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Ethical, Legal and Social Implications of Autism Research.

20 Sep

The National Institutes of Health’s Office of Autism Research Coordination (OARC) and the Autism Coordinating Committee (ACC) are sponsoring the workshop: Ethical, Legal and Social Implications of Autism Research.

The announcement is below. This sounds like what could be a very useful workshop and a chance to be heard on an important topic.

Date:

Monday, September 26, 2011

Time:

8:30 a.m. to 5:00 p.m. Eastern time (ET)

Agenda:

The National Institutes of Health’s Office of Autism Research Coordination (OARC) and the Autism Coordinating Committee (ACC) are sponsoring the workshop: Ethical, Legal and Social Implications of Autism Research. Leading community stakeholders, bioethicists, and scientific researchers will address topics such as ethical implications of genetic and environmental risk factor research, ethical issues in genetic testing, risk communication, ethical issues in childhood and adult diagnosis, and effective partnering with families and the self advocacy community to advance treatment/intervention and services research.

The goal of the workshop will be to define possible approaches for conducting future studies of ethical, legal, and social implications of ASD research, taking into consideration how these types of issues have been approached in related medical conditions.

To view the agenda, click here.

Place:

Bethesda North Marriott Hotel & Conference Center
5701 Marinelli Road
Bethesda, Maryland 20852
Map and Directions This link exits the Interagency Autism Coordinating Committee Web site and enters a non-government Web site.

Webcast Live:

http://nih.granicus.com/MediaPlayer.php?event_id=67 This link exits the Interagency Autism Coordinating Committee Web site and enters a non-government Web site.

Conference Call Access:

Dial: 888-390-3404
Access code: 6003464

Cost:

The meeting is free and open to the public.

Pre-Registration:

http://www.acclaroresearch.com/oarc/9-26-11/ This link exits the Interagency Autism Coordinating Committee Web site and enters a non-government Web site.
Pre-registration is strongly recommended, but pre-registration does not guarantee you a seat. Seating is first come, first served, with expedited check-in for those pre-registered. Seating is limited to room capacity.

Access:

On-site parking available with validation
2 1/2 blocks from the White Flint Metro (Red Line)

Contact Person:

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, Room 8185a
Rockville, Maryland 20852-9669
Phone: 301-443-6040
Email: IACCPublicInquiries@mail.nih.gov

Please Note:

This workshop will also be open to the public through a conference call. Members of the public who participate using the conference call phone number will be able to listen to the discussion but will not be heard. If you experience any technical problems with the conference call, please e-mail OARC’s technical support team at IACCTechSupport@acclaroresearch.com or call the OARC Technical Support Help Line at 443-680-0098.

Individuals who participate in person or by using these electronic services and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the Contact Person listed on this notice at least 7 days prior to the meeting.

As a part of security procedures, attendees should be prepared to present a photo ID at the meeting registration desk during the check-in process. Pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered. Please note: Online pre-registration will close by 5:00 p.m. the day before the meeting. After that time, registration will have to be done onsite the day of the meeting.

Schedule for meeting is subject to change.

Autism Science Foundation relaunches website

19 Sep

The Autism Science Foundation has relaunched their website with a new look and much more content. The press release is below, and includes links to some of the main pages.

The site keeps the basic style of the original, but at the same time has gone through a major rework.

(September 19, 2011—New York, NY)— The Autism Science Foundation (ASF), a nonprofit organization dedicated to supporting and funding autism research, announced today that it has re-launched its website as an enhanced, interactive resource for parents, individuals with autism, teachers, scientists and other autism stakeholders.

The website is the central distribution point for the latest in autism science and research. The site features:

•Leading autism research broken down by year
•In-depth interviews with noted scientists and promising autism researchers
•A daily round-up of news about autism from major press and high impact blogs
•Details about ASF funding opportunities for scientists and other stakeholders
•Explanation of evidence-based treatments for autism
•Information about the early warning signs of autism and autism diagnosis
•Links to studies looking at vaccination and autism

Over the next few weeks, ASF’s team will be adding more features to the site including autism research sorted by topic area and a section about autism research studies seeking participants.

