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Saturday, May 31, 2014

Elliot Rodger Was Not Autistic

Some press reports suggested that alleged Isla Vista killer Elliot Rodger had a diagnosis of ASD.  He did not. Emily Willingham writes at Forbes:
Just after the shootings, the family’s attorney made a statement claiming that Rodger had a diagnosis of Asperger’s. However, he backtracked on that a day later, saying instead that Rodger “had not been diagnosed with Asperger’s.”
Very little about what Rodger wrote and did suggests an autism spectrum disorder, including the fact that he had apparently remarkable executive function and social dissembling skills, which he demonstrated in deceiving the deputies dispatched to his apartment in one of the key turning points of this tragedy. While not all autistic people are the same, executive function and an ability to dissemble are more typically areas of deficit–if an inability to dissemble can be considered a deficit, which in many social situations, it probably is.
 I’ve already tweeted and posted about autism and violence extensively. The bottom line is that autistic people are far less likely than non-autistic people to engage in criminal activity of any kind.
Some news outlets reported the attorney’s original assertion but then rewrote their stories to remove it. That is appropriate because reporting second-hand information about any mental health (or in the case of autism, neurobiological) condition is not in keeping with current journalistic guidelines. In fact, the AP updated those guidelines in the wake of the rampant speculation and misreporting about the Sandy Hook shooter in 2012.
 Enrico Gnaulati writes at The Atlantic
Making the case for the inappropriateness of an autism spectrum disorder diagnosis in Elliott [sic] Rodger’s case is critically important to address the public misconception that autistic individuals have an unusually high potential for violence. One in 68 children currently has a diagnosis of ASD, so the potential for misplaced fear is great. In fact, the Interagency Autism Coordinating Committee of the U.S. Department of Health and Human Services indicates that people afflicted with autism spectrum disorder are less prone to engage in any criminal behavior compared with the general population.ASD individuals do not obsess over Hugo Boss and Armani threads, BMWs, winning the lottery, and insisting that one's mother marry a multi-millionaire.
Nor, for that matter, do autistic individuals typically hyper-focus on their appearance, crave admiration and sex, act as if they are consumed by envy and the need for revenge, desperately try to undo shame and humiliation by shaming and humiliating others, or harbor grandiose fantasies of fame and fortune—all of which percolated in the mind of Rodger. We are squarely in the realm of pathological narcissism here.

Friday, May 30, 2014

A Van for Autism Screening

In Philadelphia, KYW-TV reports:
Officials at Drexel University unveil their brand new mobile REACH (Resources and Education for Autism and Community Health) Autism van. You may soon see this van in a neighborhood near you.
Director of Outreach for the AJ Drexel Autism institute Jennifer Plumb explains how the staffed van can help those who have yet to be diagnosed.
“One of our focuses is going to be doing screenings in the community, which is a huge need for individuals on spectrum.”
Clinical Director for the AJ Drexel Autism Institure James Connell says it’s critical to bring the care to the community.
“They can’t take the day off, they may have three or four children. Putting them on a bus, getting them to the subway and travelling down to the University is complicated for many families. So, we want to work with our governmental community partners to bring these settings out to them.”
Connell says once the children are diagnosed, the family can take the assessment they receive to ensure their loved one receives the proper services, including an IEP or Individual Education Plan.

Thursday, May 29, 2014

Measles on the Rise

A release from the Centers for Disease Control and Prevention (CDC)
Two hundred and eighty-eight cases of measles were reported to the Centers for Disease Control and Prevention (CDC) in the United States between Jan. 1 and May 23, 2014. This is the largest number of measles cases in the United States reported in the first five months of a year since 1994. Nearly all of the measles cases this year have been associated with international travel by unvaccinated people.
“The current increase in measles cases is being driven by unvaccinated people, primarily U.S. residents, who got measles in other countries, brought the virus back to the United States and spread to others in communities where many people are not vaccinated,” said Dr. Anne Schuchat, assistant surgeon general and director of CDC’s National Center for Immunizations and Respiratory Diseases. “Many of the clusters in the U.S. began following travel to the Philippines where a large outbreak has been occurring since October 2013.”
Of the 288 cases, 280 (97 percent) were associated with importations from at least 18 countries. More than one in seven cases has led to hospitalization. Ninety percent of all measles cases in the United States were in people who were not vaccinated or whose vaccination status was unknown. Among the U.S. residents who were not vaccinated, 85 percent were religious, philosophical or personal reasons.
 Graph: Measles, U.S., 2001-2014: Cumulative Number by Month of Rash Onset.

Dairy and Autism?

The list of purported causes of autism is long. People for the Ethical Treatment of Animals (PETA) claims that there is a link between dairy and autism. Steven Novella writes at Science-Based Medicine:
PETA provides us with a nice example of how having an ideological agenda can motivate an individual or a group to embrace dubious science. In an article currently on their website, and making the rounds in social media (this is repeating a claim from at least 2008, but the current article is undated), the group warns: Got Autism? Learn About the Link Between Dairy Products and the Disease
There are some anecdotes about the gluten-free, casein-free diet.
Such uncontrolled observations need to be confirmed by blinded observations. These studies have been done for both gluten-free and casein-free diets. A 2008 Cochrane review of these studies concluded:
Current evidence for efficacy of these diets is poor. Large scale, good quality randomised controlled trials are needed.
A more recent review from April 2014 came to a similar conclusion:
We observed that the evidence on this topic is currently limited and weak.
The pattern of evidence reveals that the methodologically poor studies, ones that are liable to confirmation bias, show some effect, but the properly blinded studies tend to show no effect. For example, a 2010 study (although small) observed children with autism on a gluten-free and casein-free diet, and then challenged them with either gluten, casein, or placebo in a blinded manner. There was no difference in behavior observed. A recent 2014 study also showed no association between dairy and behavior in autism.

Wednesday, May 28, 2014

CARA Controversy

Elise Viebeck reports at The Hill:
House lawmakers took a step toward moving a landmark autism-fighting law following a government investigation found that most federal autism research has the potential to be duplicative.
The Energy and Commerce Subcommittee on Health approved an amendment Wednesday that would require the Health and Human Services secretary to designate a deputy to oversee federal autism research and services.
The official would help coordinate anti-autism activities across federal agencies and ensure the projects "are not unnecessarily duplicative," according to the amendment.
The language comes after the Government Accountability Office found last year that 84 percent of autism research projects under current law have the potential to cover each other's ground.

Lawmakers from both parties praised the amendment and predicted it would improve existing programs.
Last week, she reported on  opposition from the Autism Policy Reform Coalition (APRC) is against the bill, arguing a drastic overhaul is needed in order for the money to be used effectively.
"[The rise in autism] is nothing short of astronomical, and I would say, cataclysmic," said Craig Snyder, a longtime autism lobbyist and chief spokesman for the APRC.

