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Autism Speaks Hails House Approval of Bill Renewing Combating Autism Act for Another Three Years

20 Sep

The U.S. House of Representatives have voted to approve the Combating Autism Re authorization Act (CARA). The announcement, from Autism Speaks, is below:

Autism Speaks Hails House Approval of Bill Renewing
Combating Autism Act for Another Three Years

Urges Quick Senate Action Before Sept. 30 Deadline

NEW YORK, N.Y. (September 20, 2011) – Autism Speaks, the nation’s largest autism science and advocacy organization, hailed today’s voice vote by the U.S. House of Representatives approving the Combating Autism Reauthorization Act, and urged the Senate to quickly complete congressional action on the bill and send it to President Obama.

The legislation would renew the 2006 Combating Autism Act, which expires September 30, renewing the federal government’s commitment to fund autism research and treatment for another three years. The bill would sustain federal funding at current levels, authorizing $693 million for research and treatment for autism and related disorders.

“Autism Speaks thanks Reps. Chris Smith (R-NJ) and Mike Doyle (D-PA) for their leadership in assuring a strong federal response to autism, which now affects 1 in every 110 children—including 1 in 70 boys,” said Autism Speaks co-founder Bob Wright. “Autism has been declared a public health emergency—doing nothing is not an option.”

Action on the bill moves to the Senate where the measure cleared the Health, Education, Labor and Pensions Committee on Sept. 7 by unanimous vote.President Obama has pledged to sign a bill reauthorizing the CAA this year. The CDC has determined that the incidence of autism in America has jumped to 1 in 110 children, and 1 in every 70 boys.

CARA would authorize a total of $693 million on continued biomedical and treatment research on autism and require further development of an overall strategic plan for the intensification, expansion and better coordination of federal efforts designed to help persons with autism and their families. The fight for CARA in the Senate has been led by Senators Robert Menendez (D-NJ) and Mike Enzi (R-WY).

The Combating Autism Act of 2006 was signed into law on December 19, 2006 by President George Bush following a nearly unanimous Congressional vote. The CAA made a clear statement by the U.S. government on the public health emergency posed by the growing prevalence of ASDs, and the lack of adequate research, effective treatments, and services to address this urgent and growing crisis.

Autism – Combating Autism Reauthorization Act to be voted on this evening by the House of Representatives

20 Sep

The Combating Autism Reauthorization Act is schedule to be voted on in the U.S. House of Representatives today. Amongst other things, the Act sets out authorizations for research funding for autism. This is also the law which authorizes the Interagency Autism Coordinating Committee (IACC).

Below is the announcement from The Arc. The link helps you find your congressperson’s phone number to call and ask them to vote (my congressman is voting for it).

GOOD NEWS AND ACTION NEEDED TODAY
URGE YOUR REPRESENTATIVE TO PASS THE COMBATING AUTISM ACT REAUTHORIZATION
Call Now
Enter Your Zip Code

September 20, 2011

We have good news! It appears that our advocacy over the past few weeks is starting to pay off!

We have just been informed (directly by Majority Leader Eric Cantor’s office) that the House leadership has put HR 2005, the reauthorization of the Combating Autism Act, on the “suspension calendar” today, Tuesday, September 20 at 6:30 p.m. This means that the House bill could be passed on a fast-track procedure without committee consideration. They need 2/3 of the Representatives present and voting for the bill to be passed under this procedure.

What Does the Combating Autism Act Do?

It provides funding to educate professionals about proper screening, diagnosis, and intervention for children with autism spectrum disorder and other developmental disabilities. It also funds autism research and surveillance. The Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program is just one of the things that the CAA supports. Click here to learn more.

Why is This Important Now?

The Combating Autism Act will expire at the end of this month. If it is not reauthorized before then, people with autism and other developmental disabilities stand to lose appropriate diagnostic, early intervention, and support services.

