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Friday, October 31, 2014

Asperger's As Slur

Pop culture figures sometimes use autistic as a slur. "Political autism" has sometimes cropped up as a term of abuse, mostly in Britain, though sometimes in the United States.  A few weeks ago, Wesleyan professor Peter Rutland wrote in the prestigious publication Foreign Policy:  "Nationalism is a form of political autism, reacting in an excessive and unpredictable fashion to outside stimuli. Only patient diplomacy, mutual understanding, and the study of history can steer East Asia to a peaceful future."

At The Daily Beast, Emily Shire writes about one variant:
Jeffrey Goldberg’s column in The Atlantic detailing the Obama administration increasingly frosty relationship with Israeli prime minister Benjamin Netanyahu sent geopolitical tongues wagging. Details of administration officials’ list of private insults to describe Netanyahu include chickenshit, myopic, obtuse, blustering. But one description was abhorrent on a level far above politics: “Aspergery.”
Despite the fact that it is incredibly offensive to people on the autism spectrum and the disability community to use the word “Aspergery,” no one on the right or left has criticized the Obama administration for reportedly using the term. While pundits scramble to analyze international implications, no one seems especially perturbed that the highest executive office allegedly throws around a “disability diagnosis as a pejorative,” as Ari Ne’eman, president of the Autistic Self Advocacy Network, puts it.

Thursday, October 30, 2014

More Than 100 Genes

The hunt to find genes that cause autism has been a long slog, one hampered by a lack of technology and families willing to be tested.
But those efforts are starting to pay off. On Tuesday, researchers at more than 50 laboratories said they had identified more than 100 genes that are mutated in children with autism, dozens more than were known before.
These are mutations that crop up spontaneously, not ones that parents pass down to their children. At least 30 percent of autism cases are caused by these spontaneous mutations, according to researchers at Cold Spring Harbor Laboratory.
One group of mutations contributes to autism in high-IQ, high-functioning boys, one study found, while another group influences autism in girls and boys with low IQ.
"There's somewhat of a mechanism difference in the genes that are being hit, and the way that gene function is being changed, "says Michael Ronemus, a researcher Cold Spring Harbor Laboratory and an author of one of the studies, which were published Tuesday inNature.
Girls are less likely to get autism than boys, and this study found that the mutations in girls affected genes that play crucial roles during an embryo's early days in the womb. Scientists think that girls are somehow protected against autism, and that it takes a heavy hit like this to cause the disorder in girls.

Tuesday, October 28, 2014

Out-of-Home Placement

The American Academy of Pediatrics has a report titled "Out-of-Home Placement for Children and Adolescents With Disabilities." The abstract:
The vast majority of children and youth with chronic and complex health conditions who also have intellectual and developmental disabilities are cared for in their homes. Social, legal, policy, and medical changes through the years have allowed for an increase in needed support within the community. However, there continues to be a relatively small group of children who live in various types of congregate care settings. This clinical report describes these settings and the care and services that are provided in them. The report also discusses reasons families choose out-of-home placement for their children, barriers to placement, and potential effects of this decision on family members. We examine the pediatrician’s role in caring for children with severe intellectual and developmental disabilities and complex medical problems in the context of responding to parental inquiries about out-of-home placement and understanding factors affecting these types of decisions. Common medical problems and care issues for children residing outside the family home are reviewed. Variations in state and federal regulations, challenges in understanding local systems, and access to services are also discussed.

"Appointments. Lots of Appointments."

The Missourian has a story on Keller Garcille of Rolla, Missouri:
Keller's diagnosis changed the Garcille family's life. Now they spend their time in waiting rooms and doctors' offices, researching autism developments and watching Keller for anything that may hint at a meltdown in the making.
"Appointments. Lots of appointments," Trevor Garcille said.
Because there are few autism specialists in Rolla, Missouri, where the Garcilles live, the family has made the Thompson Center in Columbia their primary source of care.
Every few months, the couple makes the two-hour drive with Keller for his appointments. Fortunately, the Garcille's insurance is accepted by the MU Health Care System.
"We go to Columbia because the Thompson Center is one of the best in the country. A two-hour drive is nothing when it gives him the best chance for growth," Erika Garcille said.
Since his diagnosis in April, Keller has had five assessments. That doesn't include all of the doctors' appointments and consultations for other factors, such as the influence of diet on his symptoms. In a time span of only six months, Keller has been to see one sort of doctor or another at least 14 times.
The Garcilles aren't the only ones stressed by the number of appointments they have. People and organizations that provide treatment, such as the Thompson Center, are also feeling the strain. Wait times for new patients are getting longer as the center manages an increase in the number of referrals it receives, as well as an increase in requests for evaluations.