Snyder’s group is taking a hard line, arguing it would be better for lawmakers to let the autism act expire on Sept. 30 rather than continuing it in its current form.
"We believe it is better for the country to face the end of these programs and to have a serious dialogue about what went wrong than to put another seal of approval on bad policy," Snyder said.

Legislation from Menendez and Enzi is expected to include several of the reform coalition’s top priorities, Snyder said.

First, Snyder’s group wants to centralize federal autism research within a new office at the NIH modeled on the Office of AIDS Research.

The office would have its own budget and direct scientific work about autism in line with a strategic plan, shifting away from the current model of organic studies funded out of general NIH accounts.

Snyder argued that federal research on autism is overly concerned with genetics at the expense of exploring possible environmental risk factors and ways of treating patients.

Other agencies would also see big changes under the APRC plan.

The CDC, for example, would be required to revamp its autism prevalence survey and conduct it every year instead of every two years.

The Health Resources and Services Administration would be tasked with creating clinical guidelines to ensure that the appropriate clinician treats someone with severe autism during a medical emergency.

And finally, the APRC would create a new body to coordinate autism policy across federal agencies, similar to the White House Office of National Drug Control Policy.
ASAN opposes the bill:
1) H.R. 4631 continues to use language offensive to Autistic people and our allies. We don’t want to be “combated” – we want to be supported and respected. Despite numerous complaints by the Autistic community, the legislation continues to use disrespectful and offensive language. This has to change.
2) H.R. 4631 adds four congressionally appointed members to the Inter-Agency Autism Coordinating Committee, politicizing the IACC instead of letting it focus on analyzing autism research and policy from an objective perspective.
3) H.R. 4631 fails to require additional self-advocate representation on the IACC. Shouldn’t a government advisory committee about autism require more than one autistic representative on the committee? Tell Congress that they shouldn’t be acting about us, without us.

Tuesday, May 27, 2014

Legislation on Sheltered Workshops

Sheltered workshops have fallen into disrepute, and lawmakers want alternatives. Joy Resmovits writes at The Huffington Post:
On Wednesday, Sens. Tom Harkin (D-Iowa), Patty Murray (D-Wash.) and Lamar Alexander (R-Tenn.), along with Reps. John Kline (R-Minn.), Virginia Foxx (R-N.C.) and George Miller (D-Calif.), announced a sweeping bipartisan, bicameral deal that was long in the making. The bill aims to modernize the 1998 law, which oversees $3 billion in job training programs, by eliminating 15 programs and creating universal performance metrics. Many expect it to advance.
For students with special needs in particular, the bill aims to make states more responsible for making sure those students graduate into jobs that allow them to make minimum wage and work alongside adults who have no disabilities. This move extends the often-controversial concept of inclusion in public schools into the workforce. Under the 1975 Individuals with Disabilities Education Act, another Harkin initiative [sic], students with special needs must be given a "free and appropriate public education" in the "least restrictive environment."
But unlike IDEA, which covers students with special needs until they turn 21, workforce training programs for individuals with disabilities aren't entitlements, meaning that there are far more students who are eligible than receive the service, known as Vocational Rehabilitation.

Monday, May 26, 2014

More on the Isla Vista Shooting

Elliot Rodger, the alleged Isla Vista shooter, reportedly had Asperger's. From Marketwatch:
Dr. Daniel Son, a Los Angeles psychiatrist, says Asperger’s actually does not exist as an official diagnosis among mental health professionals anymore, though it still is a commonly used term. He says as of a year ago, it now is simply considered part of the autism spectrum, and most who had been diagnosed with Asperger’s are thought to be high functioning and able to live relatively normal lives.
Son, who treats a number of young autism patients, says that obsessive behavior can result from the disease and patients can become fixated on certain issues. But other factors usually come into play when behavior becomes overwhelmingly violent.
“It’s really more associated with a troubled upbringing rather than the autism,” Son said.
Rodger’s parents split when Elliot was young and his father, Peter, in the film business and an assistant director on “The Hunger Games,” traveled extensively as part of his career.
Meanwhile, Lanza is thought to have possibly suffered from schizophrenia in addition to his Asperger’s. Academics said at the time that Lanza’s condition probably did not lead to his violent behavior, and Lanza’s father told Time Magazine that it shouldn’t be blamed for his son’s actions.
Lanza’s parents split when he was a teenager and his mother was a gun aficionado, who had a number of weapons at her home where Adam lived. Lanza’s father is a corporate executive.
But a life of privilege may not be to blame either, according to one professor at theUniversity of Southern California who was diagnosed with Asperger’s, Lars Perner. Perner told a USC publication recently that his well-to-do family may have had more members with autism, but it was hard to tell because many could afford to be eccentric. He wasn’t diagnosed until he was 31, he said.
“Where I come from, you could afford to be strange,” Perner told the publication. “I shudder to think what would have happened to me if I had come from a less privileged background.”

Sunday, May 25, 2014

Another Killing

Rodger was being treated by multiple therapists and was a student at Santa Barbara City College, said family lawyer Alan Schifman.
Schifman said in recent weeks that Rodger’s parents were concerned for their son's well being and reported his disturbing YouTube videos to police, which lead to an investigation. According to Schifman, police interviewed Rodger and found him to be “polite and kind.” He did not specify which law enforcement division conducted the interview.
A social worker also contacted police about Rodger last week, said Schifman.
Schifman said Rodger was diagnosed as being a high-functioning patient with Asperger syndrome and had trouble making friends.
It bears repeating:  there is no link between violence and any form of autism -- except to the extent that autistic people are often crime victims.

Saturday, May 24, 2014

WHO on Disability and Autism

A release from the World Health Organization:
The World Health Assembly continued progress Friday, approving plans to better incorporate palliative care, expand inclusion of the needs of those affected by autism, improve access to health care for those with disabilities, better integrate the use of traditional medicine and raise awareness of psoriasis.
Disability action plan
A new WHO global disability action plan 2014–2021 aims to improve the health and quality of life of the one billion people around the world with disabilities by improving their access to health care and creating new and strengthening existing services and technologies that help them acquire or restore skills and functions. It also aims to strengthen data and research.
People with disabilities have the same general health care needs as others, but are three times more likely to be denied health care and four times more likely to be treated badly in health facilities. One in seven people worldwide has a disability. As people live longer and chronic diseases increase, more people are likely to develop disabilities. Road traffic crashes, falls, violence, natural disasters and conflict, unhealthy diet and substance abuse can also lead to disability.
Autism spectrum disorders
The Health Assembly urged Member States to include the needs of individuals affected by autism spectrum and other developmental disorders in policies and programmes related to child and adolescent health and development and mental health. This means increasing the capacity of health and social care systems to provide services for individuals with autism spectrum disorders and for their families and shifting the focus of care from long-stay health facilities towards non-residential services in the community. It also means improving health surveillance systems to capture data on autism spectrum disorders and ensuring countries are better able to diagnose and treat autism spectrum disorders.
The resolution highlights the need for the WHO Secretariat to help strengthen countries’ capacities to address autism spectrum and other developmental disorders; facilitate resource mobilization; engage with autism-related networks; and monitor progress. All efforts will be conducted in alignment with the WHO Mental health action plan 2013–2020.
Autism spectrum disorders comprise a range of development disorders which include autism, childhood disintegrative disorder and Asperger syndrome. Worldwide, most people with autism spectrum disorders and their families do not receive any care from health and social care systems.