Take Action

Call your Representative’s office TODAY before 6:30 p.m. EST. Click on the “Take Action” link and enter your zip code to locate your representative’s phone number.

What to Say:

“Please Vote for H.R. 2005, the reauthorization of the Combating Autism Act, when it comes up for a vote under “Suspension of the Rules” this evening.”

NCD Meets with Secretary Duncan on Forthcoming No Child Left Behind Waivers

20 Sep

The National Council on Disability (NCD) advices the U.S. government on many areas, including civil rights, diversity, employment, housing and education. The NCD has sent a letter to the U.S. Secretary of Education, Arne Duncan, on the subject of “No Child Left Behind” and waivers which allow schools to “shield” some children from the standards of NCLB.

The full letter can be found here.

NCD Meets with Secretary Duncan on Forthcoming No Child Left Behind Waivers

Following a meeting with U.S. Department of Education Secretary Arne Duncan on Monday, the National Council on Disability (NCD) sent the following letter to the Secretary, outlining policy recommendations for the NCLB waiver process:

September 19, 2011

The Honorable Arne Duncan, Secretary of Education
U.S. Department of Education
400 Maryland Avenue, SW
Washington, DC 20202

Dear Secretary Duncan:

It was a pleasure meeting with you and your senior staff to discuss priorities for students with disabilities within the forthcoming waiver applications for state flexibility under the No Child Left Behind (NCLB) amendments to the Elementary and Secondary Education Act. I’m writing as follow up providing you with a number of policy proposals we are putting forward to ensure that the significant progress that students with disabilities have made under No Child Left Behind is not lost as the Department pursues a waiver process. While the achievement gap between students with and without disabilities is still wide, No Child Left Behind’s disaggregation of data and requirement that schools make Adequate Yearly Progress for each subgroup of students has been a critical driver of reform.

We support the “flexibility for reform” model the Department has put forward in its vision for the waiver process. Having said that, it is imperative that the Department consider the needs of students with disabilities both with regards to what it should and should not provide in flexibility from NCLB’s accountability provisions and what it should require states and school districts to offer in return for the aforementioned flexibility.

With regards to flexibility, we urge the Department to ensure that the following provisions of NCLB are not eliminated or weakened through the waiver process:

Maintain NCLB’s requirement to disaggregate data and ensure a 95% participation rate in state assessments, disaggregated by subgroup population;
Maintain accountability for the Students with Disabilities subgroup and avoid the creation of additional rules allowing states and districts to shield certain populations of students from assessment; and
Maintain NCLB’s teacher quality provisions, particularly the requirement that special education teachers be highly qualified in any content area in which they provide direct instruction;

With regards to reform, we urge the Department to ensure that closing the achievement gap faced by students with disabilities is given sufficient emphasis through incorporating reform provisions which specifically relate to this population. As such, we encourage the Department to consider the following proposals for inclusion in the waiver process:

Eliminate the 2% rule allowing states and school districts to shield 2% of all students from their accountability systems through the use of modified assessments;
Reform the 1% rule to ensure that students who take the alternative assessment must first be assessed for and have access to Augmentative and Alternative Communication (AAC) technology;
Require states applying for waiver flexibility to instruct Local Education Agencies (LEA) to create an additional sub-group for the purposes of disaggregation of data when a sufficient numbers of students within an LEA fall into multiple sub-groups (i.e.: African-American students with disabilities, low-income students with disabilities, etc.);
Require states applying for waiver flexibility to set goals for increasing students with disabilities’ access to the general education classroom (as measured through IDEA State Performance Plan Indicator 5a); and
Require states to increase their use of research-validated educational methodologies, such as Universal Design for Learning and Response to Intervention;

NCLB has been a source of tremendous progress for students with disabilities, and we believe that if properly constructed, the waiver process can drive similar reform. We urge you to ensure that closing the achievement gap for students with disabilities is as great an area of emphasis for the Department as closing the achievement gaps faced by other minority groups. To quote from NCD’s 2008 report The No Child Left Behind Act and the Individuals with Disabilities Act: A Progress Report, “Teachers, administrators, and the community are becoming aware of what students with disabilities are capable of achieving if they are held to high standards and expectations .”