“It’s crucial that families, educators and scientists have access to up-to-date information that they know has been peer-reviewed or vetted by ASF’s Scientific Advisory Board,” said ASF co-founder Karen London. “Since ASF’s inception in 2009, we have aimed to be a central and trusted source of rigorous science information for the autism community.”

“We are pleased to be able to offer the autism community a broad and deep source of evidence-based information that integrates more interactive features and that reorganizes information to make it more useful and easier to find, in response to community feedback,” said Jonathan Carter, ASF’s operations manager. “The site offers ways for everyone who has a connection to autism to get involved in this important issue.”

ASF began funding research grants in 2009, its first year of operations, and has increased its funding levels each year. Since 2009, it has funded nearly half a million dollars in research grants. The organization was recently named the number one startup nonprofit in the “Disabilities” category by Philanthropedia/Guidestar.

ASF is a 501(c) (3) public charity. Its mission is to support autism research by providing funding to scientists and organizations conducting autism research. ASF also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism. To learn more about the Autism Science Foundation or to make a donation visit www.autismsciencefoundation.org.

Note that I occasionally write for the ASF blog.

Save the Date! ASAN 5-Year Anniversary Celebration

14 Sep

The Autistic Self Advocacy Network is turning five. Unlike most five-year-olds, they are throwing their own party. At the National Press Club, no less:

Save the Date!

The Autistic Self Advocacy Network’s
5 Year Anniversary Celebration

Wednesday, November 16, 2011
6:30 – 9:00 pm

Join us for a special celebration and fundraising event at
The National Press Club in Washington, D.C.

Cocktails, hors d’oeuvres and dessert will be served.

Keynote Speaker:

Dr. Alexa Posny,
Assistant Secretary for
Special Education and Rehabilitative Services

Honoree:

Ms. Nancy Thaler,
Executive Director,
National Association of State Directors
of Developmental Disability Services

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.

www.autisticadvocacy.org

Autism Phenome Project announces first results at the Asia Pacific Autism Conference

8 Sep

The Asia Pacific Autism Conference is ongoing in Perth Australia. Prof. David Amaral of the Mind Institute at U.C. Davis (California) will speak and present the first results from the Autism Phenome Project. This is a study to separate autism into various groups, or phenomes.

Here is a blurb from the press announcement for the conference:

The announcement of the first results of the Autism Phenome Project, the largest and most comprehensive assessment of children with Autism ever attempted. The project started in 2006 and is being conducted at the MIND Institute at the University of California, Davis (UC Davis). It is headed by Dr David Amaral and involves 52 scientists across eight fields. Dr Amaral is the President of the International Society of Autism Research. He is Distinguished Professor of Psychiatry and Behavioural Sciences at the Centre for Neuroscience at UC Davis. He is also Research Director and Beneto Foundation Chair of the MIND Institute. Dr Amaral will announce the results.

An Australian news outlet carried the story as US researchers’ discovery promises answers on autism.

Researchers from the University of California Davis’s MIND Institute in Sacramento began the Autism Phenome Project in 2006. They have been studying the brain growth, environmental exposure and genetic make-up of 350 children aged between 2 and 3 1/2 years, and have so far found two biologically distinct subtypes of autistic brain development.

One group of children – all boys – had enlarged brains and most had regressed into autism after 18 months of age; another group appeared to have immune systems that were not functioning properly.

Prof. Amaral’s slides have been made available.

They show, amongst other findings

Total cerebral volume is highly variable in ASD, but appears to be on average higher in ASD boys than controls.

There are various onset types: early onset, plateau, and regression.

Those who exhibit loss of skills have enlarged brains. But, interestingly, the head circumferences start to diverge at about 4-6 months. I.e. there are signs even before the regression occurs.

However, he has a talk “Neurobiological and neuro-immune features of Autism” with the following abstract:

The slides do not appear to discuss the immune phenotype mentioned in the press. However, Autism now affects 1:110 children in the United States. It is a complex disorder that likely has many variants and various etiologies. The first half of this presentation evaluates the hypothesis that the amygdala plays an important role in the pathophysiology of autism. First, MRI studies of the amygdala in children with autism are presented. Then, postmortem data on the morphology of the amygdala in autism are described. Observations are presented both on neurons and glia in the amygdala. Taken together these data confirm that the amygdala is clearly pathological in autism. Given that the amygdala is pathological, what might this pathology contribute to the behavioural impairments of autism? To address this issue, research on the nonhuman primate is discussed. These studies highlight a role for the amygdala in fear regulation and perhaps in mediating the co?morbid anxiety in autism. In the second part of the talk, data demonstrating abnormalities of the immune system of children with autism and a subset of mothers of children with autism are discussed. I also review findings of a nonhuman primate model of autism based on a neuroimmune intervention.