Friday, May 23, 2014

TRICARE Amendment

Today, Congressman John B. Larson and Congressman Tom Rooney (R-FL) announced the passage of a National Defense Authorization Act amendment that would require TRICARE, the military healthcare program, to ensure access to behavioral treatments for military families who have children with development disabilities. The measure is nearly identical to legislation Larson and Rooney introduced (The Caring for Military Children with Developmental Disabilities Act) which has received wide support from military, veteran and disability advocacy groups.
“The House stood up for military families today- moving us one step closer to ensuring that children with developmental disabilities covered by TRICARE have access to the care they deserve,” said Larson. “The bottom line is that this is the right thing to do. I want to thank my colleague Tom Rooney whose steadfast work on this issue on behalf of military families across the nation has been integral in moving this forward. We must be doing everything we can to ensure that those who have sacrificed so much for our nation have the peace of mind that their children will be able to access the care they need. Passage of this amendment moves us one step closer and I look forward to working with my colleagues to ensure it is signed into law.
“Families across the country face incredible challenges in raising children with development disabilities,” said Rooney. “I’ve seen this firsthand with my two nephews. For our military families, these challenges can be particularly daunting. Passing this amendment helps ensure that the children of our troops and military retirees have access to the health care services they need.”
Despite proven effectiveness in helping children with developmental disabilities, families must navigate a patchwork of different policies, all with eligibility and coverage limitations, within TRICARE that allow access to a behavioral health treatment known as applied behavior analysis (ABA). Larson has joined Rooney in introducing a number of measures to expand access under TRICARE to behavioral health treatment, including ABA, for military families, including legislation earlier this month and the Caring for Military Kids with Autism Act (H.R. 2288) in the 112th Congress.
Click here to view a list advocacy groups that have expressed their support for Larson and Rooney’s TRICARE legislation (H.R. 4630)

Thursday, May 22, 2014

A Really Bad Study of Autism and Violence

A number of posts have discussed bad media coverage linking autism to violence. At ForbesEmily Willingham kicks a bad academic study to the curb:
According to mental health professionals who personally diagnosed serial killer Jeffrey Dahmer, he had a personality disorder. That didn’t stop the authors of a recent paper attempting to link autism and mass murderers, serial killers, and other homicidal maniacs from listing Dahmer as “highly suspected” of having an autism spectrum disorder, along with a 61 other people who were never diagnosed with one, including Timothy McVeigh, Terry Nichols, and Dylan Klebold.
I’ve seen some recklessness in my wanderings through the world of autism science, but these authors reach depths I cannot fathom. If you doubt that, let me just point out that they use the Daily Mail as one of their citations to demonstrate that a killer not diagnosed with autism might have it and cite an author who very much wants to make up a diagnostic category called “Criminal Autistic Psychopathy” as a subset of Asperger’s. Which no longer exists.
In their paper, which is making a splash, of course, Clare Allely and co-authors claim that 67 of the 239 “eligible killers” they evaluated in their review had “definite, highly probable, or possible” autism spectrum disorder. But a closer look at their numbers shows that of these, only six were in the “definite” category [ETA: details on those six summarized here]. That’s 2.5% of the total of 239 they examined. It’s a percentage that happens to be just slightly less than the 2.6% identified in the most thorough study of autism prevalence in the general population to date, in South Korea.
The evaluations of the South Korean population were thorough, but perhaps no other population receives more expert attention and evaluation than killers like these who survive their crimes, as Dahmer, McVeigh, and Ramirez did, and killers who do not but whose writings and other leavings undergo deep scrutiny from experts involved in their cases. Their evaluations are not a mystery. Psychologists had access to Dahmer and evaluated him. Psychologists had access to Richard Ramirez (the Nightstalker) and evaluated him. Ditto McVeigh. These are professionals who personally evaluated these killers, and “autism” was not on their list of labels.
It is inappropriate for anyone–much less these authors, giving the imprimatur of science and peer review–to diagnose from a distance someone they have never even met and with whose case they are not deeply familiar. Add to that their conflation of mass murderers and serial killers, whose psychic motivations can be very different, and this entire paper is one big, hot, irresponsible mess.

Wednesday, May 21, 2014

Congressional Hearing on Autism Research

The Government Operations Subcommittee of the House Committee on Oversight and Government Reform yesterday held a hearing, "Examining the Federal Response to Autism Spectrum Disorders."

GAO's Marcia Crosse testified:
Eighty-four percent of the autism research projects funded by federal agencies had the potential to be duplicative. Of the 1,206 autism research projects funded by federal agencies from fiscal years 2008 through 2012, 1,018 projects were potentially duplicative because the projects were categorized to the same objectives in the Interagency Autism Coordinating Committee’s (IACC) strategic plan. Funding similar research on the same topic is sometimes appropriate—for example, for purposes of replicating or corroborating results—but in other instances funding similar research may lead to unnecessary duplication. Each agency funded at least 1 autism research project in the same strategic plan objective as another agency and at least 4 agencies funded autism research in the same research area.

The IACC and federal agencies may have missed opportunities to coordinate and reduce the risk of duplicating effort and resources. GAO found that the IACC is not focused on the prevention of duplication, and its efforts to coordinate the Department of Health and Human Services’ (HHS) autism research and monitor all federal autism activities were hindered by limitations with the data it collects. Apart from federal agencies’ participation on the IACC, there were limited instances of agency coordination, and the agencies did not have robust or routine procedures for monitoring federal autism activities.
Phillip Swarts reports at The Washington Times:
Rep. Gerry Connolly, Virginia Democrat, said the findings could be misused by those who want to cut vitally needed federal research programs.
“What you’re doing is playing into the hands of the people up here, willingly or not, who actually want to cut down on federal resources because ‘all federal spending is bad,’” said Mr. Connolly at a hearing on the federal response to autism by the House Oversight and Government Reform subcommittee on government operations.
The comments prompted the panel’s chairman, Rep. John Mica, Florida Republican, to state that the hearing was for fact-finding only, to evaluate investigators’ claims.
“I just want the record to clearly reflect this isn’t an attempt to cut funds or do away with the research,” Mr. Mica said. “When an agency makes a statement like that, it gets our attention.”
ASAN expressed concern that the subcommittee did not invite testimony from autistic witnesses.