NCD’s Policy and Program Evaluation Committee Chair Ari Ne’eman stands ready to work with you and your staff on these matters. He can be reached at aneeman@ncd.gov or at our office phone number at 202-272-2004. Thank you for your consideration.

Sincerely,

Jonathan M. Young, J.D., Ph.D.
Chairman, National Council on Disability

United States politicians on the campaign trail take up vaccine injury…again

15 Sep

In the last US presidential campaign, prominent candidates made statements about vaccine injury. Specifically autism.

Senator McCain made comments about autism and mercury:

“At a town hall meeting Friday in Texas, Sen. John McCain, R-Ariz., declared that “there’s strong evidence” that thimerosal, a mercury-based preservative that was once in many childhood vaccines, is responsible for the increased diagnoses of autism in the U.S. — a position in stark contrast with the view of the medical establishment.”

Barak Obama made a comment which, without the video to put it in context, seemed to lend support:

“We’ve seen just a skyrocketing autism rate. Some people are suspicious that it’s connected to the vaccines. This person included. The science right now is inconclusive, but we have to research it.” –Barack Obama, Pennsylvania Rally, April 21, 2008.

(“this person” was a person in the audience)

This time it is Michele Bachman. She has made the claim that gardasil (the vaccine against HPV, given to teenage and older women), resulted in “mental retardation”.

Candidate Rick Perry responded to the baseless accusation by Ms. Bachman:

You heard the same arguments about giving our children protections from some of the childhood diseases, and they were, autism was part of that. Now we’ve subsequently found out that was generated and not true.”

As a side note: the Pharyngula blog is reporting that Prof. Steven Miles has put up a $1,000 challenge for proof of Ms. Bachman’s statement.

I am offering $1000 for the name and medical records release of the person who Michele Bachmann says became mentally retarded as a consequence of the HPV. Please share this message.

Ms. Bachman’s comments were just plain wrong. She’d do well to apologize and move on. My own biased suggestion would be for her to move on into discussing some subjects involving the betterment of life for the disabled. This isn’t exactly a big plank in the republican platform but, hey, isn’t this about showing leadership?

‘All is done by Allah’. Understandings of Down syndrome and prenatal testing in Pakistan.

7 Sep

It is very interesting to see how disability is viewed in various cultures. Beyond academic interest, there is much we can all learn from each other. A recent paper looks at Down Syndrome and prenatal testing in Pakistan. The paper is ‘All is done by Allah’. Understandings of Down syndrome and prenatal testing in Pakistan.

To give you an idea of the study, here is the abstract:

Understanding the psychosocial impact of a congenital condition such as Down syndrome on affected individuals and their family requires an understanding of the cultural context in which they are situated. This study carried out in 2008 used Q-Methodology to characterize understandings of Down syndrome (DS) in Pakistan in a sample of health professionals, researchers and parents of children with the condition. Fifty statements originally developed for a UK study and translated into Urdu were Q-sorted by 60 participants. The use of factor analytic techniques identified three independent accounts and qualitative data collected during the Q-sorting exercise supported their interpretation. In two accounts, the ‘will of God’ was central to an understanding of the existence of people with DS although perceptions about the value and quality of life of the affected individual differed significantly between these accounts as did views about the impact on the family. The third account privileged a more ‘scientific worldview’ of DS as a genetic abnormality but also a belief that society can further contribute to disabling those affected. Attitudes towards prenatal testing and termination of pregnancy demonstrated that a belief in the will of Allah was not necessarily associated with a rejection of these technologies. Accounts reflect the religious, cultural and economic context of Pakistan and issues associated with raising a child with a learning disability in that country.

