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Autism Science Foundation “Recipe4Hope” Campaign Will Raise Funds for Pre- and Post-Doctoral Autism Research Fellowships

1 Dec

The Autism Science Foundation (ASF) has a fundraiser campaign starting today: Recipe4Hope. This is collecting money for the pre- and post-doctoral fellowships that ASF funds. (Note, those looking to apply for the grants can find information here). You can find out what sort of research these grants fund by checking the ASF website, here.

Here is their promotional video:

Here is the press release:

Autism Science Foundation “Recipe4Hope” Campaign Will Raise Funds for Pre- and Post-Doctoral
Autism Research Fellowships

New York, NY — [December 1, 2011] —The Autism Science Foundation today announced the launch of its special year-end fundraising campaign “Recipe4Hope” – www.recipe4hope.org. Every dollar donated to the campaign will go directly to fund pre- and post-doctoral autism research fellowships to expand our understanding about what causes autism and to develop better treatments.

“We know that autism research takes a lot of people, working together, to find the answers,” said Alison Singer, president of the Autism Science Foundation. “We need the discoveries of the brightest scientists. We need the knowledge and experience of parents. We need donations to fund this critical research. All these efforts snowball into lasting hope for children, teens and adults.”

The centerpiece of the campaign is a short video – Youtube.com/user/AutismScienceFdn – showcasing the Neiman family of Colorado building a snowman and playing together in the snow. This video illustrates the point that just like building a snowman, it takes all of us working together to fund critically needed autism research.

“I love playing in the snow with my family,” said mom Laura Neiman, whose son has autism. “I’m so thankful that my family was a part of this video. I hope that our participation will inspire others to give to this worthy cause.”

This fundraising campaign will take place exclusively online through December 31, and will employ social media outreach to connect with donors and supporters. Supporters are encouraged to share photos of snow angels and other outdoor activities on the nonprofit’s Facebook page and Twitter account. There is also a hashtag, #recipe4hope, to track the activity on social media sites. Supporters can also set-up their own fundraising pages to raise donations for the nonprofit. It’s easy and free to set-up a personal page and give the gift of hope this holiday season.

The Autism Science Foundation has funded just under half a million dollars in pre- and post-doctoral student research in the past two years. Ongoing donor support for this program through the Recipe4Hope campaign is critical. ASF’s pre- and post-doctoral grant program encourages bright, energetic young scientists to devote their careers to autism research. These research grants are already having a real impact on the field.

For more information about the Recipe4Hope campaign visit Recipe4hope.org. Follow the Autism Science Foundation on Twitter.com/autismsciencefd and “Like” it on Facebook at Facebook.com/autismsciencefd.

About the Autism Science Foundation

The Autism Science Foundation (ASF) is a 501(c)(3) public charity. Its mission is to support autism research by providing funding and assistance to scientists and organizations conducting, facilitating, publishing, and disseminating autism science. The foundation also provides information about autism to the general public and increases awareness of autism spectrum disorders and the needs of individuals and families affected by autism. To learn more visit www.autismsciencefoundation.org.

Note: I was a stakeholder travel grant awardee from ASF for the 2011 IMFAR conference.

NVIC claims “intimidation” and “censorship” over Delta videos

16 Nov

The National Vaccine Information Center (NVIC) is angry with the American Academy of Pediatrics. It is very hard not to follow up a sentence like that with “so, what else is new?” The AAP promotes vaccines and vaccine safety. NVIC, not so much. What caused the present altercation? Both organizations were invited to place advertisements/information segments on Delta Airlines in flight entertainment for this month. After finding out that Delta would also host ads by NVIC, the AAP sent a letter to Delta.

In response, NVIC has issued a press release: “National Vaccine Information Center Calls Out AAP for Using Public Intimidation to Censor NVIC Flu Prevention Video Offered to Delta Travelers”

“Public Intimidation”? AAP sent a letter to Delta. That’s public intimidation? I (and others) obtained a copy of the letter and made it public. I guess that’s the “public” part. A weak argument. “Intimidation”? Sorry, just no evidence to support that word.

“Censor”? Strong words from Barbara Loe Fisher, who attempted to quash public discussion with her lawsuit against Paul Offit, Amy Wallace and Conde Nast. (a lawsuit she lost, just to remind you that free speech is still protected in the U.S.).

So, on the one hand we have NVIC and Barbara Loe Fisher who use lawsuits to try to change the public discourse, and the AAP who send letters on the other hand. And we are to believe it is the AAP who are promoting censorship?

Before we get to the NVIC press release, here is the letter that In Flight Media sent to organizations asking them to buy space for their “Lifestlye365-Cold, Flu, and Fall Allergy Season” series. Part of the offer by In Flight Media was the chance to advertise the organization.

Subject: IMA/Delta Air Lines Present “Lifestlye365-Cold, Flu, and Fall Allergy Season” Featuring [REDACTED]

Dear [REDACTED]

We would like to invite [REDACTED] to participate in our in-flight video series called Lifestyle 365, now airing on Delta Air Lines and Virgin America. We work with organizations around the globe creating in-flight video features that raise the profile on important topics affecting every ones lives. “Where you Live”…“How you Live”…and “What you Do”…it’s your Lifestyle 365.

