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Autism Prevalence: More Affected or More Detected?

29 Mar

Tom Insel, director of the U.S. National Institute of Mental Health and Chair of the Interagency Autism Coordinating Committee has published a blog article coinciding with the CDC announcement of 1 in 88 estimated prevalence.

As a government publication, I feel it is OK to copy it here in total, but you are encouraged to read it on the NIMH website: Autism Prevalence: More Affected or More Detected?

Autism is always surprising. Earlier today, the CDC released new numbers from their ongoing surveillance of autism prevalence, the Autism and Developmental Disability Monitoring (ADDM) Network. What was once considered a rare disorder is now reported as affecting 1 in 88 children, 1 in 54 boys. These new numbers, up 78 percent from 2002 and 23 percent from 2006, raise immediate questions. Are more children affected or more detected? Does the increase reflect a growing problem, or do these new numbers reflect an improvement in our ability to diagnose and serve those affected?

These new data do not answer these questions. The CDC surveillance project focuses on 8-year-olds identified in 2008; that is, children who were born in 2000. By definition, autism begins before age 3, so a focus on 8-year-olds should capture anyone who was identified and still has a diagnosis. The prevalence numbers are based on a standardized assessment of descriptions of behaviors culled from administrative or health records from select communities, not on standardized diagnostic interviews in the general population. The strength of this approach is its wide reach, allowing a comparison across 14 states. The CDC reports a four-fold variation across sites. These new results, as with those from other records-based surveillance systems, do not answer questions related to why the identified prevalence of autism has changed over time.

Other research suggests a complicated picture. A total population study of all 7–12-year-olds in a town in South Korea (more than 55,000 children) used standardized diagnostic instruments for children who screened positive and reported a prevalence of 2.64 percent.1 That is 1 in 38 children! There is no reason to expect that this prevalence is unique to this community. To be sure, two-thirds of these children had never received a diagnosis of autism spectrum disorder (ASD), meaning that the identified prevalence was closer to 1 percent or one in 100, roughly the same prevalence reported in the United States. From this perspective, the increase reported by the CDC might mean we are better at detecting children who meet criteria for ASD, but potentially we still are only halfway to the actual prevalence in the general population. Indeed, the biggest increase in the CDC surveillance report was in Hispanic and African American children, groups which previously had low rates of detection.

But can we be certain that more children are not affected? Data from the Developmental Disability Services registry in California demonstrates a 12-fold increase in the number of children receiving services for autism over the past 20 years, with a continuing rise recently. But these data, while dramatic, cannot rule out increased use of the diagnosis. Bearman and colleagues who have studied the California trends suggest that only about 26 percent of this increase can be explained by diagnostic substitution, especially for the most severe cases — children with intellectual deficits — which may not have been identified as autism in an earlier era. Another fraction can be attributed to better ascertainment or detection especially for children at the less severe end of the spectrum. Together these factors explain only a part of the linear increase observed in the California registry. In the absence of other explanations they and others suggest that a real increase is quite likely.2, 3, 4

Which makes a recent report from England especially surprising. In a careful epidemiological study based on a national sample (n = 7,461 adults) from 2007, Brugha and colleagues did careful diagnostic assessments based on standardized interviews. They found that familiar rate of about 1 percent in adults across the entire age range without a significant reduction in the older part of the sample as one would expect if the prevalence had increased in recent years.5

This takes us back to the central question: has the number of children with ASD increased or not? Total population epidemiological studies suggest much or all of the increase is due to better and wider detection. Studies of administrative and services data suggest that better detection cannot fully explain the profound and continuing increase. Are we seeing more affected or more detected? The question is vitally important, but there is not one, simple answer just as autism is not a single, simple disorder.

If there is an increase in the number affected, then we need to find the causal factors to bend the curve. Analogous increases in food allergies, asthma, and Type 1 diabetes have provoked an aggressive search for environmental causes. If the number of children with ASD has not changed, but we are diagnosing and serving 12-fold more of them over the past two decades, then we need to focus on better diagnosis and treatments rather than looking for new environmental factors driving the precipitous increase.