Monday, October 27, 2014

Yet One More Risk Factor: C-Sections

Add another to the very long and always-growing list of correlates and risk factors.  The Irish Times reports:
Delivery by Caesarean section is associated with an increased risk of autism in childhood, according to a study by Irish researchers.
Children born by Caesarean section have a 23 per cent greater risk of developing autism spectrum disorder (ASD), the study to be published shortly in the Journal of Child Psychology and Psychiatry suggests.
The researchers, led by Eileen Curran of University College Cork, also look at links between Caesareans and attention deficit and hyperactivity disorder (ADHD) but the findings were unclear.
The authors urge caution in interpreting their results and say more research is urgently needed to explore the risks involved. The study is a meta-analysis of 25 previously published papers on the links between Caesarean sections and conditions such as autism and ADHD. Some showed the risk of autism after a Caesarean increased by as much as 40 per cent.
The study says it is unclear what is driving this association and whether it is causal. Children born by Caesarean section have different gut flora than those born by normal delivery, and some scientists believe this may be a factor in psychological development.

Sunday, October 26, 2014

Ignorance and Vaccines

Laurie Garrett and Maxine Builder of the Council on Foreign Relations write at The Los Angeles Times:
Since 2008, the Council on Foreign Relations has been collecting data and publishing weekly updates to an interactive map of vaccine-preventable diseases, and the map is now robust, dense with six years of data. One terrible truth stands out: Misinformation and rumors from just one persuasive voice, delivered effectively, can derail entire immunization campaigns and persuade millions of parents to shun vaccinations for their children.
And anti-vaccine sentiments aren't limited to the developing world. The effects of Andrew Wakefield's now thoroughly debunked 1998 Lancet study claiming links between vaccinations and autism are still being felt in the Western world, as can be seen in our interactive map. Outbreaks of pertussis in wealthy California communities, of mumps in Ohio college towns and of measles throughout the United Kingdom demonstrate the broad impact of the anti-vaccination movement.

In light of the paranoia evoked by Ebola, political and public health leaders must appreciate that not a single voice dispensing misinformation should go unchallenged. The general public has proved its inability to weigh facts accurately and reach a rational conclusion when fear clouds its judgment. Remarkably, in the case of the purported associations between autism and vaccines, the concept has gone viral in some of America's most highly educated and wealthy communities, as has unscientific advice about delaying certain immunizations to avoid “vaccine overload.
At The Daily Beast, Lloyd Grove writes of Jenny McCarthy:
McCarthy herself famously told Time magazine: “I do believe sadly it’s going to take some diseases coming back to realize that we need to change and develop vaccines that are safe. If the vaccine companies are not listening to us, it’s their fucking fault that the diseases are coming back…If you give us a safe vaccine, we’ll use it. It shouldn’t be polio versus autism.”

She came to this conclusion—and published three books on the subject—after her son Evan was diagnosed at age three with the neurological syndrome, and, by dint of sheer energy and celebrity, she became the nation’s most prominent purveyor of anti-vaxxer ideology.

Indeed, she is president of Generation Rescue, a group dedicated to the proposition that children on the autism spectrum can be cured, often by methods that depart from traditional, scientifically supported medicine.

“I am not anti-vaccine,” McCarthy insists. “I’m in this gray zone of, I think everyone should be aware and educate yourself and ask questions. And if your kid is having a problem, ask your doctor for an alternative way of doing the shots”—for example, fewer vaccination doses at the same time.