For our November 2011 video segment we are producing a special health spotlight just in time for “Cold, Flu and Fall Allergy Season.” At a time of year when the weather is changing, kids are going back to school, and families are traveling for the holidays, it is important to raise awareness on the latest resources available for preventing and treating cold, flu and allergy symptoms. This is also a perfect time to remind our audience of the importance of adult and childhood vaccination by showing them when and where to go to get caught up on regular immunizations as well as this years’ flu vaccine. Why not take this opportunity to showcase your organization or product in front of millions of captive airline passengers!

We are proud to extend this opportunity to your organization and have attached additional details regarding pricing and exposure options for each airline. We are offering an exclusive 5-minute option for a rate of $49,500 (Standard is $75,000) with commitment by May 30, 2011.

Here’s a bit more on what you can expect by joining us in this program:

·Placement and production of content utilizing your raw footage within our Lifestyle365 program

·IMA to provide script, voice over and video production creative services at no additional charge, excluding all on- location shoot services.

·Delta Air Lines: Segment to air for a full calendar month on over 17,375 flights in front of an average of 2.5 million passengers

·Virgin America: Segment to air for 60 consecutive days, in front of 880,000 passengers on 7,500 flights

·Delta and Virgin America’s fleets are equipped with WIFI, passengers watching the program can log into your website right from their seat using their laptops or smart phones and instantly make a donation and learn more about your cause

·Show reference in Sky magazine and http://entertainment.delta.com/television/ (would link directly to your website).

·Your organization will maintain the rights to the completed piece to use in future marketing initiatives.

·Video placement on IMA’s YouTube channel, Facebook, and other social media sites

For more than a decade in the airline industry, In-Flight Media Associates (IMA) continues to bring the utmost level of innovation and creativity to organizations around the globe looking to reach the captive airline audience. With a core philosophy that entertainment attracts attention…advertising may not; they create and deliver messages that resonate with passengers in a non-intrusive way.

Our portfolio can be viewed at http://www.in-flightmedia.com. I will contact you in a few days to add more details, but please feel free to contact me at 760-944-6575, or via email at allison@in-flightmedia.com should you have any questions.

Thanks in advance for your consideration. We look forward to helping build Your Image in the Sky®.

Sincerely,

Let me draw your attention to two statements in the above:

“Why not take this opportunity to showcase your organization or product in front of millions of captive airline passengers!”

and

Delta and Virgin America’s fleets are equipped with WIFI, passengers watching the program can log into your website right from their seat using their laptops or smart phones and instantly make a donation and learn more about your cause

Clearly, a big piece of the motivation for organizations (NVIC included) to purchase time was to advertise themselves. NVIC acts as though the complaints (including mine) were not about this at all. How can I tell? Well, the NVIC has responded with a press release. A press release quite full of straw-man arguments:

WASHINGTON, Nov 15, 2011 (BUSINESS WIRE) — The non-profit National Vaccine Information Center (NVIC) is calling public pressure placed on Delta Air Lines by the American Academy of Pediatrics (AAP) to censor an NVIC video about flu prevention an “act of intimidation” to block public access to full and accurate health information about influenza.

NVIC was offered the opportunity to be a paid sponsor of a video about staying well during the flu season that would be included in Delta’s in-flight programming during November 2011. On Nov. 7, Forbes magazine published an article with a copy of a letter signed by the AAP President Robert Block, MD, accusing Delta of “putting children’s lives at risk” by showing travelers the NVIC sponsored video because it contains “harmful messages.”

In the AAP letter, the Pharma-funded medical trade association alleged that “The [NVIC] ad urges viewers to become informed about influenza and how to stay well during the flu season without resorting to the influenza vaccine.”

NVIC co-founder and president Barbara Loe Fisher responded, “Without cause, the AAP has used their considerable financial resources and political influence to intimidate Delta for simply showing a video that offers accurate information about ways to stay healthy during the flu season, including talking with doctors about getting a flu shot. Censorship and attacks on consumer advocacy groups working to institute informed consent protections in public health policies should not be tolerated in this or any society that cherishes free speech and the right to self determination.”

The AAP letter stated that “influenza vaccine continues to be the best way to protect against the disease,” without acknowledging that a recently published scientific study found that the flu vaccine is less than 70 percent effective in preventing influenza, which confirms previous studies questioning influenza vaccine efficacy and effectiveness. A top flu expert at the CDC has said that about 80 percent of flu-like illness reported in the U.S. every year is not influenza but is caused by other viruses and bacteria.

“The AAP’s leadership is clearly threatened by educated consumers, who have every right to engage in critical thinking when making choices about how to stay healthy,” said Fisher. “Why is the AAP so afraid to admit that washing our hands, covering our mouths when coughing, eating nutritious foods, getting enough sleep, exercising, and lowering stress are also important ways to stay well during the flu season and all year around?”