Science can resolve this dilemma, but the methods to examine this question as well as the answers will be complex. While it is never possible to go back in time, longitudinal population based studies and even careful retrospective studies can determine if more children are affected and if the nature of the disorder is changing over time. The changes in prevalence of other developmental disorders, measured with biomarkers (Type 1 diabetes) or emergency room visits (food allergies), appear to be true increases in the number of children affected. As diagnostic changes and ascertainment fail to explain the majority of the increase in autism prevalence, it seems prudent to assume that there are indeed more children affected and continue an aggressive search for causes while striving to improve detection, treatments, and services. Our working assumption is that there are both more children affected and more detected.

References

1Kim YS, Leventhal BL, Koh YJ, Fombonne E, Laska E, Lim EC, Cheon KA, Kim SJ, Kim YK, Lee H, Song DH, Grinker RR. Prevalence of autism spectrum disorders in a total population sample. Am J Psychiatry. 2011 Sep;168(9):904-12. Epub 2011 May 9. PubMed PMID: 21558103.
2King M, Bearman P. Diagnostic change and the increased prevalence of autism. Int J Epidemiol. 2009 Oct;38(5):1224-34. Epub 2009 Sep 7. PubMed PMID: 19737791; PubMed Central PMCID: PMC2800781.
3Keyes KM, Susser E, Cheslack-Postava K, Fountain C, Liu K, Bearman PS. Cohort effects explain the increase in autism diagnosis among children born from 1992 to 2003 in California. Int J Epidemiol. 2011 Dec 7. [Epub ahead of print] PubMed PMID: 22253308.
4Bresnahan M, Li G, Susser E. Hidden in plain sight. Int J Epidemiol. 2009 Oct;38(5):1172-4. PubMed PMID: 19797336.
5Brugha TS, McManus S, Bankart J, Scott F, Purdon S, Smith J, Bebbington P, Jenkins R, Meltzer H. Epidemiology of autism spectrum disorders in adults in the community in England. Arch Gen Psychiatry. 2011 May;68(5):459-65. PubMed PMID: 21536975.

President Obama Tells The Arc, Disability Community “I’ve Got Your Back”

20 Feb

Barack Obama, President of the United States, made a surprise visit to a White House Community Leaders Briefing for The Arc.

Here is the press release on the event from The Arc:

Washington, DC – Today, 150 leaders of The Arc from across the country met with a variety of senior White House officials at a Community Leaders Briefing to ask questions and discuss issues facing people with intellectual and developmental disabilities (I/DD). The session, held just for The Arc, included an unannounced visit from President Barack Obama. The President spoke of his commitment to people with disabilities saying, “I’ve got your back.”

This surprise appearance by the President of the United States was the highlight of the day for many attendees, along with the opportunity to interact with high level government officials about how they can support people with I/DD to live in the community. Over the course of the day, leaders of chapters of The Arc were briefed on topics ranging from Medicaid to education to community living and employment for people with I/DD. Many of the speakers, including President Obama, referenced the impact advocates made during budget negotiations to protect Medicaid, and encouraged The Arc and others to continue these efforts.

Another unannounced speaker was White House Chief of Staff Jack Lew, who reiterated the President’s opposition to turning Medicaid into a block grant. He also took questions from the audience, including Barbara Coppens, a member of the national board of directors of The Arc and a self-advocate who took the opportunity to speak about the importance of self-advocacy by people with disabilities.

“I tell other self-advocates – you’ve got to get out there and advocate for yourself because you can’t rely on other people to make change for you,” said Coppens to Chief of Staff Jack Lew.

The day was organized by Kareem Dale, Special Assistant to the President for Disability Policy, who kicked off the agenda by welcoming guests and speaking about employment issues. The Arc heard from Cecilia Muñoz, Director of the White House Domestic Policy Council, who spoke of their commitment to providing services and supports to all in need. Other speakers included Carol Galante, Acting Assistant Secretary – Federal Housing Administration Commissioner, Department of Housing and Urban Development; Cindy Mann, Deputy Administrator, Centers for Medicare and Medicaid Services; Robert Gordon, Executive Associate Director, Office of Management and Budget; and Tom Perez, Assistant Attorney General for Civil Rights, Department of Justice.

Assistant Attorney General Perez discussed the recent Department of Justice settlement with the Commonwealth of Virginia regarding people with I/DD who live in any of its five institutions who could live in the community. He spoke about the bipartisan work going on across the country to implement the Olmstead decision, which states that under the Americans with Disabilities Act (ADA), unnecessarily institutionalizing a person with a disability who, with proper support, is capable of and who wants to live in the community can amount to discrimination.