Tuesday, May 20, 2014

Autism, Safety, and ADA

In the past year, however, there has been a significant increase in ADA issues where the case involved a family with a child with autism.
Children with autism can be “runners,” where they slip out of sight in a split second. Protecting a child on the autism spectrum from “running” is, for a parent, a vital safety concern and can be a matter of life and death. In my small nonprofit that provides gymnastics classes to children with special needs, we assign volunteers specifically to catch students who run from the group because the gymnastics floor is spotted with dangerous equipment, cheese pits (large holes filled with foam cubes), and in-ground trampolines.

A second matter invokes more of the Fair Housing Act with elements of the ADA present. Some housing communities, or homeowners' associations, prohibit certain structures or modifications, often for aesthetic reasons and to ensure uniformity. Conflicts arise when fencing is prohibited, yet is needed to keep a child with autism from running out of the yard and into the road. Prohibiting the fence would violate the law.

The Americans with Disabilities Act, along with the Fair Housing Act, protect children and adults on the autism spectrum. For some children and adults, protecting their rights can be a matter of safety.

Monday, May 19, 2014

A Settlement in Washington State

The Seattle Times reports:
Premera Blue Cross and its subsidiary, LifeWise Health Plan of Washington, will remove restrictions on neurodevelopmental therapy for autism and set aside $3.5 million to reimburse policyholders who paid for therapy out of pocket.

Under the settlement agreement, Premera and Lifewise will remove age limits and treatment limitations from any medically necessary speech, occupational and physical therapy. The change will apply to all insured plans issued by Premera and LifeWise in Washington.

The settlement is the latest to emerge from a string of lawsuits brought against insurers, employers and state agencies that restrict or limit neurodevelopmental therapy such as applied behavior analysis.

The final settlement agreement in the Premera case, reached in three class-action lawsuits in King County Superior Court and in U.S. District Court in Seattle, must be preliminarily approved by the three judges.

The lawsuits were brought by five individuals diagnosed with autism and their parents, alleging the restrictions violated the Washington State Mental Health Parity Act, which requires equal coverage for mental and physical services.

Sunday, May 18, 2014

New Study on Vaccines and Autism

At Vaccine Luke E. Taylor and colleagues have an article titled "Vaccines are not Associated with Autism: An Evidence-based Meta-analysis of Case-control and Cohort Studies."  The abstract:
There has been enormous debate regarding the possibility of a link between childhood vaccinations and the subsequent development of autism. This has in recent times become a major public health issue with vaccine preventable diseases increasing in the community due to the fear of a ‘link’ between vaccinations and autism. We performed a meta-analysis to summarise available evidence from case-control and cohort studies on this topic (MEDLINE, PubMed, EMBASE, Google Scholar up to April, 2014). Eligible studies assessed the relationship between vaccine administration and the subsequent development of autism or autism spectrum disorders (ASD). Two reviewers extracted data on study characteristics, methods, and outcomes. Disagreement was resolved by consensus with another author. Five cohort studies involving 1,256,407 children, and five case-control studies involving 9920 children were included in this analysis. The cohort data revealed no relationship between vaccination and autism (OR: 0.99; 95% CI: 0.92 to 1.06) or ASD (OR: 0.91; 95% CI: 0.68 to 1.20), or MMR (OR: 0.84; 95% CI: 0.70 to 1.01), or thimerosal (OR: 1.00; 95% CI: 0.77 to 1.31), or mercury (Hg) (OR: 1.00; 95% CI: 0.93 to 1.07). Similarly the case-control data found no evidence for increased risk of developing autism or ASD following MMR, Hg, or thimerosal exposure when grouped by condition (OR: 0.90, 95% CI: 0.83 to 0.98; p = 0.02) or grouped by exposure type (OR: 0.85, 95% CI: 0.76 to 0.95; p = 0.01). Findings of this meta-analysis suggest that vaccinations are not associated with the development of autism or autism spectrum disorder. Furthermore, the components of the vaccines (thimerosal or mercury) or multiple vaccines (MMR) are not associated with the development of autism or autism spectrum disorder.

Saturday, May 17, 2014

Charter Schools and Civil Rights

Catherin Lhamon, Assistant Secretary of Education for Civil Rights, has a letter to charter schools:
Free appropriate public education for students with disabilities.18 Under Section 504, every student with a disability enrolled in a public school, including a public charter school, must be provided a free appropriate public education–that is, regular or special education and related aids and services that are designed to meet his or her individual educational needs as adequately as the needs of students without disabilities are met.19 Evaluation and placement procedures are among the requirements that must be followed if a student needs, or is believed to need, special education or related services due to a disability.20
Charter schools may not ask or require students or parents to waive their right to a free appropriate public education in order to attend the charter school. Additionally, charter schools must provide nonacademic and extracurricular services and activities in such a manner that students with disabilities are given an equal opportunity to participate in these services and activities.21 More information will be provided in joint guidance that OCR and OSERS plan to issue on the rights of students with disabilities who attend charter schools.
 18 IDEA also has a specific statutory definition of the term free appropriate public education. 20 U.S.C. § 1401(9) and 34 C.F.R. § 300.17. This letter does not address the IDEA definition of free appropriate public education or other related IDEA requirements.
19 34 C.F.R. § 104.33(b)(1).
20 34 C.F.R. § 104.35.
21 34 C.F.R. § 104.37; see also OCR, Dear Colleague letter on Extracurricular Athletics (January 25, 2013), available at

Friday, May 16, 2014

Disease? Disorder? Disability? Difference?

Is autism a disease to be cured? A disability to be accommodated?  A difference to be celebrated?

At The New York Times, Jeffrey Howe reflects on reactions to a piece he wrote about the cost of dealing with his son's autism.
But the debate over whether autism is a disease to be cured or a variation to be celebrated is an abstraction, utterly disconnected to our day-to-day experience. To describe that, I cannot avoid the lexicon of illness.
Last year Finn climbed out his bedroom window, falling two and a half stories, breaking his pelvis and fracturing two vertebrae. He had pushed his stuffed animals out the window, and lacking any understanding of gravity or height, he simply wanted to join them in our yard. I can love Finn for his Finn-ness, but I cannot avoid words like “impaired,” “delayed” and “nonverbal,” or the phrase that particularly irks so many autism advocates, “low functioning.”
Yet language like that angers a vocal subset of autism spectrum disorder adults, and it has opened a schism in a community already starved for resources. To the quirky Intel programmer who recently was given a diagnosis of Asperger’s, treating autism as a disease to be cured must seem like a personal affront, but for people struggling to raise a child incapable of communication, using the toilet or controlling a physically violent temper, seeing autism as pathology isn’t much of a reach.