In the letter to Delta, the AAP alleged that NVIC “opposes the nation’s recommended childhood immunization schedule and promotes the unscientific practice of delaying or skipping vaccines altogether.” During NVIC’s three-decades of work to secure vaccine safety and informed consent protections in U.S. public health laws, NVIC has criticized one-size-fits-all vaccine mandates and advocated for more and better quality vaccine safety science but has not told individuals to use a particular vaccine schedule or told them not to get vaccinated.

“NVIC is a non-profit charity led by educated health care consumers. We are not doctors and do not tell people how or when to vaccinate or advise people not to vaccinate,” said NVIC’s Fisher. “We have a long public record of promoting well-informed, voluntary health care decision-making.”

This is the second time this year that the AAP has publicly attacked NVIC and taken action to censor information NVIC has made available to the public. In April, the AAP publicized a similar letter sent to CBS in an unsuccessful attempt to strong arm CBS into removing NVIC’s 15-second message shown on the Jumbotron in Times Square through the month of April.

Parent co-founders of NVIC worked with Congress on the National Childhood Vaccine Injury Act of 1986 and were responsible for securing historic informing, recording and reporting safety provisions in that law. The AAP and vaccine manufacturers lobbied Congress to secure a shield from civil liability for vaccine injuries and deaths in the 1986 law.

“Twenty five years ago, the AAP got liability protection for their pediatrician members, who are no longer accountable in a court of law when the liability-free vaccines they give ending up hurting a child,” said Fisher. “Almost immediately following the 1986 law’s passage, the AAP narrowed medical contraindications to vaccination so that, today, almost no child qualifies for a medical exemption to vaccination. Now, the powerful AAP is lobbying in states like California and Washington to strip parents of the legal right to exercise informed consent to medical risk taking for their children or file non-medical vaccine exemptions. This is becoming a civil and human rights issue involving censorship, inequality, discrimination and persecution of citizens by medical doctors wielding too much power.”

The National Vaccine Information Center (NVIC.org) is a 501C3 charity founded in 1982 by parents of vaccine injured children and is dedicated to preventing vaccine injuries and deaths through public education and protecting the informed consent ethic in medicine.

I will say I found this statement amusing: “Without cause, the AAP has used their considerable financial resources and political influence to intimidate Delta …”

Yes, the AAP used “considerable financial resources and political influence”. No ordinary organization could send a letter! Why, they used the United States Government in the form of the Postal Service to deliver their message. Would that I could tap into that sort of “political influence”.

Without cause? Perhaps NVIC could review the AAP letter, or the many complaints others have made about Delta’s decision to host the NVIC video.

Let me put it simply: Delta should consider seriously whether they wish to promote an organization like the NVIC. Playing these advertisements was clearly a promotion of the organization, as spelled out in the letter In Flight Media sent.

“Censorship and attacks on consumer advocacy groups working to institute informed consent protections in public health policies should not be tolerated in this or any society that cherishes free speech and the right to self determination”

I find it hard to give Ms. Fisher the moral high ground on free speech issues after she sued Paul Offit (and lost), Wired Magazine and Conde Nast.

That said, why do I think that Delta should reconsider supporting NVIC? How about the NVIC press release?

The AAP letter stated that “influenza vaccine continues to be the best way to protect against the disease,” without acknowledging that a recently published scientific study found that the flu vaccine is less than 70 percent effective in preventing influenza, which confirms previous studies questioning influenza vaccine efficacy and effectiveness. A top flu expert at the CDC has said that about 80 percent of flu-like illness reported in the U.S. every year is not influenza but is caused by other viruses and bacteria.

First off, notice how NVIC glossed over the statement by the AAP that “influenza vaccine continues to be the best way to protect against the disease”? They don’t come out and say AAP is right or wrong. What they do is follow it with nonsequiturs which downplay the need for the vaccine.

It’s pretty slick. They get to give the impression that the AAP is incorrect about the statement, and retain deniability.

NVIC: how about a simple statement. Is the flu vaccine the best way to protect against the disease or not?

On with the paragraph. NVIC pose that the 70% efficacy of the flu vaccine as a bad thing that is being kept hidden. Hey, I’d like a flu vaccine that was more than 70% effective, but, 70% is well worth it. 70% less chance of being sick with the flu? 70% less chance of passing the flu on to someone who is vulnerable to injury or death from the illness? I’d say “sign me up” except that I already got my shot this year.

That said, can NVIC offer an alternative which is proven better than 70%? Can they provide a method which is better than the combination of taking care of one’s self, attention to hygiene, plus the vaccine?

The second sentence in that paragraph is also troubling. “A top flu expert at the CDC has said that about 80 percent of flu-like illness reported in the U.S. every year is not influenza but is caused by other viruses and bacteria.” So? The statement was “influenza vaccine continues to be the best way to protect against the disease”, not “influenza vaccine continues to be the best way to protect against the disease and every other disease which is similar.”