MMR Vaccine and Autism: Vaccine Nihilism and Postmodern Science

6 Sep

In a commentary for the Mayo Clinic Proceedings, Gregory A. Poland, MD writes about MMR and autism. In case you don’t get the idea of his stance from the title of the article, MMR Vaccine and Autism: Vaccine Nihilism and Postmodern Science, it starts out with a quote:

Nothing is more terrible than to see ignorance in action.

Johann Wolfgang von Goethe

I’m sure people will counter that they are very “smart” and “well educated” and, therefore, not ignorant when they promote the MMR/autism notion. Is it ignorance, willful ignorance, bias, dishonesty, some mix or something else entirely that is behind the perpetuation of the idea? I don’t know. On a very real level, it doesn’t matter. What matters is the fact that the MMR hypothesis was wrong and that those who continue to promote it are causing a very real danger to society.

That said, here are Dr. Poland’s views in the introduction to his paper:

It is a truism that acting in one’s perceived self-interest is not always in one’s self-interest. Perhaps nowhere is this truer in contemporary public health than for the issue of the measles-mumps-rubella (MMR) immunization and persistent fears about a possible connection with autism. Although each of these 3 diseases had been controlled in the United States with the widespread use of the MMR vaccine, in the past decade those gains have been slipping. Even though the United States has had fewer than 50 measles cases per year during the past decade (mostly imported from other countries), 156 cases have already been identified in the first 6 months of 2011. 1 European countries such as England, Wales, Italy, France, Spain, and Germany are also experiencing substantial increases in measles outbreaks.

Why should we be concerned? Measles is the most transmissible human disease known. Even with modern medical care, approximately 1 of every 3000 infected persons die, and many more are hospitalized or otherwise harmed as a result. Population coverage (herd immunity) needs to be in excess of 96% to prevent outbreaks. In addition, measles is a disease for which eradication is both possible and planned, a goal that obviously cannot be met given current vaccine coverage levels.

This predictable sequence of falling coverage levels, followed by outbreaks of disease, has occurred because of decreased public confidence in the safety of the MMR vaccine. In large part, this has resulted from incorrect assertions that the vaccine plays a role in the development of autism, an idea promoted by Andrew Wakefield. No credible scientific evidence, however, supports the claim that the MMR vaccine causes autism, and indeed, national medical authorities and scientific professional societies have unanimously …

This article is commentary (i.e. not a research article), but there are some good points and questions made:

Why in the face of nearly 2 dozen studies and every scientific committee rejecting such an MMR-autism connection does this myth persist?

As expected, he notes the celebrity aspect of the vaccine-causation notion. He also discusses the recent paper in the PACE Law Review.

Under “Moving Forward”, Dr. Poland writes:

At some point, a point I believe we have well passed, the small group of people who claim such connections, who have no new or credible data, and for which their assumptions and hypotheses have been discredited must simply be ignored by scientists and the public and, most importantly, by the media, no matter how passionate their beliefs to the contrary. Such individuals are denialists at best, and dangerous at worst. Unfortunately, the media has given celebrities who comment on an autism-MMR link far more attention than they deserve, and the public, unfamiliar with the background science, has confused celebrity status with authority. Such a phenomenon has not been lost on those wishing to continue the discussion. As an example, J. Hanlon, cofounder of Generation Rescue (an organization that advocates for an autism-MMR vaccine link) commented, in regard to the finding that both Andrew Wakefield and his assertion of a connection between autism and MMR vaccine had been discredited, that to those who believe vaccines cause autism “Andrew Wakefield was Nelson Mandela and Jesus Christ all wrapped in one.”