From Autism Speaks:
Autism Speaks, the Simons Foundation and the Autism Science Foundation have launched “It Takes Brains,” the new donor registration site for Autism BrainNet.
Autism Speaks Chief Science Officer Rob Ring joined Autism BrainNet Director David Amaral and the Simons Foundation’s Marta Bennedetti in making the announcement at the annual Stakeholders Luncheon at the International Meeting for Autism Research (IMFAR), in Atlanta today.

A year ago, the Simons Foundation and Autism Speaks announced their collaboration in establishing Autism BrainNet to collect, store and distribute the precious brain tissue needed to advance scientific understanding and treatment of autism. The new foundation grew out of the Autism Speaks Autism Tissue Program.
As Autism BrainNet’s outreach program, the “It Takes Brains” website encourages families affected by the disorder to register as future donors.
“I would encourage any family to register to be donors,” says BrainNet family participant Valerie Hund, of Livermore, California. “Although we could not have anticipated losing our son to a seizure, for us, in that moment, we gave back and did something that felt right. So now Grayson can be a pioneer in helping make this next quantum leap in research. Out of something bad, something good came about.”

A severe shortage of human brain tissue has hindered the pace of autism research. At the same time, these precious donations have led to recent breakthroughs.

For instance, research has revealed structural differences between brain tissue from individuals affected by autism and typically developed brains. Other studies have highlighted differences in the numbers and sizes of brain nerve cells, or neurons. Still other research has picked up signs of increased inflammation in brain tissue from individuals affected by autism. In addition, studies have uncovered differences in how genes are expressed inside their brain cells.
However, researchers have not been able to adequately confirm these findings – in part due to the long-standing shortage of donations.

Thursday, May 15, 2014

Vaccines, Autism, and TV News

Many posts have discussed media coverage of autism, including the claim that vaccines cause it. Sean Long reports at the Media Research Center:
In 171 stories during 15 years of morning and evening news shows, ABC, CBS and NBC reported heavily on the ongoing debate, giving time to prominent anti-vaccine celebrities and families who blamed autism on vaccines.
Many sources including the San Francisco Chronicle and the Los Angeles Times attribute a CBS “60 Minutes” interview with Wakefield in 2000 for bringing his views to prominence in America. Since then, Wakefield lost his medical license amidst accusations of fraud and conflicts of interest, and The Lancet, the British medical journal that published his study, publicly retracted it.
Most of the interviews with Wakefield focused on those allegations of fraud, which were still unproven. But in the interviews none of the network journalists asked him to justify the puny sample size of his study, although they called it “small.” A quick examination of his 12 person study would have exposed serious flaws.
Instead, the networks insisted on debating the science. Matt Lauer’s May 24, 2010, “Today” interview with Wakefield was just one example. Dr. Ben Goldacre, a pro-vaccine physician, called that interview “staggeringly weak” while blasting journalists who “[say] ‘let’s debate the science.'” Instead, Goldacre suggested “press[ing] them hard on the obvious simple holes in their claim.”
More than simply covering the connection, some reporters, including former CBS reporter Sharyl Attkisson who reported anecdotes and interviewed many families convinced that vaccines caused their children’s autism.
Attkisson was particularly prone to report such anecdotes. Some segments, such as May 18, 2004, “Evening News” began and ended with minute long interviews with parent who blamed vaccines for their children’s autism. She even ended that story by asking, “How can it be wrong to err on the side of caution?”
In a similar broadcast on June 12, 2004, Attkisson included an anti-vaccination parent at a rally who claimed, “The CDC is going to become the Enron of the vaccine industry.” The Enron Corporation had recently collapsed in part due to fraudulent financial practices.
Years later, on April 21, 2014, Attkisson defended her vaccine reporting to CNN’s “Reliable Sources,” calling them “some of the most important stories I’ve done.”

Wednesday, May 14, 2014

Health Problems of Autistic Adults

Autistic adults are much more likely than others to suffer from depression, high blood pressure, obesity and additional health woes that may partly result from their social isolation, new research suggests.
They’re also much less likely to smoke and drink alcohol, a paradoxical finding since those habits can contribute to many conditions that disproportionately affect autistic adults. Scientists say that could mean that their biologic makeup contributes to some of the illnesses.
The study is one of the largest, most comprehensive efforts to examine the health of autistic adults and highlights a need for better strategies to treat them, said scientist Lisa Croen, the lead author and director of the autism research program at Kaiser Permanente Division of Research in Oakland, California.
Some common features, including lack of eye contact and social awkwardness, might suggest that people with autism dislike human contact. But Croen said it’s more likely that they share a desire to connect with other people but have trouble doing so. That isolation could lead to problems like depression, she said.
Croen said isolation might also at least partly explain the lower rates of drinking and smoking, since those are social activities.
Psychiatric and Medical Conditions Among Adults with ASD
L. A. Croen, O. Zerbo, Y. Qian and M. L. Massolo, Division of Research, Kaiser Permanente Northern California, Oakland, CA
Background: Children with autism spectrum disorders (ASD) have been shown to have a higher burden of medical and psychiatric comorbidities and increased utilization of health care services compared to the general pediatric population. However, very little is known about the general health status among the adult ASD population. Given that increasing numbers of children are entering adulthood each year with an ASD diagnosis, an understanding of this issue is critical for resource planning and the development of effective strategies for health care delivery to adults with ASD.
Objectives: To describe the frequency of psychiatric and medical conditions among a large, diverse, insured population of adults with ASD in the US.
Methods: The study population was drawn from the adult membership (≥ 18 years) of Kaiser Permanente Northern California (KPNC) (~2.5 million) enrolled in the health plan for at least 9 months each year from 2008-2012. Physician documented diagnoses routinely captured in KPNC electronic medical records were utilized for all analyses. ASD cases (N=2,108) were adults with at least one ASD diagnosis (ICD-9-CM 299.0-299.8) recorded by December 2012. A control group of adults without any ASD diagnoses (N=21,080) were sampled at a 10:1 ratio and frequency matched to cases on total length of KPNC membership, sex, and age. We compared the prevalence of psychiatric, behavioral, and medical conditions overall and by sex, age group, and race/ethnicity between cases and controls.
Results: Adults with ASD had significantly increased rates of depression (38% vs. 17%), anxiety (39% vs. 18%), bipolar disorder (8% vs. 1%), and suicide attempts (1.6% vs. 0.3%), and prevalence differences between cases and controls increased with age. Among women, rates of alcohol and chemical dependency were 2-fold higher in ASD cases than controls. Nearly all medical conditions were significantly more common in adults with ASD than controls: diabetes (6% vs. 4%), gastrointestinal disorders (47% vs. 38%), epilepsy (12% vs. 1%), sleep disorders (19% vs. 10%), dyslipidemia (26% vs. 18%), hypertension (27% vs. 19%), and obesity (27% vs. 16%). Among women, asthma, allergy and autoimmune disorders were present 20%-30% more often in adults with ASD than controls. Rarer conditions, such as eating disorders, mechanical falls, vision and hearing impairments, osteoporosis, and chronic heart failure were also significantly more common among adults with ASD than controls. Rate differences between cases and controls were variable across race/ethnic groups, especially for diabetes and epilepsy. Of note, adults with ASD were significantly less likely to use alcohol (23% vs. 53%) or smoke (16% vs. 30%). Finally, the rate of cancer was similar between ASD cases and controls (2.7% vs. 2.6%). [emphasis added]

Conclusions: Adults with ASD have a significant burden of major psychiatric and medical conditions. Their underlying impairments in social communication and increased sensory sensitivities likely impede the delivery of preventive health care. Improved strategies for delivering the most appropriate and effective health care are needed for this growing population.