This is exactly the sort of message I disagree with NVIC about. Downplaying the need for vaccines. Does NVIC say, “80% of flu-like illnesses might be caused by other disease–so, we should be looking for vaccines to protect against those viruses and bacteria as well”? Or, “Influenza vaccines might be only 70% effective, so we want research into a more effective vaccine”? Hardly.

NVIC claims that the AAP is “accusing Delta of “putting children’s lives at risk” by showing travelers the NVIC sponsored video because it contains “harmful messages.”

See how they want to ignore anything outside of their video? Let’s take a look at the paragraph with the “putting children’s lives at risk” phrase:

By providing advertising space to an organization like the NVIC, which opposes the nation’s recommended childhood immunization schedule and promotes the unscientific practice of delaying or skipping vaccines altogether, you are putting the lives of children at risk, leaving them unprotected from vaccine-preventable diseases.

AAP are objecting to promotion of the NVIC in general, not just the video. I guess NVIC didn’t want to address the question of whether they promote delaying or skipping vaccines, and whether this is unscientific.

NVIC tries to frame itself as a “vaccine safety” organization, asking only for “safer vaccines”. As I pointed out in an earlier post, they never define “safe”. They don’t seem to have called any vaccine “safe”.

Frankly, this looks like an effort for NVIC to try to get more publicity. In doing so, they are probably guaranteeing that Delta will not accept their advertisements in the future (or they have given up on any future spots) .This is a public relations nightmare for Delta. Last thing they want is a public debate about how they are contributing to a group who is putting children’s lives at risk. And, let’s face it, the American Academy of Pediatrics is well respected.

I’ll close by responding to a statement in the press release: “NVIC is a non-profit charity led by educated health care consumers’

Left Brain/Right Brain is also a group of educated health care consumers. Educated enough to reject the NVIC’s message. The real message, not the one they hide behind. The message of a group that thinks that vaccines are a “holocaust of poison“.

Happy Birthday ASAN

16 Nov

The Autistic Self Advocacy Network is celebrating it’s 5 year anniversary today. While it is too late to register for the event, below is the announcement they put out.

Please Join Us for
The Autistic Self Advocacy Network’s
5 Year Anniversary Celebration

Join us for a special celebration and fundraising event
The National Press Club in Washington, DC
Wednesday, Nov. 16, 2011
6:30 – 9:00 pm
—-
1st Annual Award for
Exceptional Services to the Autistic Community

Kathryn Bjornstad and Corina Becker
Creators of Autistics Speaking Day

Award given to those who have helped to build the Autistic community through exceptional advocacy, ingenuity or service.

with Special Guest Commissioner Sharon Lewis, ADD
Honoree: Ms. Nancy Thaler, Executive Director, NASDDDS
Keynote Speaker: Dr. Alexa Posny, Assistant Secretary, SERS
Special Announcement: Ms. Subha V. Barry, Senior VP, Freddie Mac

Cocktails, hor d’oeuvres and dessert will be served.
Proceeds will support our advocacy work and programs for the coming year and allow us to continue working to empower disabled people across the country.

ASAN is a 501(c)(3) organization – Ticket amount above $50 and additional donations are tax deductible to the fullest extent allowed by law.

http://www.autisticadvocacy.org

ASAN Symposium on Ethical, Legal and Social Implications of Autism Research

16 Nov

The Autistic Self Advocacy Network (ASAN) is co-hosting a symposium on Ethical Legal and Social Implications of autism research. I wish I was local and could go see this. You can register to attend here.

The Autistic Self Advocacy Network, in conjunction with the Petrie-Flom Center for Health Law Policy, Biotechnology and Bioethics, the Harvard Law Project on Disability and the UNESCO Bioethics Chair American Unit, is proud to invite you, to join us on December 10th for a Symposium on Ethical, Legal and Social Implications of Autism Research at Harvard Law School. The free event will run from 9 AM to 3 PM at the Harvard Law School campus, Hauser Hall, Room 105. Topics covered will include prenatal testing, community participation in research methodologies, appropriate and inappropriate intervention goals and much more.

This symposium will serve a unique role in shedding light on ethics and values issues within the autism research community. By bringing together self-advocate and researcher participants, we hope this will serve as a starting point for meaningful dialogue between those conducting research on autism and the community of Autistic adults and youth. Confirmed participants include Administration on Developmental Disabilities Commissioner Sharon Lewis, ASAN President and IACC Public Member Ari Ne’eman, National Institute on Child Health and Human Developmental Director Alan Guttmacher, Harvard Law Professor Michael Stein, Paula Durbin-Westby, Emily Titon, Liz Pellicano, David Rose and many more.

This event is open to the general public without charge and is made possible by a grant from the Administration on Developmental Disabilities.
Get more information
Register Now!
I can’t make it
Please join us as we begin this exciting conversation. Space is limited, so please RSVP soon.

Sincerely,

The Autistic Self Advocacy Network

Judge Rotenberg Center banned from shocking new admissions

14 Nov

The Judge Rotenberg Center (JRC) has is a special needs school in Massachusetts which employs electric shocks as part of its program on a subset of its students. This practice is controversial, to put it mildly.