After a tour of the East Wing of the White House, advocates from The Arc took part in policy breakout sessions that allowed for more detailed discussions on certain issue areas, like community living, family caregiving, education, and Medicaid. The purpose of these briefings was to allow White House and administration officials to engage in a dialogue with leaders of The Arc about how government policies affect the lives of people with I/DD and impact their ability to live full, independent lives. Given the Department of Education’s announcement yesterday to allow ten states waivers from some of the No Child Left Behind law requirements, the education session with Alexa Posny, Assistant Secretary, Office of Special Education and Rehabilitation Services, was incredibly timely, as were meetings with representatives from the Department of Health and Human Services, Department of Justice, Administration on Aging, and the White House Domestic Policy Council.

“This unique, face-to-face opportunity to speak directly to people in positions to make change from within the government allowed leaders of The Arc to make the voices of the millions of people with I/DD heard at the White House. Our network seized on this opportunity, and we left the White House feeling a sense of accomplishment and inspiration for continued advocacy that we will take back to our communities to help grow our movement,” said Peter V. Berns, CEO of The Arc.

Mother Jones: Rep. Dan Burton’s Legacy: Lots of Sick Kids

1 Feb

Dan Burton, representative to the U.S. House of Representatives from Indiana announced today he would not seek re-election this year. Mother Jones has an article to mark the end of Dan Burton’s career in congress: Rep. Dan Burton’s Legacy: Lots of Sick Kids. The link says a lot “rep-dan-burton-goodbye-and-good-riddance”.

Stephanie Mencimer of Mother Jones starts out:

So Rep. Dan Burton (R-Ind.) is finally retiring, after two decades in Congress. He’s got a notable record of craziness, having doggedly pursued President Bill Clinton during the Monica Lewinsky scandal while knowing full well he’d had an affair himself and even fathered a child out of wedlock. He famously claimed to have shot up a “head-like object” (likely a melon or a pumpkin) to try to re-create the alleged “murder” of former Clinton deputy White House counsel Vince Foster, who committed suicide. But Burton doesn’t get enough credit for what may be his lasting legacy: helping turn Americans away from life-saving childhood vaccines.

Representative Burton has an autistic grandchild. Mr. Burton is of the belief that vaccines were causal in that autism. If you’ve read David Kirby’s book, “Evidence of Harm, Mercury in Vaccines and the Autism Epidemic: A Medical” you know that Rep. Burton is a major figure in that narrative.

Rep Burton helped promote Andrew Wakefield’s ideas, including a hearing held in 2000. Mr. Wakefield’s testimony is not exactly what I would call accurate. As is now well known, Mr. Wakefield was financially supported by attorneys seeking to prove a link between the MMR vaccine and autism. When Rep. Burton asked him about financial support, here’s how Mr. Wakefield responded:

Mr. Burton. Who funded your study, Dr. Wakefield?
Dr. Wakefield. We did. We have a small charitable
contribution, but—-
Mr. Burton. A charitable organization did; I see.
Dr. Wakefield. We found it a little difficult to get
funding—-

Mr. Burton cut Mr. Wakefield off at this point, addressing another speaker at the hearing. “A charitable contribution” is a rather odd way to describe money from attorneys. Mr. Burton held at least six hearings on vaccines. That is not a problem. However, the evidence was going from weak to strongly against him over the years.

Mr. Burton has thankfully been more quiet on the issue in his recent years in office. Still, I’m with Mother Jones on this. Good Bye and Good Riddance.

Newt Gingrich, Autism Advocate

18 Jan

2012 is a presidential election year in the United States. With the campaigns comes the courting of voters. Newt Gingich, Republican Hopeful, has posted an article to his site: Newt Gingrich, Autism Advocate. It’s an excerpt from a Tea Party website article.

I’d love to take the time to go through Mr. Gingrich’s voting record on disability issues. The Republican Party has not always been the best ally from what I’ve seen. Should Mr. Gingrich move up in the ranking (he’s about 20 points behind Mitt Romney at the moment) perhaps I’ll take that time.

If you recall, 4 years ago the candidates courted the “autism vote” even to the point of thinking that we are all behind the failed vaccine-epidemic model of causation. Both Mr. Obama and Mr. McCain made statements on the subject. This campaign season has already seen the departure of Michele Bachmann, whose unsupported (“over the top” according to Time Magazine) statements on Gardasail were credited with contributing to her decline in the polls.