Autistic Hacker

The Smoking Gun reports:
In an effort to identify leaders of Anonymous, the FBI arrested an autistic New York man and then used him as a cooperating witness to help snare a notorious fellow hacker who was subsequently indicted for his central role in a series of high-profile online attacks, The Smoking Gun has learned.
In return for the hacker’s cooperation--and in light of his autism--Department of Justice officials initially agreed to defer prosecution on a criminal complaint charging the man with hacking Gawker Media, an illegal incursion that yielded registration information for more than a million individuals who signed up with the popular blog network.
Federal prosecutors eventually dropped the hacking charge altogether, according to court records that were kept under seal long after the hacker’s arrest by a team of FBI agents. Investigators were concerned that if the man’s cooperation became public, he would be harassed by hackers then being targeted by the FBI. Additionally, disclosure of his cooperation, prosecutors contended, “would jeopardize substantial ongoing investigations into the defendant’s former co-conspirators, many of whom are suspected of carrying out substantial computer hacks against several businesses.”
So, to “help ensure the defendant’s safety,” Thomas “Eekdacat” Madden became, for a time, “John Doe.”
The 26-year-old Madden, whose cooperation has not been previously disclosed, lives with his parents in Troy, a city 10 minutes outside Albany. An only child, Madden graduated in December 2010 from Rensselaer Polytechnic Institute, where he completed a double major in computer science and mathematics, according to school records.

Tuesday, May 13, 2014

Combating Autism Act: 2014 Reauthorization

Rep. Chris Smith (R-04) and Rep. Mike Doyle (D-PA) today unveiled bipartisan legislation to reauthorize the Combating Autism Reauthorization Act.
“We need to work overtime to build on the successes CARA is producing for individuals with autism and their families,” said Smith, author of the bill who with Doyle founded and co-chairs the bipartisan Coalition on Autism Research and Education (C.A.R.E.). “This is a critical investment that is working to determine the cause of ASD, identify autistic children as early as possible to begin treatment, and producing better awareness, new therapies and effective services. The quality of life of many children is at stake, as it is with young adults who age out of the support services in educational systems.”
The bill, H.R. 4631, has 35 bipartisan co-sponsors.
Smith’s bill adds key reforms to the Interagency Autism Coordinating Committee (IACC) and safeguards to the funding allotted in the bill to ensure coordination is maximized and the taxpayers’ dollars are spent efficiently. It further increase accountability but requiring HHS to designate an individual charged with implementing IACC’s annual strategic plan and report to Congress how they are doing so.
It was almost 17 years ago, on September 13, 1997, Bobbie and Billy Gallagher, of Brick, N.J. residents with two small children with autism, walked into Smith’s office looking for help. The Gallaghers brought a focus to the issue of autism and the needs of autistic children that was missing at the federal level. Armed with data and their own research, they helped win approval of a landmark federal study and the enactment of legislation in 2000—the Autism Statistics, Surveillance, Research and Epidemiology Act (Title I, P.L. 106-310)—which created the first comprehensive federal program to combat autism.
Smith is the author of the 2011 law,The Combating Autism Reauthorization Act (CARA)— (now Public Law 112-32) enacted on September 30, 2011. CARA authorized autism-related programs for fiscal years 2012, 2013 and 2014 and included: $22 million for the Developmental Disabilities Surveillance and Research Program; $48 million for Autism Education, Early Detection, and Intervention, and; $161 million for hundreds of Research Grants at the National Institutes of Health (NIH), and for the Interagency Autism Coordinating Committee. Smith’s new bill reauthorizes these programs for five years.

Monday, May 12, 2014

State Variation in Insurance Mandates

Rebecca A Johnson, Marion Danis, and Chris Hafner-Eaton have an article in Autism titled "US State Variation in Autism Insurance Mandates: Balancing Access and Fairness,"  The abstract:
This article examines how nations split decision-making about health services between federal and sub-federal levels, creating variation between states or provinces. When is this variation ethically acceptable? We identify three sources of ethical acceptability—procedural fairness, value pluralism, and substantive fairness—and examine these sources with respect to a case study: the fact that only 30 out of 51 US states or territories passed mandates requiring private insurers to offer extensive coverage of autism behavioral therapies, creating variation for privately insured children living in different US states. Is this variation ethically acceptable? To address this question, we need to analyze whether mandates go to more or less needy states and whether the mandates reflect value pluralism between states regarding government’s role in health care. Using time-series logistic regressions and data from National Survey of Children with Special Health Care Needs, Individual with Disabilities Education Act, legislature political composition, and American Board of Pediatrics workforce data, we find that the states in which mandates are passed are less needy than states in which mandates have not been passed, what we call a cumulative advantage outcome that increases between-state disparities rather than a compensatory outcome that decreases between-state disparities. Concluding, we discuss the implications of our analysis for broader discussions of variation in health services provision. [emphasis added]
Of course, the existence of a mandate does not necessarily translate into actual provision of service.

Sunday, May 11, 2014

Transfers in Philadelphia

Kevin McCorry writes at Newsworks:
Parents of children with autism in the Philadelphia School District are celebrating a victory this week.
In a preliminary decision, United States Federal District Court Judge Legrome Davis ruled that the school district can no longer transfer autistic students to new elementary or middle schools without giving parents an opportunity to understand and discuss the decision.
Transfers are often necessary because not every school in the Philadelphia School District has classrooms and teachers designated to providing autistic support for every grade level. Some schools, for instance, may be able to serve kindergarten through third grade, but lack resources for grades four and five.
When this happens, the district's "automatic autism transfer policy" shuffles students to another public school that can serve the students' needs. The problem, though, according to a class-action lawsuit filed in 2011, is that the district has been acting with little to no input from parents, often at the last minute.