With thanks to Kate Gladstone for bringing this to my attention, the JRC has been banned from including these aversives on future students.

The letter below is from the Autistic Self Advocacy Network (ASAN) Disability Rights International which goes into more detail.

JRC Banned from Shocking New Admissions

Dear Supporters,

This week we can celebrate a major victory against torture of people with disabilities in the United States. The Massachusetts Department of Developmental Services (DDS) adopted new regulations last week that greatly restrict the intentional use of pain as a form of treatment – including the use of electric shock, seclusion, and restraints on young children and adults with disabilities. As documented by a recent report by Disability Rights International (DRI), Torture Not Treatment, The Judge Rotenberg Center (JRC), based in Canton, Massachusetts, has used these practices, called “aversive treatment” for decades.

Facilities licensed by the DDS in Massachusetts can no longer subject new admissions to severe behavioral interventions including electric shock, long-term restraint, or aversives that pose risk for psychological harm — in other words, mainstays of JRC’s “treatment” program.US Report Cover

No other institution in the country – or the world, as far as we can tell – uses such barbaric practices. DRI’s investigation found that the pain caused by this is so severe and outside accepted professional norms, that these practices constitute nothing less than torture. By permitting such treatment, the United States violates its obligations under international law, as defined by the UN Convention Against Torture. DRI filed our report, Torture Not Treatment, in 2010 as an urgent appeal to the United Nations. The top official on torture at the United Nations agreed with DRI, and when asked by ABC Nightline if the practices were torture, he declared, “Yes…I have no doubts about it. It is inflicted in a situation where a victim is powerless…a child in the restraint chair, being then subjected to electric shocks, how more powerless can you be?”

We applaud Massachusetts Governor Deval Patrick on taking a courageous stand by issuing an executive order for the Massachusetts DDS to review their policies regarding electric shock and other severe aversives.

The resulting new policy puts an end to the use of JRC’s electric shocks on new admissions. But we can’t declare success yet. While hundreds of children will be spared from JRC’s behavioral experiments in the future, the new policies do not stop JRC from shocking and causing psychological damage to children already placed in the center. These children and young adults remain prisoners in a very dangerous environment. The center has been repeatedly investigated for suspicious deaths and physical abuse. JRC has been fined for identifying some clinicians hired by the school as psychologists, when in fact, they were not licensed psychologists. And as a result of an investigation into a case of abuse at the facility, JRC’s director was forced to resign earlier this year after being charged with misleading a grand jury about the investigation.

DRI is encouraged by the bold statement by the US National Council on Disabilities, a federal advisory body, which cited DRI’s report, as well as the international definition of torture, to call for the use of painful shock aversives to be brought to an end.

DRI urges the Department of Justice and the Obama Administration to fullfil its obgligations under the UN Convention Against Torture. DRI calls for a blanket ban on the use of electric shock as aversive treatment for children or adults with disabilities across the nation. There is nothing stopping JRC from shocking kids already in their center — or moving their facility to a different state to avoid the new Massachusetts regulations. The Department of Justice has an open investigation into the treatment of children at JRC. We ask you to write a personal appeal to the investigators to help ensure that this torture is put to an end once and for all, and is never allowed to be duplicated anywhere else in the United States.

We are one large step closer.

Thank you for your continued support,

Laurie Signature

Laurie Ahern,
President

Eric R Sig

Eric Rosenthal,
Executive Director

In which I agree with Barbara Loe Fisher…

12 Nov

The response to the decision by Delta Air Lines to air a commercial by the National Vaccine Information Center (NVIC) has been much larger than I would have predicted. Case in point, the Atlanta Journal Constitution has an article, Delta in-flight ad opposed; airline considers video change, discussing the reaction to the NVIC advertisement. This article notes:

Delta Air Lines will change its approval process for in-flight programming after a video advertisement drew opposition, leading to an online petition calling for its removal.

They note the online petition, “Tell Delta to Stop Putting their Passengers’ Health at Risk” (at over 2400 signatures so far).

The AJC also quotes Barbara Loe Fisher of NVIC:

“I don’t understand why there’s this controversy,” she said. “We need to be able to criticize organizations that we think could do a better job. … For the people who want to use vaccines, we are fighting for safer vaccine policies and safer vaccines. I don’t see what’s wrong with that.”

And this is where I agree with Ms. Fisher. We do need to be able to criticize organizations that we think could do a better job. She seems unaware that this is precisely what a number of us who are doing in discussing Delta’s decision to host this video. Criticizing NVIC, whom we feel could do a (much) better job.

I will note I find that quote very strange indeed. I wonder if she realizes the strawman argument she has created? People are not criticizing NVIC about “fighting for safer vaccine policies and safer vaccines.”

For example, I count myself amongst those who want to use vaccines. In that effortI do not want the sort of support that NVIC offers in working towards safer vaccines. For example, I don’t want the spread of misinformation about vaccine-induced epidemics of autism, which NVIC promotes. It is a message which has caused and continues to cause harm in the autism communities.