Prediction: we will hear all about how this commentary is obviously worthless because the author didn’t correctly cite J.B. Handley. If you are wondering what I mean, read again, Mr. Handley is referred to as J. Hanlon. I wish the author hadn’t made that mistake as such small errors are exploited in exactly this way. But, at the same time, this puts some perspective on the situation regarding Mr. Handley. He is a well known name in a very small community. He has become one of the go-to people for comments critical of vaccination (as in the Jesus Christ/Nelson Mandella article).

Prediction 2: Dr. Poland’s article will be called an attempt at censorship (see the conclusion below). Probably with no sense of irony by the same people who recently stated that Autism Speaks should “Shut up, shut down and go away.”

Prediction 3: People will still refuse to see how strange the “Nelson Mandela and Jesus Christ” comment read to the majority of readers. OK, I am predicting the past here, but I expect this to go forward too. Dr. Poland didn’t pick this quote to place Andrew Wakefield in good light.

That all said, I agree with Dr. Poland. It is well past time for the MMR story to be set aside. Just because there are adherents to the idea doesn’t mean that news organizations need to give it false balance.

Dr. Poland concludes his article with a simple summary: the MMR/autism question has been investigated closely and no link is found. The decision to forgo immunization based on this fear is not without danger. Those who promote the MMR/autism link in the face of all the evidence are not working for the public good:

For anyone adhering to the scientific model of discovery, experimentation, and evidence, the trial is over and the jury back—there is no known scientific association between receipt of MMR vaccine and the subsequent development of autism. Making the decision to not immunize children with the MMR vaccine because of fear of such an association —rather than credible scientific evidence—places children and others at great risk as current measles outbreaks in the United States and Europe illustrate. Vaccine nihilists who continue to claim such associations are simply wrong, and they pedal an agenda other than for the public good. At this point, the antivaccine groups and conspiracy proponents promoting such an association should be ignored, much as thinking people simply ignore those who continue to insist that the earth is flat or that the US moon landing in 1969 did not really occur

He concludes simply but strongly:

There is no law against being foolish, nor any vaccine against ignorance; however, in the meantime the health of millions of children in the United States and worldwide is being placed at unnecessary and real risk through continued deliberate misinformation and discredited unscientific beliefs, and that should be a crime.

Lessons from the MMR scare by Fiona Godlee

2 Sep

Fiona Godlee, editor of the British Medical Journal, will address the National Institutes of Health (NIH) on Tuesday, Sept. 6th. Her talk, Lessons from the MMR scare, will take place at 11am eastern time, and is scheduled for 90 minutes.

It will also be videocast.

Please join BMJ Editor Fiona Godlee for a discussion of the stunning investigation she published earlier this year that revealed the MMR scare was based not on bad science but on deliberate fraud. The three-part series was produced by journalist Brian Deer, who spent seven years investigating Andrew Wakefield’s infamous study linking the MMR vaccine with autism, discovering Wakefield had been paid by a lawyer to influence his results and had blatantly manipulated the study data.

In an editorial accompanying Deer’s report, Godlee and colleagues noted, “Science is based on trust. Without trust, research cannot function and evidence based medicine becomes a folly. Journal editors, peer reviewers, readers, and critics have all based their responses to Wakefield’s small case series on the assumption that the facts had at least been honestly documented. Such a breach of trust is deeply shocking. And even though almost certainly rare on this scale, it raises important questions about how this could happen, what could have been done to uncover it earlier, what further inquiry is now needed, and what can be done to prevent something like this happening again.”

For more information, read the BMJ articles:

The fraud behind the MMR scare, Fiona Godlee, et al
Wakefield’s article linking MMR vaccine and autism was fraudulent
Institutional and editorial misconduct in the MMR scare

Secrets of the MMR scare: Brian Deer

Part 1: How the case against the MMR vaccine was fixed
Part 2: How the vaccine crisis was meant to make money
Part 3: The Lancet’s two days to bury bad news

The NIH website gives a brief biographical blurb on Ms. Godlee:

About Fiona Godlee

Fiona Godlee has been Editor in Chief of the BMJ since 2005. She qualified as a doctor in 1985, trained as a general physician in Cambridge and London, and is a Fellow of the Royal College of Physicians. Since joining the BMJ in 1990 she has written on a broad range of issues, including the impact of environmental degradation on health, the future of the World Health Organisation, the ethics of academic publication, and the problems of editorial peer review. In 1994 she spent a year at Harvard University as a Harkness Fellow evaluating efforts to bridge the gap between medical research and practice. On returning to the UK, she led the development of BMJ Clinical Evidence, which evaluates the best available evidence on the benefits and harms of treatments and is now provided worldwide to over a million clinicians in 9 languages. In 2000 she moved to Current Science Group to establish the open access online publisher BioMed Central as Editorial Director for Medicine. In 2003 she returned to the BMJ Group to head up its new Knowledge division. She has served as President of the World Association of Medical Editors (WAME) and Chair of the Committee on Publication Ethics (COPE) and is co-editor of Peer Review in Health Sciences. She lives in Cambridge with her husband and two children.

hat tip to a commenter at Respectful Insolence for this information.

The Autism Speaks Book List

29 Aug

I want to like Autism Speaks. I really do. I know some very good people working with Autism Speaks. From a very practical standpoint, they are one of the biggest autism organizations and I need them to be doing good.

Unfortunately, sometimes Autism Speaks does things which I really find difficult to support. Recently, I pointed out that Autism Speaks is sponsoring a conference by the National Autism Association. This conference will be hosting Andrew Wakefield to speak. In my view, Mr. Wakefield is a person whose damage to the autism communities can not (and should not) be minimized. Even though Autism Speaks isn’t directly hosting Mr. Wakefield, I feel that it would be good and appropriate to withhold sponsorship of such an event.

During the discussion of that article I decided to search for how Autism Speaks discusses Mr. Wakefield on their website. The Autism Speaks website is a resource for many families looking for information. I found that Autism Speaks has a book list in their Resource Library (Family Services » Resource Library » Books) and this list includes “Callous Disregard: Autism and Vaccines – The Truth Behind a Tragedy”, Mr. Wakefield’s account of the events surrounding the loss of his medical license.

Frankly, I find this a poor resource for autistics, families, well anyone looking for accurate and useful information. Shannon Rosa did what I should have done and contacted Autism Speaks for comment and reported the response the comments here.

Kim, you are awesome. And I agree, working towards real change is hard; it requires a lot of processing power, a lot of reflection, a lot of synthesis, a lot of perseverance—and an eye on long-term as well as short-term goals.

Re: listing Callous Disregard, Autism Speaks pointed me to their resources section’s legal disclaimer:

“Autism Speaks maintains the Family Services Resource Guide as a service to families as a reference tool. Every effort is made to ensure listings are up-to-date. Autism Speaks does not endorse or claim to have personal knowledge of the abilities of those listed. The resources listed on this page are not intended as a recommendation, referral, or endorsement of any resource or as a tool for verifying the credentials, qualifications, or abilities of any organization, product or professional. Users are urged to use independent judgment and request references when considering any resource associated with diagnosis or treatment of autism, or the provision of services related to autism.”

But I still think including Callous Disregard reflects badly upon them, and have said so. The conversation continues.

Since that time two small changes have occurred to that page. First, a disclaimer was added (it wasn’t there before, as the Google cache version confirms). The disclaimer:

Autism Speaks does not provide medical or legal advice or services. Rather, Autism Speaks provides general information about autism as a service to the community. The information provided on this website is not a recommendation, referral, or endorsement of any resource, therapeutic method, or service provider and does not replace the advice of medical, legal, or educational professionals. Autism Speaks has not validated and is not responsible for any information or services provided by third parties. You are urged to use independent judgment and request references when considering any resource associated with the provision of services related to autism.

I agree…to a point. Autism Speaks can’t be responsible for everything said in every resource. However, Mr. Wakefield was found guilty of dishonesty and unethical behavior in his research activities involving autistics. Even if one believes Mr. Wakefield’s account (which is clearly contradicted by the facts), it doesn’t give any real information of value to, say, a family with a new diagnosis. Autism Speaks can and does make a distinction of what books to host. You won’t find “The Empty Fortress” by Bruno Bettleheim on the list (surprisingly enough, it is still in print).

The second change to the Autism Speaks books resource page? The link has been removed to “Callous Disregard”. The book is still listed, but there is no link to the publisher’s site any longer.