Epilepsy Foundation Touching Lives fundraiser

15 Dec

Below is a letter from the Epilepsy Foundation discussing their Fundraiser.

I know you are extra special. You have compassion for people with epilepsy. You’ve shown it through your support of the Epilepy Foundation. Thank you so much.

I want to tell you about another way you can touch even more lives this holiday season. You can make a donation in honor or memory of a loved one.

It’s a gift you’ll feel good about giving. It’s a gift that will help us find a cure…And until that day, make living with epilepsy a little bit easier.

We have several beautiful cards for you to choose from that we can send to your honoree or the person you choose. You can see some of the cards below.

20111214-221326.jpg

Click here to make a gift in honor of a loved one.

It will make the perfect gift for someone special. It will touch so many lives and hearts.

Thank you and best wishes throughout this season of joy and giving.

Warm Regards,

Ellen L. Woods
Vice President, Development

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

Judge Rotenberg Center lobbies against seclusion and restraint bill

14 Nov

The Judge Rotenberg Center (JRC) is a special needs school which employs controversial behavior modification techiniques, including electric shock. The JRC has been the focus of much criticism for this practice, which is illegal in many (possibly most) states. Even its home state of Massachusetts has made, and continues to make, efforts to curb this practice.

In Judge Rotenberg Center lobbies D.C. against bill, the Canton Journal (a local newspaper for the JRC) notes that the JRC is lobbying to stop state legislation and federal legislation:

As the Judge Rotenberg Center in Canton gears up to oppose new state regulations that limit the use of controversial shock treatment, the school is also covering its bases in Washington.

So far this year, the Judge Rotenberg Center has paid $16,500 to Malkin & Ross, a New York-based lobbying firm, according to recent lobbying reports filed with the secretary of the Senate.

This lobbying effort includes targeting a seclusion and restraint bill:

A bill filed by Rep. George Miller, D-Calif., now the senior Democrat on the House Education and the Workforce Committee, would ban the use of physical restraint and seclusion in schools. The bill is co-sponsored by 27 Democrats, including Rep. John Tierney, D-Salem, and one Republican.

Seclusion and restraint legislation has been a major focus of autism organizations as diverse as the National Autism Association and the Autistic Self Advocacy Network.

The Miller seclusion and restraint bill, House Resolution 1381, includes language calling for children to have the right to be “Free from physical or mental abuse, aversive behavioral interventions that compromise health and safety…”

(2) Behavioral interventions for children must promote the right of all children to be treated with dignity. All children have the right to be free from physical or mental abuse, aversive behavioral interventions that compromise health and safety, and any physical restraint or seclusion imposed solely for purposes of discipline or convenience.

and specifically call for the prohibition of restraints and aversives that “compromise health and safety”:

(1) School personnel shall be prohibited from imposing on any student the following:

(A) Mechanical restraints.

(B) Chemical restraints.

(C) Physical restraint or physical escort that restricts breathing.

(D) Aversive behavioral interventions that compromise health and safety.

I guess rather than argue that their methods do not “compromise health and safety”, JRC would prefer to quash this bill. Unfortunately, JRC may get their wish. H.R. 1381 appears to be stalled, with no actions taken since it was referred to committee in March.

Combating Autism Reauthorization Act signed by President Obama

3 Oct

The commitment to autism research by the people of the United States will continue at a high level. The Combating Autism Act has been reauthorized following the passage of the Combating Autism Reauthorization Act by the legislature and President Obama’s signing it into law.

From the White House Blog, this post by Micahel Strautmanis:

Every single day, I am proud and awed to be working for our President. But, some days simply take the cake. Just a few short months ago, I had a couple of those days. On April 1st, President Obama issued the first ever Presidential Proclamation to mark World Autism Awareness Day. Later that month, I had another special moment when Valerie Jarrett and Health and Human Services Secretary Kathleen Sebelius announced that the President and his administration fully supported reauthorization of the Combating Autism Act (CAA). As a father of a child on the autism spectrum, these were extraordinarily meaningful moments to me.

Today, President Obama signed into law the reauthorization of the CAA. I was once again reminded of the honor that it is to be working for a President who gets it — he knows that persons on the autism spectrum are at the heart of this issue.