Saturday, October 25, 2014

Science, Information, and Trust

Chris Gunter writes at SFARI:
Anyone who has had to address the issue of autism and vaccines can vouch for the fact that simply relaying information is not enough to change someone’s behavior. The field of autism is not unique in this sense. A 2011 study found that informing people about the dangers of climate change actually lowered their perception of the risk1. Similarly, providing a scientific explanation of synthetic biology doubled the proportion of people who perceived more risks than benefits, a 2009 study found.
We have to accept that public opinion is not based on information alone. Rather, it incorporates a person’s trust for the information source and their pre-existing beliefs. This is important because it affects the types of research projects that get funded, as well as the types of treatment programs and research studies that families are willing to participate in.
John Elder Robison provided an important example in his eloquent address at the 2014 International Meeting for Autism Research. “There’s the continuing reality that lay people in the community believe that scientists want to do genetic research to eradicate autistic people,” said Robison, who has Asperger syndrome. “That may be the farthest thing from a researcher’s mind, but the fact that the public believes it is a disaster for researchers.”
How we communicate is also important when we try to engage caregivers in treatment plans — particularly ones that take a long time to pay off. A new study by my colleague Nathan Call and his team found that parents might place less value on these ‘delayed outcomes’ than researchers do2. In other words, simply informing them of the benefits of a behavioral intervention is not enough to keep them in the treatment program long-term.

Friday, October 24, 2014

Defying Multiple Stereotypes

A letter in Live Action News defies a number of stereotypes:
Hello, everybody. I’m 19 years old, and 100% pro-life.

I’m also an atheist.

But before you decide to stop reading this, you deserve to know a few things about me.

I was born and raised in a Catholic family. I was baptized a month old, went to Sunday school, and went to church every Sunday. Okay, I went most Sundays. I also know that there are other divisions of Christianity, as well as other religions, and I respect your spirituality, what ever it may be.

I stopped breathing twice the day I was born. They doctor didn’t think I would live very long, but I did. I have ADHD, High-functioning Autism (also known as Asperger’s Syndrome), Gastro-Esophageal Reflux Disease, a thyroid disease, and, for the first four years of my life, was born deaf. I’m not asking for your pity, I’m just letting you know.

I was a Girl Scout for 13 years, which is the max. I’ve earned the Bronze Award, the Silver Award, and I almost earned the Gold Award, the highest honor you can receive. I have even earned a religious award, as well.

With all of those things, you would think that I would be very religious, but that’s not the case. Over the years, my views have changed, and I eventually became an atheist. But what hasn’t changed is my belief that abortion is wrong. It’s completely cruel, no doubt there. Everyday I grieve for the millions of lives that have been taken by the abortion industry.

You might be wondering why I’m telling all of this to you. It’s because I’ve been needing to get this off of my chest for a while, now. So thank you for taking your precious time to listen to what I have to say, and let’s keep on fighting for the lives of the unborn!

Thursday, October 23, 2014

Another Pollution Study

Science 2.0 reports:
Children with autism spectrum disorder, a range of conditions characterized by social deficits and communication difficulties, were more likely to have been exposed to higher levels of certain air toxics during their mothers' pregnancies and the first two years of life compared to children without the condition, according to preliminary findings presented today at the American Association for Aerosol Research annual meeting in Orlando.
Other epidemiologists have linked everything from living near farms to organic food [not really] to autism, and such studies don't actually measure anything, they just find a map of autism and then correlate it to an environmental factor, in this instance pollution and autism instances in southwestern Pennsylvania.

Evelyn Talbott, Dr.P.H., professor of epidemiology at the University of Pittsburgh, and colleagues analyzed data on families with and without ASD living in six southwestern Pennsylvania counties. They correlated autism with increased levels of chromium and styrene. They interviewed 217 families of children with ASD and compared these findings with information from two separate sets of comparison families of children without ASD born during the same time period within the six-county area. The families lived in Allegheny, Armstrong, Beaver, Butler, Washington and Westmoreland counties, and the children were born between 2005 and 2009.

For each family, the team used the Environmental Protection Agency's (EPA) National Air Toxics Assessment (NATA) to estimate the exposure to 30 pollutants known to cause endocrine disruption or neurodevelopmental issues.

Based on the child's believed exposure (they didn't actually measure anything in anyone) [emphasis added]  to concentrations of air toxics during the mother's pregnancy and the first two years of life, the researchers noted that children who fell into higher exposure groups to styrene and chromium were at a 1.4-2X greater risk of ASD, after accounting for the age of the mother, maternal cigarette smoking, race and education. Other NATA compounds associated with increased risk included cyanide, methylene chloride, methanol and arsenic.
Note the bolded text.  This study suffers from the same problem as previous studies of air pollution and autism:  it estimates exposure from location rather than measuring exposure directly.