The vaccine-autism notion has caused a great deal of harm to the autism communities. So much time and money has been thrown at researching the supposed epidemic of vaccine-induced autism. Much more to the point for an organization like Autism Speaks: this idea has caused a great deal of harm to families, a great deal of pain and, most importantly, a great deal of unwarranted and sometimes dangerous medicine to be practiced on autistics. This is why I would go further than to question why Autism Speaks lists a book by someone proven dishonest and unethical. I would ask why continue to give support to ideas whose time has clearly passed.

For example:

Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy
by David Kirby

David Kirby’s book was speculative at best when written. It is now very clearly false. Thimerosal did not cause an autism epidemic. And why list this under the subheading “Medical, Biomedical, Diet Interventions”? Mr. Kirby isn’t anything close to a medical professional and the book is more of a speculative thiller involving conspiracies which didn’t occur to cover up a mercury-induced epidemic that didn’t happen. Here’s the blurb for Evidence of harm:

Evidence of Harm explores the heated controversy over what many parents, physicians, public officials, and educators have called an “epidemic” of afflicted children. Following several families, David Kirby traces their struggle to understand how and why their once-healthy kids rapidly descended into silence or disturbed behavior, often accompanied by severe physical illness. Alarmed by the levels of mercury in the vaccine schedule, these families sought answers from their doctors, from science, from pharmaceutical companies that manufacture vaccines, and finally from the Center for Disease Control and the Food and Drug Administration-to no avail. But as they dug deeper, the families also found powerful allies in Congress and in the small community of physicians and researchers who believe that the rise of autism and other disorders is linked to toxic levels of mercury that accumulate in the systems of some children.

An important and troubling book, Evidence of Harm reveals both the public and unsung obstacles faced by desperate families who have been opposed by the combined power of the federal government, health agencies, and pharmaceutical giants. From closed meetings of the FDA, CDC, and drug companies, to the mysterious rider inserted into the 2002 Homeland Security Bill that would bar thimerosal litigation, to open hearings held by Congress, this book shows a medical establishment determined to deny “evidence of harm” that might be connected with thimerosal and mercury in vaccines. In the end, as research is beginning to demonstrate, the questions raised by these families have significant implications for all children, and for those entrusted to oversee our national health.

Other books of a questionable nature:

What Your Doctor May Not Tell You About(TM) Children’s Vaccinations
by Stephanie Cave

This is a book which links vaccines to autism using, for example, the incorrect comparison of mercury poisoning symptoms to autism, and gives the Wakefield (called “One of the most prominent researchers in MMR vaccine research) hypothesis for MMR causing autism.

Another example from the Autism Speaks book list:

The Age of Autism: Mercury, Medicine, and a Man-Made Epidemic
by Dan Olmsted, Mark Blaxill

This is another in the series of books making the link between autism and mercury. On the one hand, it is nice for Autism Speaks to host a link to a book by people who are such harsh critics of Autism Speaks. But, why be polite when the book is a failed hypothesis wrapped in a bad understanding of science?

Another book:

Vaccine Epidemic: How Corporate Greed, Biased Science, and Coercive Government Threaten Our Human Rights, Our Health, and Our Children
edited by Louise Kuo Habakus, MA, and Mary Holland, JD

Amongst other topics discussed, this book includes a chapter which is basically a summary of “Callous Disregard”. I know this is getting repetitive, but Autism Speaks could do families a service by steering them away from this.

The book list is long. No one will agree with all the books listed as being accurate and valuable. I have no problem with that. I do feel that some level of screening is being done and more should be done. A new family deserves better than to waste their time, money and emotions on the failed ideologies of the past decade. They are, after all, trying to perform a service with this book list. I am only asking that they follow through on the spirit of this. Perform a service. Pointing them at sources of misinformation is no service. Disclaimers don’t change that.

ACHAMP resorts to calling health legislation the “California Pedophile Protection Act of 2011”

25 Aug

ACHAMP, now the “Autism Action Network”, wants Californians to lobby against Assembly Bill 499. Why? Because it would allow minors access to the vaccine against HPV (human papillomavirus) without parental consent.

I have yet to hear a good explanation why supposedly autism organizations have such a fixation on the HPV vaccine. Seriously, has anyone made the claim that vaccines given to 12 year olds cause autism?