Oddly enough, in a quick search for “safer vaccine” on the NVIC.org website, I found no examples of a statement of the type, “this new vaccine is a safer vaccine” or anything which actually calls a vaccine “safer”.

There were only four hits for the phrase “safe vaccine” on the NVIC website. Those links are mostly to comments on blog posts. No statements by NVIC saying, “here is a safe vaccine” or “here is our definition of a safe vaccine”. The one hit for something actually posted by NVIC was from a testimonial, where safe was put in quotes: “…and the doctor suggested she have this “safe” vaccine…”

I am very interested in the continued effort to improve vaccines, including improving safety. I do not feel that NVIC represents my views in any way. I do not find their brand of “information” to be the sort I would recommend to anyone looking to educate themselves on vaccines.

I do agree with Ms. Fisher: we should be able to criticize those groups whom we feel could do better. Do better NVIC, or you will continue to be criticized.

A Parent’s Guide to Autism Spectrum Disorder

27 Oct

The National Institute of Mental Health in the U.S. has put out a short book (27 pages) to inform parents about Autism. A Parent’s Guide to Autism Spectrum Disorder can be read online, downloaded as a pdf or purchased as a hard-copy.

The book is broken down into chapters:

What is autism spectrum disorder (ASD)?

What are the symptoms of ASD?

How is ASD diagnosed?

What are some other conditions that children with ASD may have?


How is ASD treated?

How common is ASD?

What causes ASD?

What efforts are under way to improve the detection and treatment of ASD?

How can I help a child who has ASD?

For More Information on Autism Spectrum Disorder

Here’s an example–the first chapter “What is autism spectrum disorder (ASD)?”:

What is autism spectrum disorder (ASD)?

Autism is a group of developmental brain disorders, collectively called autism spectrum disorder (ASD). The term “spectrum” refers to the wide range of symptoms, skills, and levels of impairment, or disability, that children with ASD can have. Some children are mildly impaired by their symptoms, but others are severely disabled.

ASD is diagnosed according to guidelines listed in the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition – Text Revision (DSM-IV-TR).1 The manual currently defines five disorders, sometimes called pervasive developmental disorders (PDDs), as ASD:

Autistic disorder (classic autism)
Asperger’s disorder (Asperger syndrome)
Pervasive developmental disorder not otherwise specified (PDD-NOS)
Rett’s disorder (Rett syndrome)
Childhood disintegrative disorder (CDD).

This information packet will focus on autism, Asperger syndrome, and PDD-NOS, with brief descriptions of Rett syndrome and CDD in the section, “Related disorders.” Information can also be found on the Eunice Kennedy Shriver National Institute of Child Health and Human Development website and the Centers for Disease Control and Prevention website.

Since the litmus test for some groups will be how this document handles the question of vaccines, here is the section on ASD and Vaccines:

ASD and vaccines
Health experts recommend that children receive a number of vaccines early in life to protect against dangerous, infectious
diseases, such as measles. Since pediatricians in the United States started giving these vaccines during regular checkups, the number
of children getting sick, becoming disabled, or dying from these diseases has dropped to almost zero.

Children in the United States receive several vaccines during their first 2 years of life, around the same age that ASD symptoms
often appear or become noticeable. A minority of parents suspect that vaccines are somehow related to their child’s
disorder. Some may be concerned about these vaccines due to the unproven theory that ASD may be caused by thimerosal.

Thimerosal is a mercury-based chemical once added to some, but not all, vaccines to help extend their shelf life. However,
except for some flu vaccines, no vaccine routinely given to preschool aged children in the United States has contained
thimerosal since 2001. Despite this change, the rate of children diagnosed with ASD has continued to rise.
Other parents believe their child’s illness might be linked to vaccines designed to protect against more than one disease, such
as the measles-mumps-rubella (MMR) vaccine, which never contained thimerosal.

Many studies have been conducted to try to determine if vaccines are a possible cause of autism. As of 2010, none of the
studies has linked autism and vaccines.49, 50 Following extensive hearings, a special court of Federal judges
ruled against several test cases that tried to prove that vaccines containing thimerosal, either by themselves or combined with
the MMR vaccine, caused autism. More information about these hearings is available on the U.S. Court of Federal Claims’ website
at http://www.uscfc.uscourts.gov/omnibus-autism-proceeding.

The latest information about research on autism and vaccines is available from the Centers for Disease Control and Prevention at
http://cdc.gov/ncbddd/autism/topics.html. This website provides information from the Federal Government and independent organizations.

I haven’t gone through it entirely yet, but this looks like a good document. Something relatively short but addressing many of the questions that parents, especially new parents may have. It directly targets parents. However, it does discuss the transition to adulthood and adult living options, but, again, from a parent’s perspective. For example:

Preparing for your child’s transition to adulthood

The public schools’ responsibility for providing services ends when a child with ASD reaches the age of 22. At that time,
some families may struggle to find jobs to match their adult child’s needs. If your family cannot continue caring for an
adult child at home, you may need to look for other living arrangements. For more information, see the section, “Living
arrangements for adults with ASD.”