Wednesday, October 22, 2014

ASD in Michigan

An October 14 release from the Center for Healthcare Research & Transformation:
A report examining current implementation of new autism laws in Michigan, released today by the Center for Healthcare Research and Transformation, reveals a changing environment for autism care.
Under these laws, state-regulated insurance plans must cover diagnosis and medically necessary treatment for children with autism spectrum disorder (ASD) from birth through 18 years and Medicaid and MIChild must now cover a specific evidence-based behavioral therapy, known as applied behavior analysis (ABA), for children with ASD from 18 months through age 5.
The brief, Autism Spectrum Disorder in Michigan, released in partnership with the Michigan Department of Community Health, examines how the new laws have enabled many children to be covered for treatment.
Michigan’s autism policy changes aim to increase access to evidence-based treatments, and what we have seen following implementation is that this is true for many children in Michigan,” says Marianne Udow-Phillips, CHRT director. “For example, 1,300 children with private insurance or Medicaid have received applied behavior analysis therapy.”
In addition to expanding treatment coverage, the Michigan Legislature established a state fund to reimburse insurance carriers and self-funded plans that submit claims for the diagnosis and treatment of ASD. This is particularly important for self-insured plans, which are federally-regulated and are not required to follow these new coverage requirements. As of June 2014, 23 self-insured employers had begun offering the benefit, with many submitting ASD claims to the fund for reimbursement.
This transformation in coverage for autism treatment also brings some challenges in accessing care for families with autistic children. For example, before a child can obtain approved, covered applied behavior analysis therapy (ABA) therapy, Michigan requires that a medical diagnosis of ASD come from a designated provider. Currently, estimated wait times for privately-insured children to be evaluated range between one month and 24 months.
Another factor that can delay treatment is the limited number of credentialed ABA providers in the state. Depending on an individual’s insurance, ABA must be provided or supervised by a board-certified behavior analyst. As of September 2014, there were 248 certified behavior analysts in Michigan, of which fewer than half treated individuals with ASD. An expansion of university training programs may help meet the demand for services in the coming years. For example, MDCH allocated more than $2 million in funding to help several universities expand their training programs for behavior analysts and assistant behavior analysts.