I find the reauthorization and the entire process quite interesting. There wasn’t the testimony involved in the first Combating Autism Act. While there was certainly a push to get the reauthorization passed, there was a lack support from many organizations, from parent-led groups pushing vaccine causation to self-advocate groups. There doesn’t appear to be much, if any, discussion on vaccines. The CAA in 2006 even had some senators mention vaccines in the congressional record while discussing the passing of the act.

And this is something that intrigues me. I’ve always worried that the CAA was passed, at least in part, based on the perception that perhaps vaccines had a role in autism prevalence. Perhaps some legislative guilt at play. I worried that in 2011, with so much more known about the fact that MMR and thimerosal did not cause an autism epidemic, that congress might let autism research drop to a lower priority. The CAA had to stand on what was accomplished and what the prospects looked like for future research. In many ways, that’s a tough sell. Research doesn’t happen overnight. Even in 5 years. But, congress and the president are supporting the effort into the future. In these economic times, and in an election year, this was not a trivial accomplishment.

The Interagency Autism Coordinating Committee (IACC) will continue into the future. Congress is authorized to appropriate funds into the future.

Combating Autism Reauthorization Act Passed by Senate and House

28 Sep

The Combating Autism Reauthorization Act has been passed by both houses of the US Legislature. President Obama is expected to sign this into law. The announcement from the Office of Autism Research Coordination is below.

Late Monday night, September 26, 2011, the Senate passed The Combating Autism Reauthorization Act (CARA) by voice vote. The bill was passed by the House of Representatives last week. The bill is now en route to the White House to be signed into law by President Obama. The reauthorization of this legislation will allow the continuation of the Interagency Autism Coordinating Committee (IACC) and several other important Federal autism programs for three years, until September 30, 2014.

The Office of Autism Research Coordination looks forward to continuing to partner with Federal agencies and private organizations to facilitate the activities of the IACC and serve the autism community

Combating Autism Reauthorization Act Stalled in Senate

22 Sep

The Combating Autism Reauthorization Act recently passed in the U.S. House of Representatives. The next steps are approval in the Senate and, should that happen, signing by the President. Mr. Obama has indicated that he will sign. The senate, however, is a different story.

Disability Scoop discusses this in Senate Republicans Move To Derail Autism Act.

Just hours before, however, a clash on the Senate floor revealed fresh opposition in Congress to the measure. When the bill’s sponsor, Sen. Robert Menendez, D-N.J., called for his colleagues to give unanimous consent to the autism legislation, a group of Republican senators objected.

“All of us who object support autism research… but it makes absolutely no sense for us from where we sit to try to play scientist and physician,” said Sen. Jim DeMint, R-S.C.

It’s politics, so I don’t expect the short sound-bytes to be logical. The CARA doesn’t make legislature “play scientist and physician”. It does set up an infrastructure to plan for the research priorities, using researchers and stakeholders for input.

Another paragraph from Disability Scoop:

In addition to opposing condition-specific legislation, DeMint, who was joined by Sen. Tom Coburn, R-Okla., in speaking against the bill, said the measure was not necessary in order to continue current research programs which are funded under other appropriations bills.

Again, let’s consider what actually happens. The Combating Autism Act, and the re-authorization, don’t appropriate funds. They authorize the appropriations. Simply put, they are a plan for what will be authorized. But the Act doesn’t commit congress to make the appropriations. Consider it a statement of intent. A promise.

The Washington Times has a story: Standoff threatens autism research funding. This includes a statement by Senator Tom Coburn:

“What we are opposed to is tying the hands of the researchers and the directors at National Institutes of Health and telling them what they should do and how they should do it.”

I find this odd on two counts. Again, the Act does not tie the hands of people at NIH other than in the formation of the IACC to create a strategic plan and advise the Secretary of Health and Human Services.

As to telling the NIH what to do, what areas to focus upon. Well, there’s the National Cancer Institute, the National Eye Institute, the National Heart Lung and Blood Institute…you get the idea. The NIH has already created specific focus areas. The Combating Autism Act is not out of place in the way the NIH is run by congress.

The Times quotes Rep. Michael F. Doyle:

Mr. Doyle said he spoke with two senators who had concerns about the bill and that he “did not have an indication that there was an effort to block this thing permanently.”

If accurate, this places the current stall in the category of “politics”.

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