Long before your child finishes school, you should search for the best programs and facilities for young adults with ASD. If
you know other parents of adults with ASD, ask them about the services available in your community. Local support and
advocacy groups may be able to help you find programs and services that your child is eligible to receive as an adult.
Another important part of this transition is teaching youth with ASD to self-advocate. This means that they start to take
on more responsibility for their education, employment, health care, and living arrangements. Adults with ASD or
other disabilities must self-advocate for their rights under the Americans with Disabilities Act at work, in higher education,
in the community, and elsewhere.

Navigating College: A Handbook on Self Advocacy Written for Autistic Students from Autistic Adults

27 Oct

ASAN have launched a project on navigating college. This includes a website, NavigatingCollege.org and a book “Navigating College: A Handbook on Self Advocacy Written for Autistic Students from Autistic Adults” (available for download from the website, and in print from the New Hampshire University Institute on Disability bookstore.

Leaving high school and going to college is complicated for everyone. But if you’re a student on the autism spectrum who is about to enter higher education for the first time, it might be a little bit more complicated for you.

Maybe you’re worried about getting accommodations, getting places on time, or dealing with sensory issues in a new environment. Maybe you could use some advice on how to stay healthy at school, handle dating and relationships, or talk to your friends and classmates about your disability. Maybe you want to talk to someone who’s already dealt with these issues. That’s where we come in.

Navigating College is an introduction to the college experience from those of us who’ve been there. The writers and contributors are Autistic adults, and we’re giving you the advice that we wish someone could have given us when we headed off to college. We wish we could sit down and have a chat with each of you, to share our experiences and answer your questions. But since we can’t teleport, and some of us have trouble meeting new people, this book is the next best thing.

ASAN was able to get you this book with the help of some other organizations. The Navigating College Handbook was developed in collaboration with Autism NOW, and with funding from the Administration on Developmental Disabilities. The University of New Hampshire Institute on Disability is helping us with distribution. We’re really grateful for all of their help in getting this book out.

Good luck, and happy reading! We hope it helps.

ASAN have a Facebook page, Navigating College. They are looking for feedback. From the ASAN Facebook page:

ASAN is looking for high school and college students on the spectrum to give feedback on our new Navigating College handbook, now available for free download. If you’re interested, write us at info@autisticadvocacy.org or comment on this post. If we use your feedback as part of our NavigatingCollege.org website, we’ll mail you a free hard copy of the handbook for you to enjoy!

ASF Founding Board Member Dr. Paul Offit Elected to the Institute of Medicine

19 Oct

Dr. Paul Offit, founding board member of the Autism Science Foundation, has been elected to the Institute of Medicine.

From the Autism Science Foundation Blog:

Autism Science Foundation Founding Board Member Dr. Paul Offit has been elected to the Institute of Medicine (IOM) at the Academy of Natural Sciences. For three decades, Dr. Offit has been a leading researcher in the fields of virology and immunology, and a well-respected and outspoken voice on the science, safety and value of childhood vaccinations. He is also one of the most public faces of the scientific consensus that vaccines have no association with autism.

The IOM is part of the National Academies:

The Institute of Medicine (IOM) is an independent, nonprofit organization that works outside of government to provide unbiased and authoritative advice to decision makers and the public.

Established in 1970, the IOM is the health arm of the National Academy of Sciences, which was chartered under President Abraham Lincoln in 1863. Nearly 150 years later, the National Academy of Sciences has expanded into what is collectively known as the National Academies, which comprises the National Academy of Sciences, the National Academy of Engineering, the National Research Council, and the IOM.

Also elected this year is autism researcher Dr. Daniel Geshwind:

Daniel H. Geschwind, M.D., Ph.D., Gordon and Virginia MacDonald Distinguished Professor, departments of neurology, psychiatry, and human genetics, and director, program in neurogenetics and Center for Autism Research and Treatment, Semel Institute, David Geffen School of Medicine, University of California, Los Angeles

The 2011 “Vaccine Safety Conference” in Jamaica

6 Oct

Earlier this year, a conference was held in Jamaica. The declared subject: vaccine safety. Even from the beginning, it was clear that this was no ordinary scientific conference. It had all the signs of a junket. A meet-and-greet for vaccine “skeptics” and wealthy patrons. Precisely the sort of junket that people complain about “Big Pharma” hosting. Well, not precisely. I suspect even Big Pharma doesn’t put on such a lavish event.

The number of speakers was small (only 19), and didn’t include anyone who is a vaccine researcher. 21 presentations were made in the course of a week, leaving a lot of time for people to enjoy the resort and to network.

Talks included “Rethinking the germ theory”, “Vaccination Programs: Prevention or Corruption?” and “Gardasil: Prophylaxis or Medical Misconduct?”.

Getting a picture of the conference agenda? And by “agenda”, I do not mean the schedule.

The conference received some brief public attention when Anderson Cooper interviewed Andrew Wakefield. Mr. Wakefield (who refused to be on the segment if Seth Mnookin were included) appeared via Skype from that conference in Jamaica. Mr. Wakefield’s talk at the conference: “Autism & Vaccines: a Research Strategy Focused on Cause”.