65 people were given cards with a number of questions and asked to sort them into a grid provided:

The method requires participants to consider and respond to a set of statements (the Q-set) using a ranking technique (a Qsort). Responding to the statements allows participants to express their viewpoint on things already written or said about the topic.

Example statements are: “A person with Down Syndrome will always be dependent on others” and “Children with Down Syndrome can achieve a great deal”. How they are sorted is then analyzed.

Some of the participants were removed from analysis. Of those remaining, some were parents and some were professionals:

Five Q-sorts were excluded from the analysis (4 parents, 1 health professional) due to concerns that these individuals had not understood the sorting procedure. The final sample of 60 comprised 26 parents of children with DS (14 mothers and 12 fathers), 28 health professionals/researchers (14 females, 14 males) and 6 female psychologists. The parents of children with DS reported occupations within the following groups: government service, domestic service, tailoring, teaching and ‘business’.

After analysis, the authors grouped the responses into three “accounts” of how Down Syndrome is viewed:

Account 1: a child with DS is ‘the will of God’ and a valued human being
Account 2: a child with DS is ‘the will of god’ but a burden to their family
Account 3: a person with DS is a genetic anomaly in a stigmatizing society

Even though “account 1” is classifies a person with Down Syndrome as “the will of god and a valued human being”:

Almost half of the parents in Account 1 expressed favourable attitudes towards abortion for the condition despite relaying positive experiences with their affected child. In the original UK based study no participant who had a close family member with DS expressed such views (Bryant et al., 2006).

Accounts 1 and 2 are from a mix of parents and professionals. Account 3 is from six professionals (two male doctors, a female doctor, a female psychologist and two women in related professions.)

The authors begin their conclusion with:

The findings of this study support those of previous research, for example, the stigma associated with having a disabled child in a Pakistani community, the co-existence of theological and biomedical explanations for disability, and the rejection of abortion on religious grounds for some, but not all Muslims.

If you will allow me, I will pull a couple of sections from the paper without added comment:

The view expressed by Item 20 (‘To know someone with DS enriches our understanding of what it is to be human’) was endorsed consistently across accounts. Participants’ comments suggested belief in a ‘higher purpose’ for the existence of people with DS; for example, “[It] makes us realize the true worth of being a normal human being” (22: female doctor, Account 1); “It reminds me of the unpredictability that is strongly associated with human life. It teaches the original meaning of what a Man is” (9: female doctor, Account 2); “Because it is something that makes us feel thankful to God” (10: female health professional, Account 3).

and

The origins of the word Islam refer to the act of submitting to the will of God, and a belief in the will of Allah as the determinant of the life-course is commonly held by Muslims (Murata & Chittick, 1994). Most participants in this study, with the exception of some of those exemplifying Account 3, strongly endorsed the item ‘If you have a child with DS it is because God chose you’ although interpretations of the will of God differed by account. Participants in Account 1 believed that Allah ‘sent’ children with DS as a blessing to parents, to be a source of learning and a means to develop a positive acceptance of His will. Participants in Account 2 expressed the view that Allah sent such children as a trial so that parents might learn forbearance and acceptance of God’s will through difficulty and sorrow.

Prof. Paul Shattuck: ASD outcomes in adulthood

2 Sep

Below is a presentation given at the last IACC (Interagency Autism Coordinating Committee) meeting. Prof. Shattuck has done some excellent work in recent years. He’s one of the people looking into the areas I find critical and underserved. If you want to hear about research which can have a real impact on the life of this generation of autistic youth, you should set aside the time to listen to this talk.

Prof. Shattuck is looking at the critical transition from school to adulthood. How well are autistic students making that transition (largely, not so well as it turns out). What are the factors that help make that transition successful? If we don’t look into these questions today the problems will only continue unresolved.


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Interagency Autism Coordinating Committee (IACC) Conference Call

31 Aug

The Interagency Autism Coordinating Committee will hold a conference call on a draft letter to the Secretary of Health and Human Services on issues relating to seclusion and restraint.

