StopCombatingMe: A New PSA from ASAN

16 Apr

Below is an email message sent out by the Autistic Self Advocacy Network (ASAN)

The Autistic Self Advocacy Network is proud to release our newest advocacy PSA, #StopCombatingMe. Produced in collaboration with We Are St. Elmo’s Fire, #StopCombatingMe provides a powerful perspective on the deeply flawed Combating Autism Act and urges for badly needed reforms and action. You can watch the PSA here.

ASAN is working to try and reform CAA to align its goals with those of the Autistic community: self-determination, community integration, acceptance, and meaningful advocacy. Unfortunately, the usual suspects are lobbying intensely, urging Congress to re-authorize the Combating Autism Act at all costs, even if changes aren’t made to fix the problems hurting self-advocates and our families. In fact, these groups are lobbying to make additional catastrophic changes which would wall the Autistic community off from the protections currently serving the rest of the disability community.

Congress has heard from us over and over again on why this proposed legislation will hurt our community. If we want them to listen, they need to hear from you.

1) Sign our action alert to contact your Members of Congress and ask them to support reforming the Combating Autism Act to make it about supporting autistic people, not “combating” us. Share our action alert with your friends, family and networks to help us get this message out far and wide.

2) Share our PSA and action alert with your friends, families, and networks. Post on social media about why you believe CAA has to be reformed using the hashtag #StopCombatingMe. Tweet our video to your Members of Congress, and post it to their pages with a note to let them know why fixing the Combating Autism Act is so important.

3) Schedule an appointment with your Member of Congress’ District Office. Every Congressperson keeps offices in their home district as well as in DC; constituents can make appointments to visit these offices and express concerns. In-person meetings, even with Congressional staff, are the most effective means of creating real change in legislation. You can use our fact sheet and memo on CAA Re-authorization to guide your advocacy, and share our joint letter from the disability community. Find the district offices nearest to you here. If you have any questions or need help arranging a meeting, ASAN’S Director of Public Policy, Samantha Crane, can be reached at Scrane@autisticadvocacy.org

With the re-authorization bill set to be introduced within the next few weeks, it’s critical that your Members of Congress hear from you now. Tell Congress that it is past time to Stop Combating Autistic People.

Nothing About Us, Without Us!

Jenny McCarthy tries to position herself as in the “grey area” on vaccines

16 Apr

Jenny McCarthy seems a bit angry at bloggers. She’s written an op-ed for the Chicago Sun Times Jenny McCarthy: The gray area on vaccines. She’s not antivaccine, she wants us to know.

Well, Jenny, I don’t call you antivaccine. I call you irresponsible. And I stand by that. Mostly for your promotion of autism “therapies” which range from useless to abusive. Will you be speaking at the AutismOne conference this year? If so, will you speak out on forcing disabled children to drink diluted bleach solutions or undergo repeated diluted bleach solution enemas? Really, it’s time to grow a spine and stop lending your name to nonsense.

Back to vaccines, here’s what you say now:

For my child, I asked for a schedule that would allow one shot per visit instead of the multiple shots they were and still are giving infants.

But only a few short years ago you told us you wouldn’t vaccinate if you had another child. A very different statement. What are young parents supposed to listen to? “I’m pro vaccine” or “I wouldn’t vaccinate my child”.

Irresponsible.

You hide behind straw-man arguments, even now:

I believe in the importance of a vaccine program and I believe parents have the right to choose one poke per visit. I’ve never told anyone to not vaccinate. Should a child with the flu receive six vaccines in one doctor visit? Should a child with a compromised immune system be treated the same way as a robust, healthy child? Shouldn’t a child with a family history of vaccine reactions have a different plan? Or at least the right to ask questions?

Parents have the right to pick their schedule. You know that. You said that in your “Green Our Vaccines” rally (3:20). The schedule is “recommended”. Children need to be vaccinated to attend school, but no one checks when they got their vaccines. Why do children need to be vaccinated? Well, for one thing, those children with compromised immune systems you talk about. They are at high risk for infectious diseases. They are not treated the same as other children, either by their pediatricians (yes, I’m calling you out on a straw man there) nor in school, where we are expected to help protect them.

Here’s what I call irresponsible: scaring people about vaccines with your ill founded opinions. Telling people that you wouldn’t vaccinate your baby, but claiming to be “pro vaccine”.

KING: Jenny, will you agree that some cases have nothing to do with vaccines, which makes it more puzzling?

MCCARTHY: Absolutely. You know, environmental toxins play a role. Viruses play a role. Those are all triggers. But vaccines play the largest role right now and something needs to be done. You know, testing these kids for immune issues, you know, that would help so much, changing the schedule. You know, I don’t understand — as a precautionary measure, why don’t they do this?

So, vaccines play the largest role right now? Based on what data? I’ve seen your “studies” and they are junk. Do you still believe that “vaccines play the largest role”? The evidence is even more against you now. You had a chance to clarify your position on autism and vaccines in your op-ed and you avoided it.

Here are more scary statements, without evidence:

But I believe that’s — it’s an infection and/or toxins and/or funguses on top of vaccines that push children into this neurological downslide which we call autism.

Here you are with Mr. Carrey:

MCCARTHY: Go back to 1989 schedule when shots were only 10 and the MMR was on that list. I don’t know what happened in 1990, there was no plague that was killing children that we had to triple the amount of vaccines.

CARREY: What happened back in 1989 that warranted 26 more vaccines?

MCCARTHY: Greed.

CARREY: Are all of them absolutely necessary?

KING: Because they want to make money?

MCCARTHY: Of course.

Vaccines are only necessary because people want to make money. That’s “pro vaccine”? More to the point, that’s responsible? Sure, let’s go back to the time when Hib infections caused lasting harm or even death. Let’s go back to the 1980’s. The vaccine is just there to feed greed, right?

Irresponsible.

I can go on and on with various irresponsible quotes of yours. Again, your statement that you would not vaccinate if you had another child is probably the most irresponsible when it comes to vaccines. Here’s what the founder of your autism organization had to say about his team’s efforts:

With less than a half-dozen full-time activists, annual budgets of six figures or less, and umpteen thousand courageous, undaunted, and selfless volunteer parents, our community, held together with duct tape and bailing wire, is in the early to middle stages of bringing the U.S. vaccine program to its knees.

You once shouted down someone saying that vaccines were beneficial, shouting “bullshit” on Larry King live. When you have the guts to distance yourself from the above statement, perhaps I’ll agree that you have guts. That you mean what you say. For now, it’s just Jenny McCarthy, putting her name in the press, yet again. Jenny McCarthy, selectively quoting herself to make herself seem responsible.

—
By Matt Carey

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