Here’s what ACHAMP has to say about this law:

If a twelve-year old child requests a vaccines for a sexually transmitted disease, what conclusion could a rational person come to other than a sexual crime has either occurred or will occur in the near future, which is exactly the standard required by California law for mandated reporters. How can a physician or nurse give a vaccine for a sexually transmitted disease, or other professionals counsel a child on getting such a vaccine, without the child’s parents’ involvement, and obey the mandated reporter laws? We don’t know either, which is why we consider this bill to the California Pedophile Protection Act of 2011.

The “California Pedophile Protection Act of 2011”?!? Wow, ACHAMP. Besides the fact that the logic is completely off, what’s the need for this language?

Here is the text of AB 499

FEBRUARY 15, 2011

An act to amend Section 6926 of the Family Code, relating to minors.

LEGISLATIVE COUNSEL’S DIGEST

AB 499, as introduced, Atkins. Minors: medical care: consent.

Existing law allows minors to consent to specified forms of medical or dental treatment.

This bill would, in addition, allow a minor who is 12 years of age or older to consent to medical care related to the prevention of a sexually transmitted disease.

Vote: majority. Appropriation: no. Fiscal committee: no. State-mandated local program: no.

THE PEOPLE OF THE STATE OF CALIFORNIA DO ENACT AS FOLLOWS:

SECTION 1. Section 6926 of the Family Code is amended to read:
6926. (a) A minor who is 12 years of age or older and who may have come into contact with an infectious, contagious, or communicable disease may consent to medical care related to the diagnosis or treatment of the disease, if the disease or condition is one that is required by law or regulation adopted pursuant to law to be reported to the local health officer, or is a related sexually transmitted disease, as may be determined by the State Director of Health Services Public Health Officer
.
(b) A minor who is 12 years of age or older may consent to medical care related to the prevention of a sexually transmitted disease.

(b)
(c) The minor’s parents or guardian are not liable for payment for medical care provided pursuant to this section.

As stated, this modifies California Family Code Section 6926

(a) A minor who is 12 years of age or older and who may have come into contact with an infectious, contagious, or communicable disease may consent to medical care related to the diagnosis or treatment of the disease, if the disease or condition is one that is required by law or regulation adopted pursuant to law to be reported to the local health officer, or is a related sexually transmitted disease, as may be determined by the State Director of Health Services.
(b) The minor’s parents or guardian are not liable for payment for medical care provided pursuant to this section.

Aside from the blatant fear mongering and inflammatory language, ACHAMP is wrong on many counts. California already allows for minors to be treated without parent consent for sexually transmitted diseases, pregnancy, abortion, HIV testing and birth control.

Yes, California minors can seek treatment for STD’s, but if we try to amend the law to allow for prevention, it is a “pedophile protection act”.

I wonder how many members of ACHAMP waited until age 18 before participating in sexual activity with their peers? Or, do they allow former pedophiles (by their own definition) into their ranks? (see how your twisted logic works, ACHAMP?)

I’d like to say I’m surprised by ACHAMP. Unfortunately, I’m not. I do have hopes that someday these groups will abandon the cheap shots, inflammatory language and fear mongering. Heck, I have hope that they might focus the majority of their attention on making a better life for autistics.

Autism Science Foundation issues new request for scientific grant proposals

18 Aug

The Autism Science Foundation funds research. They have funded predoctoral and postdoctoral researchers and are seeking proposals for this year’s round of grants. Personally, I like this focus. I like the idea of bringing good new people into autism research.

Here is the press release:

AUTISM SCIENCE FOUNDATION ISSUES NEW REQUEST FOR SCIENTIFIC GRANT PROPOSALS
Grants will fund pre- and postdoctoral autism research fellowships

(August 18, 2011—New York, NY)–The Autism Science Foundation, a not-for-profit organization dedicated to supporting and funding autism research, today announced that it had issued a new request for scientific proposals. ASF is inviting applications for Pre- and Postdoctoral Training Awards from graduate students, medical students and postdoctoral fellows interested in pursuing careers in basic and clinical research relevant to autism spectrum disorders. In the past two years, ASF has funded over $400,000 in pre and postdoctoral grants.

“This is one of our most important funding mechanisms” said Alison Singer, president of the Autism Science Foundation. “The pre- and postdoctoral fellowships not only build our knowledge about what causes autism and how best to treat it, but also build our future by encouraging outstanding young investigators to dedicate their careers to autism research.”