The call is September 7, 2011 from 3:00 p.m. to 5:00 p.m. ET.

Please join us for a conference call of the IACC on Wednesday, September 7, 2011 from 3:00 p.m. to 5:00 p.m. ET for a discussion and vote on the draft letter to the Secretary of Health and Human Services on issues related to seclusion and restraint and autism spectrum disorder (ASD).

The conference call will be accessible by the phone number and access code provided below. Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard.

Conference Call Access
USA/Canada Phone Number: 800-369-1673
Access code: 2298100

Individuals who participate using this service 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 above at least seven days prior to the meeting. If you experience any technical problems with the webcast or conference call, please e-mail IACCTechSupport@acclaroresearch.com or call the IACC Technical Support Help Line at 443-680-0098.

Please visit the IACC Events page for the latest information about the meeting, remote access information, the agenda and information about other upcoming IACC events.

Contact Person for this meeting is:

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

Scientific fraud in the UK: The time has come for regulation

3 Aug

In a recent article in the Guardian, Brian Deer poses the question of whether regulation needs to be applied to scientific research. The article, Scientific fraud in the UK: The time has come for regulation, Mr. Deer states:

Fellows of the Royal Society aren’t supposed to shriek. But that’s what one did at a public meeting recently when I leapt onto my hobbyhorse: fraud in science. The establishment don’t want to know. An FRS in the audience – a professor of structural biology – practically vaulted across the room in full cry. What got this guy’s goat was my suggestion that scientists are no more trustworthy than restaurant managers or athletes.

Restaurant kitchens are checked because some of them are dirty. Athletes are drug-tested because some of them cheat. Old people’s homes, hospitals and centres for the disabled are subjected to random inspections. But oh-so-lofty scientists plough on unperturbed by the darker suspicions of our time.

Mr. Deer’s article mentions a just release UK Government report “Peer review in scientific publications” Here is the final paragraph from the summary for that report:

Finally, we found that the integrity of the peer-review process can only ever be as robust as the integrity of the people involved. Ethical and scientific misconduct—such as in the Wakefield case—damages peer review and science as a whole. Although it is not the role of peer review to police research integrity and identify fraud or misconduct, it does, on occasion, identify suspicious cases. While there is guidance in place for journal editors when ethical misconduct is suspected, we found the general oversight of research integrity in the UK to be unsatisfactory. We note that the UK Research Integrity Futures Working Group report recently made sensible recommendations about the way forward for research integrity in the UK, which have not been adopted. We recommend that the Government revisit the recommendation that the UK should have an oversight body for research integrity that provides “advice and support to research employers and assurance to research funders”, across all disciplines. Furthermore, while employers must take responsibility for the integrity of their employees’ research, we recommend that there be an external regulator overseeing research integrity. We also recommend that all UK research institutions have a specific member of staff leading on research integrity.

I find it odd that they are focusing on peer-review, which seems to me to be a narrow field of research integrity. That said, the report is recommending that “an oversight body for research integrity” be formed.

Back to Mr. Deer’s article. He quotes a Dr. David Taylor on why such oversight might not be needed:

“It is important to recognise that in the long term it matters little if published material is inaccurate, incompetent or even fraudulent, since the advance of the scientific canon only uses that material which turns out to fit the gradually emerging jigsaw,” is how Dr David Taylor, a former executive at AstraZeneca, expressed this tenet in a recent submission to the House of Commons science and technology committee, which publishes a report today.

I think that Dr. Taylor is taking a rather idealistic view of research. Yes, there is a self-correcting nature to research. Those results which are wrong will not be replicated and will, over time, fade.

But, how much time does it take for the self-correction? Autism research provides, unfortunately, a great example of the persistence of poor level, even fraudulent, research. For example, the concept of an epidemic caused by vaccines, either through the MMR vaccine or through thimerosal, was promoted by research which ran the gamut from reasonable speculation to outright fraud. One of the prime examples of research fraud which the committee cited in the report is on the MMR/autism hypothesis.