Saturday, May 10, 2014

Ruth Christ Sullivan

A couple of years ago, The Huntington Quarterly listed some accomplishments of Ruth Christ Sullivan:
  • She was the first lobbyist to bring autism issues to the state legislatures of New York and West Virginia.
  • She was the first lobbyist for autism issues at the United States Congress and was instrumental in the passage of the national Individuals with Disabilities Education Act [then the Education for All Handicapped Children Act] in 1975, guaranteeing free education to all children with disabilities, including autism.
  • She operated the National Autism Hotline out of her home for five years.
  • She founded several state and local chapters of the Autism Society of America.
  • She served on the board of the ASA for four years, and she is still an honorary board member.
As an early autism lobbyist, she succeeded in getting Congress to include autism in the Developmental Disabilities Act.

KPLC-TV in Lake Charles, Louisiana, profiles Sullivan:

KPLC 7 News, Lake Charles, Louisiana

 In part 2, Sullivan talks about progress since the 1960s:

 KPLC 7 News, Lake Charles, Louisiana

Friday, May 9, 2014


Autism Speaks reports:
Bipartisan legislation that would require TRICARE to cover applied behavior analysis (ABA) for all military children with developmental disabilities, including autism, at medically prescribed levels was introduced today in the U.S. House of Representatives.

Sponsored by Reps. John Larson (D-CT) and Tom Rooney (R-FL), the Caring for Military Children with Developmental Disabilities Act of 2014 marks the latest effort in Congress to improve and standardize medical coverage of ABA therapy under TRICARE, the military health system.
The bill, HR.4630, would provide access to ABA for all children with developmental disabilities, improve coverage to address medically recommended treatment levels, and allow for coverage of the ABA tiered service delivery model which includes Board Certified Assistant Behavior Analysts and ABA Technicians.

In 2012, a similar bill passed both houses of Congress requiring expanded coverage, but the measure was whittled down in conference committee to a one-year pilot program which has been problematic and has served very few children.

TRICARE now has three different programs delivering ABA services in three different ways, and not one of them is permanent. Last month, TRICARE reported to Congress it plans to consolidate the three programs into a new demonstration which is also a temporary program. The new bill works to make ABA coverage a permanent medical benefit under TRICARE.

Thursday, May 8, 2014

Waiting in Nevada

In Las Vegas, Sandra Gonzalez reports at KSNV:
As more children are being diagnosed with autism, the availability of services are being outpaced by demand. That's what a group of experts told legislators Wednesday in Las Vegas.

"Douglas would scream and cry for hours while I was driving, he would become self abusive. He would make several attempts to bite and scratch me while I'm driving," Korri Ward told a legislative committee on healthcare.

She was sharing the experience of driving her son on a four hour trip to be tested for autism. She spoke via videoconference from Carson City, to explain life with autistic twins in rural Nevada. Her sons are now 20.

But in the Las Vegas valley, autism experts say there are still difficulties to access therapy and treatment for children with autism spectrum disorder.

"It's a mess. We have kids on the waiting list, whose lives could be changed if they were served and they are not being served," said Barbara Buckley, Executive Director of Legal Aid Center of Nevada.

Wednesday, May 7, 2014

Special Education Funding

Last Thursday, Education Week reported:
U.S. Rep. John Kline, R-Minn., the chairman of the House education committee, wants to see a big increase for federal special education funding, to the tune of $1.5 billion, in the next spending bill for the U.S. Department of Education. That would bring aid for special education to $13 billion, and the federal share of such spending up to 18 percent of the excess cost of educating a child with disabilities.
The feds originally pledged to pony up 40 percent of that funding when Congress first approved what is now the Individuals with Disabilities Education Act back in the 1970s. But they've never come close to that threshold, and right now it's about 16 percent. On Tuesday, Kline sent a letterasking for the increase to lawmakers on the House Appropriations Committee. He was joined by Rep. Todd Rokita, R-Ind., who oversess the House education subcommittee that deals with K-12 policy, and Rep. Cathy McMorris Rodgers, R-Wash., who has a son with special needs.

"Although our requested increase still falls short of the federal government's commitment to special-needs children, such a meaningful increase would generate significant new funding for all states and districts, giving policymakers and educators more freedom to use state and local funds to strengthen general and special education in their communities," the lawmakers wrote.

Notably, the letter doesn't propose where in the Education Department to cut to make room for such a major increase. A recent budget agreement would largely hold domestic-spending levels steady far into next year, so a boost for special education would likely mean cuts elsewhere. Presumably, the Obama administration's competitive grants, such as Race to the Top, would be tempting targets for the GOP. This is a long-standing issue; see more here.

Tuesday, May 6, 2014

Outbreaks Might Not Increase Vaccination Rates

A release from the American Academcy of Pediatrics:
Conventional wisdom holds that when the risk of catching a disease is high, people are more likely to get vaccinated to protect themselves.
This may not be the case, however, according to a study to be presented Monday, May 5, at the Pediatric Academic Societies (PAS) annual meeting in Vancouver, British Columbia, Canada.
Researchers, led by Elizabeth R. Wolf, MD, FAAP, compared rates of infant vaccination with the diphtheria, tetanus and pertussis vaccine (DTaP) before and during an epidemic of pertussis (whooping cough) in Washington state. Surprisingly, they found no difference in vaccination rates.
"We have always assumed that when the risk of catching a disease is high, people will accept a vaccine that is effective in preventing that disease. Our results may challenge this assumption," said Dr. Wolf, the Ruth L. Kirschstein National Research Service Award Fellow in General Academic Pediatrics at University of Washington, Seattle Children's Research Institute.
Washington state experienced a pertussis epidemic from Oct. 1, 2011, through Dec. 31, 2012, and infants were hit the hardest. The highly contagious bacterial disease causes uncontrollable, violent coughing that can make it hard to breathe. Pertussis also is known as whooping cough because a "whooping" sound often is heard when the patient tries to take a breath. Pertussis can lead to pneumonia, seizures (jerking and staring spells), brain damage and death.
Dr. Wolf and her colleagues compared the proportion of 3- to 8-month-olds who had received the recommended number of doses of pertussis-containing vaccine before the epidemic and during the epidemic. Infants who received at least one dose by 3 months of age, at least two doses by 5 months and at least three doses by 7 months are considered up to date by the Advisory Committee on Immunization Practices of the Centers for Disease Control and Prevention.
"We hypothesized that a whooping cough epidemic would result in more parents getting their children immunized against whooping cough," Dr. Wolf said. "But compared to a time before the 2011-2012 whooping cough epidemic in Washington state, there was no significant increase in receipt of whooping cough vaccines for infants during the epidemic."
Results did show considerable variability in vaccination rates among different counties.
"Vaccination rates in the U.S. are still below public health goals," Dr. Wolf noted. "We don't fully understand what improves vaccine acceptance. This study found no significant increase in vaccination coverage statewide during the 2011-2012 pertussis epidemic. This finding may challenge the assumption that vaccine acceptance uniformly increases when risk of disease is high."