The event was titled: Vaccine Safety|Evaluating the Science Conference. A nearly one week event (January 3-8) in the Tryall Club in Jamaica.

I’ve been to a lot of scientific conferences. I’ve even helped organize scientific conferences. None of them were ever held in a place remotely similar to the Tryall Club. Heck, when I think of “big pharma” hosting junkets for doctors, it’s in places not nearly as nice as the Tryall Club.

In case you didn’t get a chance to see the website, here’s a picture of the Tryall Club:

Nice, isn’t it? The Tryall Club isn’t a hotel. It is a collection of 86 Villas (including 73 privately owned estate villas) plus 13 “great house” suites.

The property’s 86 villas offer visitors a dazzling array of options, from beachfront bungalows to elegant hillside chalets. Each carefully situated villa offers distinctive architectural elements, a singular style and a unique floor plan. A couple may choose a cozy one-bedroom retreat, while an extended family of several generations may opt for a 7- or 8-bedroom manor.

Consider as an example, the six bedroom “Twin Palms” Villa. Cost for 1 week: $30,000, or $5,000 per bedroom. (Cost is $40K/week if you include the master suite). The Villa comes complete with a staff of 9 and “Dining areas are designed to seat 20 guests or more. Formal dining is in the 80’ dining room under Italian chandeliers at place settings of Lalique crystal, Tiffany china and silver from France.”

As I said, not like any conference I’ve ever attended.

So, who put this conference on? Aside from a stay in Jamaica, were the attendees compensated? I wondered these questions so I emailed the contact address on the website. Here’s the response:

The conference was co-sponsored by the National Vaccine Information Center and private individuals and family foundations who are concerned about the safety of vaccine ingredients, preparations, combinations and schedules. Speakers volunteered to speak as is customary for scientific conferences, and accommodations were provided in private homes donated by or as guests of individuals who are concerned about vaccine safety. No funds exchanged hands except to reimburse for travel expenses, which were funded by donations to the National Vaccine Information Center.

The Vaccine Safety Conference

“No funds exchanged hands except to reimburse for travel expenses, which were funded by donations to the National Vaccine Information Center.” Nice. Reimbursing the speakers directly probably isn’t tax deductible. Donating to NVIC is. And it lets NVIC look like they are pulling more money.

Who put this on? The sponsors are listed clearly on the conference website:

Albert J. and Lisa Claire Dwoskin Family Foundation

Cmdr. Richard and Joan Curtis

Mark and Candace Hart

Daisy and Paul Soros

Danny and Stency Wegman

One name jumps out (to me at least): Soros. Sponsors Paul and Daisy Soros. Paul Soros is the brother of George Soros, but is quite well off in his own right.

We are talking some serious money was backing this conference.

Case in point. First in that list is the Dwoskin family. Claire Dwoskin has worked as a board member of the National Vaccine Information Center.

The Dwoskins have hosted fundraisers for political candidates at their home and been guests at White House dinners.

Apparently, they also set up the “vaccine safety” conference website. Mrs. Dwoskin is listed as the contact for the website:

Administrative Contact:
Dwoskin, Claire novaccine4me@XXXXX.com
Vaccine Safety Conference

No, I did not make that email address up. It really is listed as “novaccine4me”. Pause a moment to consider that choice.

The physical address given for the website contact is that of the McLean, Virginia home of the Dwoskins. It is sizable and valuable. As the domain registration reports, this is also the address for “Vaccine Safety Conference”. It seems reasonable to assume that the Dwoskins are the primary organizers of the conference. The Dwoskins also appear to own other valuable property. Mr. Dwoskin is a real estate developer, so this is no great surprise. But, one property which they (or their business) are associated with: Twin Palms. Yes. the 7 bedroom Villa in Jamaica described above. What leads me to believe this? The website twinpalmsjamaica.com is registered to A.J. Dwoskin & Associates.

Seems reasonable to think that the first tier of presenters at the conference were hosted in Twin Palms.

In case you are curious as to the Dwoskins’ position on vaccines, Mrs. Dwoskin wrote in an email to John Stossel of Fox: “Vaccines are a holocaust of poison on our children’s brains and immune systems.”

Seriously. A holocaust of poison.

There is nothing wrong with wealthy people hosting gatherings of people on a subject they feel strongly about. Anyone who chooses an email address “novaccines4me” and considers vaccines “a holocaust of poison” certainly has strong feelings.

Wealthy people have a right to offer their hospitality to people who may promote their views. People with less means have the right to accept the largess of the wealthy.

I have the right to voice my opinion. This was a junket. Seriously. 6 days to have 19 speakers present? Rooms costing $5,000 a week? I wonder how much time at the “vaccine safety” conference was spent talking about safety and how much was spent talking about the “holocaust of poison” view of vaccines.

Next time I hear or read about Big Pharma buying off doctors with exotic junkets I’ll be thinking of Andrew Wakefield, talking via Skype from the Tryall Club in Jamaica.

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