The problem is that while we wait for this “self correction”, real people suffer the consequences. Aside from the mental anguish it has caused, the vaccine/autism epidemic idea has spawned an industry of alternative medicine practitioners and treatments. These treatments run the gamut from worthless/harmless to powerful medicine and potentially dangerous.

Researchers, especially those who are publicly funded and/or publish, hold a public trust. Certainly, researchers hold a trust to use public funds wisely. Unfortunately, published research, even bad published research, is used to promote non-science agendas. The term “tobacco science” gets thrown around a lot, but the fact is that sometimes journal publications are less about reporting results as making a political or business statement. This happens for both “big pharma” and for “little pharma“. The harm from research fraud, or even just heavily biased research, is not limited to medicine. But I would posit that the most harm is done in the area of medical research.

As an American, I will be only an observer in if/how the UK pursues regulation of research integrity. However, the damage from research fraud knows no boundaries. I don’t know if there is an optimal solution which reduces the damage of research fraud through regulation while still promoting the freedom of self-direction for researcher. Is there a need? I’d say yes. Taking the Wakefield affair as an example, there may be few examples of really damaging fraudulent research, but the damage of even these few examples can be very great.

Congress delays hearing on autism bill

2 Aug

The Santa Monica Dispatch is reporting that committee hearings on the Combating Autism Reauthorization Act have been pushed off to September:

e U.S. Senate Health, Education, Labor and Pensions (HELP) Committee has just announced that it is postponing a meeting on the Combating Autism Reauthorization Act (CARA) until September 7. The meeting had been scheduled for this Wednesday August 3, but Congress is apparently so exhausted by its represensible behavior during the debt ceiling debate that it’s giving itself a five-week recess. With pay.

http://www.santamonicadispatch.com/2011/08/congress-delays-hearing-in-autism-bill/

The Combating Autism Act reinstated the Interagency Autism Coordinating Committee (IACC) which creates a strategic plan for autism research in the US. More importantly, the CAA authorizes congress to appropriate money for autism specific research.

The CAA is set to end (sunset) on September 30. This leaves very little time from committee hearing to any potential vote by the legislature.

My comment to the IACC

19 Jul

The IACC seeks public comment, both in-person and in writing. Below is my comment submitted for today’s meeting. I didn’t get this out until late, so it may not be included with the packets for the IACC members today, but it concerns an issue I find very important:

Dear Interagency Autism Coordinating Committee members:

I would like to thank the IACC members for their work over the recent years. It is my sincere hope that the Combating Autism Act will be reauthorized, allowing this committee to continue to guide autism research goals.

One goal I would hope that would be addressed in future Strategic Plans is the need for adequate medical care for autistics. It is my belief that the current medical system in the U.S. does not incentivize doctors for the care that is required by the disabled. One doctor told me that 70% or more of the information needed to come to a preliminary diagnosis comes from direct communication with the patient. It seems highly likely that individuals with difficulties in communication and sensory issues will require additional effort on the part of physicians. And, yet, insurance assumes that an office visit will be the same time for an autistic individual as for a non-autistic individual.

The questions that I would like to see addressed are straightforward. First, what is the appropriate amount of time doctors need to take to adequately address the needs of their autistic patients? This information could be used to allow for an additional or a different billing code for doctors to use with this population. Second, does the current system disincentivize doctors from taking on disabled patients in general, and autistic patients in specific?

A recent paper gives a view of the importance of these issues: Parenting aggravation and autism spectrum disorders: 2007 National Survey of Children’s Health. Parents without a medical home show much higher levels of aggravation. Addressing this one area could provide much benefit to not only the autistic children, but to the parents as well.

Again, I thank you for your time serving the needs of autistics.

Respectfully submitted