Dr. Wolf will present "The Effect of the 2011-2012 Pertussis Epidemic on Infant DTaP Vaccination in Washington State" from 12:00-12:15 p.m. Monday, May 5. To view the study abstract, go to

Monday, May 5, 2014

Wakefield Chills Research

Emily Willingham writes at Forbes:
This Pediatrics review of autism and gut disorders found higher rates of constipation, diarrhea, and stomach pain among autistic people. But the authors do not once mention anxiety.
That in spite of the fact that anxiety is a key feature of autism and that research suggests that autism and anxiety are indeed linked. And that gut conditions like diarrhea and constipation and gut pain are often related to anxiety.
When children aren’t autistic and they have stomach pain or constipation or diarrhea, the frequent conclusion is that stress and anxiety are the cause and predictive of anxiety in adulthood. Indeed, with that little nervous system parked there in our gut, it’s no wonder that things get a little seized up and out of rhythm when the rest of us does.
So why is it that no one attends to this clear (to me) link when it come to autistic children? Well, the Pediatrics review by McElhanon et al. happens to cite that reason several times:
Wakefield’s MMR/autism/gut red herring and the subsequent noxious cloud that his fraud (link added 5/2/14) left over any research examining autism and the gut. So we don’t know anything about the real underlying causes of these digestive problems among autistic children. The Pediatrics authors state it unequivocally, as they have done before (link added 05/02/14):
It is clear that greater clinical and research scrutiny is needed to increase awareness on this topic and thus support development of the best standards of care. Previous controversy surrounding the MMR vaccine and proposed causal link between ASD and infection of the GI tract probably deterred investigators from dedicating resources to examine GI functioning in this population while fostering uncertainty in the ASD community regarding the validity of this line of inquiry.

Sunday, May 4, 2014

Familial Risk and "Environmental" Causes of Autism

Sven Sandin and colleagues have an article in JAMA titled "The Familial Risk of Autism."
Importance Autism spectrum disorder (ASD) aggregates in families, but the individual risk and to what extent this is caused by genetic factors or shared or nonshared environmental factors remains unresolved.
Objective To provide estimates of familial aggregation and heritability of ASD.
Design, Setting, and Participants A population-based cohort including 2 049 973 Swedish children born 1982 through 2006. We identified 37 570 twin pairs, 2 642 064 full sibling pairs, 432 281 maternal and 445 531 paternal half sibling pairs, and 5 799 875 cousin pairs. Diagnoses of ASD to December 31, 2009 were ascertained.
Main Outcomes and Measures The relative recurrence risk (RRR) measures familial aggregation of disease. The RRR is the relative risk of autism in a participant with a sibling or cousin who has the diagnosis (exposed) compared with the risk in a participant with no diagnosed family member (unexposed). We calculated RRR for both ASD and autistic disorder adjusting for age, birth year, sex, parental psychiatric history, and parental age. We estimated how much of the probability of developing ASD can be related to genetic (additive and dominant) and environmental (shared and nonshared) factors.
Conclusions and Relevance Among children born in Sweden, the individual risk of ASD and autistic disorder increased with increasing genetic relatedness. Heritability of ASD and autistic disorder were estimated to be approximately 50%. These findings may inform the counseling of families with affected children.
News accounts of the study are emphasizing the "environmental" side.  The Reuters story begins: "Environmental factors are more important than previously thought in leading to autism, as big a factor as genes, according to the largest analysis to date to look at how the brain disorder runs in families." A careless reader might jump to the conclusion that the study is fingering air and water pollution. But a 2011 New York Times article made a key distinction:
But “environment” is a tricky word. To many scientists studying autism, it means “everything that’s not the inherited DNA,” said Irva Hertz-Picciotto, a professor of epidemiology at the University of California, Davis, MIND Institute. An environmental influence might be a chemical the fetus is exposed to via the placenta, or it might refer to aspects of nutrition, maternal health, stress — or perhaps exposure to a microbe. [emphasis adde

Saturday, May 3, 2014

IACC Update

IACC has issued its 2013 update to its strategic plan.  From the full text:
Most areas have received extensive investment ($1.5 billion expended from 2008-2012 by federal and private funders) and significant progress has been made since the original Plan was published in January, 2009. According to the PubMed database of biomedical research literature, over 11,000 journal articles on autism have been published since January, 2009, more than double the number published in the preceding 5 years. The world of ASD research has changed profoundly during this period, with increases in United States ASD prevalence estimates, changes in ASD diagnostic criteria, greater understanding of co-occurring conditions and services needs, and new insights from genetics, environmental studies, and neuroimaging into the biology and etiology of ASD. In addition to this review of the investment and progress, the Committee and external experts identified current research gaps, needs and barriers, as well as new opportunities created by advances in the field, which can provide direction for future investment.

Friday, May 2, 2014

Maine Override

The Maine Legislature has overturned Gov. Paul LePage’s rejection of a measure that would allow more children to receive private insurance coverage to treat autism.
The Democratic-controlled Senate voted 30-5 in favor of overriding the Republican governor’s veto on Thursday. The House followed with a 115-32 vote.
The bill would require insurance companies to provide coverage for treatment of autism spectrum disorder for children up to the age of 10. Current law only requires coverage for treatment for children ages 5 and under.
Supporters say some Maine children aren’t getting the care they need or are being forced onto Medicaid, which does cover treatment.
LePage opposed the bill because it would raise insurance premiums, including those on the Affordable Care Act exchange.

Thursday, May 1, 2014

Prenatal Testing and Ethics

At The Guardian, David Cox writes:
Once a conclusive biological trace has been identified, be it at the gene or protein level, this could be used at any point in development from before birth right through to adulthood. But unless the current diagnostic accuracy improves, there would be profound ethical concerns.
A large percentage of parents would almost certainly use a prenatal autism test to make a decision on whether to terminate the pregnancy – if the statistics for Down's syndrome since the introduction of prenatal screening are anything to go by. It is believed that around 90% of pregnancies in England and Wales that receive a diagnosis of Down's syndrome are aborted.
The existence of a prenatal screening test would also have implications for potential treatments. There are currently no drugs for treating autism disorder but in the near future, various hormonal treatments may become available. If clinicians were tempted to start medical intervention very early, there would be concerns about side effects in the unborn child. If the diagnosis proved to be faulty, the consequences of these decisions could have lasting effects.
"The best case use of a prenatal test at the moment would be if you could say to a parent, your child has got an 80% likelihood of autism and so once the baby's born, we would like to keep a close eye on that child in case they need extra support like speech therapy or social skills training or some sort of behavioural approach," Baron-Cohen says.
"That would mean that there were no potential side effects and you might be able to intervene at a much younger age. So from an ethical point of view, if there was a screening test, using it for early intervention via a psychological approach would be quite risk-free and could carry a lot of benefit."