“Outstanding research is the greatest gift we can offer our families” said Karen London, ASF co-founder. “We are so grateful to all our donors and volunteers who have come together to support autism research and who make these grants possible.”

The proposed training must be scientifically linked to autism. Autism Science Foundation will consider for training purposes all areas of related basic and clinical research including but not limited to: human behavior across the lifespan (language, learning, communication, social function, epilepsy, sleep, repetitive disorders), neurobiology (anatomy, development, neuro-imaging), pharmacology, neuropathology, human genetics/genomics, immunology, molecular and cellular mechanisms, studies employing model organisms and systems, and studies of treatment and service delivery. Applications must be received by November 18, 2011.

Additional information about the RFA can be found at www.autismsciencefoundation.org/ApplyForaGrant.html
The Autism Science Foundation is a 501(c)(3) public charity. Its mission is to support autism research by providing funding to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. The organization also provides information about autism to
the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.
Grant applications will be reviewed by members of ASF’s Scientific Advisory Board (SAB) and other highly qualified reviewers. Current SAB members include Dr. Joseph Buxbaum (Mt. Sinai School of Medicine); Dr. Emanuel DiCicco-Bloom (UMDNJ-Robert Wood Johnson Medical School); Dr. Sharon Humiston (University of Rochester); Dr. Bryan King (University of Washington, Seattle); Dr. Ami Klin (Emory University); Dr. Harold Koplewicz (The Child Mind Institute); Dr. Eric London (New York Institute for Basic Research); Dr. Catherine Lord (New York Institute for Brain Development); Dr. David Mandell (University of Pennsylvania/CHOP); and Dr. Matthew State (Yale Medical School).

To learn more about the Autism Science Foundation’s grant programs, and to read about projects funded through this mechanism in prior years, visit www.autismsciencefoundation.org/ApplyForaGrant.html

Media Contact Info:

Dawn Crawford
Autism Science Foundation
dcrawford@autismsciencefoundation.org

The Autism Science Foundation has posted this to their blog: ASF Issues New Request for Scientific Grant Proposals: Grants will fund pre- and postdoctoral autism research fellowships

Why is Autism Speaks sponsoring a conference featuring Andrew Wakefield?

18 Aug

It’s no secret that the National Autism Association is a staunch supporter of Andrew Wakefield. Mr. Wakefield, of course, is the researcher whose work on MMR and autistic children promoted the vaccine/autism link. Mr. Wakefield’s work was fraught with ethical lapses and research fraud. In short, from my perspective, Mr. Wakefield may rank as the person who has caused the most harm within the autism communities in recent decades.

Check the speaker list for the upcoming NAA conference. I’ll draw your attention to two points. First, Andrew Wakefield is scheduled to speak. Second, Autism Speaks is listed as a sponsor of the conference, sharing space with an HBOT company and a mail-order medical laboratory.

Mr. Wakefield is scheduled to speak about his next book. He has been involved with a family in Arizona who are battling child protective services. Here is the blurb on his upcoming talk:

Hoping for Perpetual Sunshine

This presentation is the subject of a new book coming out the spring of 2012. It deals with the hazards of pursuing a diagnosis of Munchausen Syndrome by Proxy (MSBP) in children with an Autistic Spectrum Disorder (ASD), particularly those with gastrointestinal (GI) disease and/or dysfunction. Specifically, it reviews the symptomatic presentation of GI disorders and, the frequency and nature of GI disease in affected children. It discusses the history of MSBP and briefly reviews alleged cases involving “factitious” GI symptoms. The main part of the talk will describe the experience of one family, deconstructing the evidence against the parents and their alleged fabrication of their children’s health issues, in order to identify not only the shortcomings of the diagnosis itself, but also the systematic problems that arise out of institutionalized ignorance. Deficiencies on the part of Social Services, Child Protective Services, the judiciary, and the medical profession, are identified and analyzed in respect of the published science on the presentation, pathogenesis, and treatment of autism.

Autism Speaks has a choice in where to spend their money and where to spend their reputation. Sponsoring a conference which brings Andrew Wakefield to speak to a segment of the autism community is not a wise choice, in my opinion.

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