Tuesday, October 21, 2014

Education Department Guidance on Bullying

A guidance from the Education Department's Office for Civil Rights:
While there is broad consensus that bullying is wrong and cannot be tolerated in our schools, the sad reality is that bullying persists in our schools today, and especially so for students with disabilities.In recent years, the Office for Civil Rights (OCR) in the U.S. Department of Education (Department) has received an ever-increasing number of complaints concerning the bullying of students with disabilities and the effects of that bullying on their education, including on the special education and related services to which they are entitled. This troubling trend highlights the importance of OCR’s continuing efforts to protect the rights of students with disabilities through the vigorous enforcement of Section 504 of the Rehabilitation Act of 1973 (Section 504) and Title II of the Americans with Disabilities Act of 1990 (Title II). It also underscores the need for schools to fully understand their legal obligations to address and prevent disability discrimination in our schools.
Today’s guidance follows a long history of guidance issued by the Department in this critical area of disability discrimination. In 2000, OCR and the Office of Special Education and Rehabilitative Services (OSERS) issued joint guidance informing schools that disability-based harassment may deny a student equal educational opportunities under Section 504 and Title II.The 2000 guidance also noted the responsibilities of schools under Section 504 and the Individuals with Disabilities Education Act (IDEA) to ensure that students receive a free appropriate public education (FAPE), and alerted schools that harassment of a student based on disability may adversely impact the school’s provision of FAPE to the student.3 In 2010, OCR issued a Dear Colleague Letter on Harassment and Bullying that provided further guidance concerning when a school’s inappropriate response to bullying or harassment of a student based on disability constitutes a disability-based harassment violation under Section 504 and Title II.4 In 2013, OSERS issued a Dear Colleague Letter on Bullying of Students with Disabilities that, in turn, provided additional guidance to schools that the bullying of a student with a disability on any basis can result in a denial of FAPE under IDEA that must be remedied.5  
Building on OSERS’s 2013 guidance, today’s guidance explains that the bullying of a student with a disability on any basis can similarly result in a denial of FAPE under Section 504 that must be remedied; it also reiterates schools’ obligations to address conduct that may constitute a disability based harassment violation and explains that a school must also remedy the denial of FAPE resulting from disability-based harassment. Following an overview of the federal protections for students with disabilities in schools, the guidance elaborates on the elements of a disability-based harassment violation and a FAPE violation, discusses how OCR generally analyzes complaints involving bullying of students with disabilities on each of these bases, and then concludes with a series of hypothetical examples that illustrate varying circumstances when conduct may constitute both a disability-based harassment violation and FAPE violation, a FAPE violation, or neither. Although by no means exhaustive, in the context of this discussion, the guidance also offers some insight into what OCR might require of a school to remedy instances of bullying upon a finding of disability discrimination. OCR urges schools to consider these hypothetical resolution agreement provisions in proactively working to ensure a safe school environment, free from discrimination, for all students.6
1 These students are bullied or harassed more than their nondisabled peers. See Office of Special Education and Rehabilitative Services (OSERS) 2013 Dear Colleague Letter on Bullying of Students with Disabilities,, at page 2 (“Students with disabilities are disproportionately affected by bullying.”). That letter explains that, “[b]ullying can involve overt physical behavior or verbal, emotional, or social behaviors (e.g., excluding someone from social activities, making threats, withdrawing attention, destroying someone’s reputation) and can range from blatant aggression to far more subtle and covert behaviors. Cyberbullying, or bullying through electronic technology (e.g., cell phones, computers, online/social media), can include offensive text messages or e-mails, rumors or embarrassing photos posted on social networking sites, or fake
online profiles.” Id. Throughout this guidance, the terms “bullying” and “harassment” are used interchangeably to refer to these types of conduct. See Office for Civil Rights (OCR) 2010 Dear Colleague Letter on Harassment and Bullying,, at page 3 (“The label used to describe an incident (e.g., bullying, hazing, teasing) does not determine how a school is obligated to respond. Rather, the nature of the conduct itself must be assessed for civil rights implications.”).
2 OCR-OSERS 2000 Dear Colleague Letter: Prohibited Disability Harassment,

3 The terms “school” and “school district” are used interchangeably in this letter and refer to public elementary and secondary schools that receive financial assistance from the Department.
4 OCR 2010 Dear Colleague Letter on Harassment and Bullying,
5 OSERS 2013 Dear Colleague Letter on Bullying of Students with Disabilities,
6 This guidance addresses only student-on-student bullying and harassment. Under Section 504 and Title II, students  with disabilities are also protected from bullying by teachers, other school employees, and third parties. Such bullying can trigger a school’s obligation to address disability-based harassment, remedy a denial of FAPE, or both. See 34 C.F.R. §§ 104.4, 104.33; 28 C.F.R. pt. 35. OCR recommends that States and school districts consult with legal counsel regarding their responsibilities and duties in cases of bullying that involve school personnel.

Monday, October 20, 2014

A Settlement in Washington State

Annie Zak reported last week at the Puget Sound Business Journal that Regence BlueShield, the largest health insurer in Washington state, settled two class-action lawsuits the previous for $6 million over its lack of coverage of ABA.
The suits, filed in federal district court and King County Superior Court by the families of children with autism, makes Regence the final health insurer among the state's three largest to get taken to court over their lack of coverage for such disabilities.The other two – Premera Blue Cross and Group Health Cooperative — also settled their cases.
According to the advocacy group Autism Speaks, Washington is one of 16 statest hat does not require insurance companies to cover behavioral treatments.
Eleanor Hamburger, an attorney with the plaintiffs' law firm Sirianni Youtz Spoonemoore Hamburger, said she believes one reason these therapies have been neglected by many insurance companies
"A lot of these plans had an exclusion of developmental disability services, and I think this stems from this historical perspective on people with disabilities, that they can't be cured," Hamburger said. "Research has shown that interventions on people with developmental disabilities have a big impact on their lives."
Another reason contributing to the previous lack of coverage is that the Washington state's 2005 Mental Health Parity Act, while mandating coverage for mental health services, said neurodevelopmental therapies may constitute mental health services if they are "medically necessary," according to the lawsuit. That provision meant some insurers could choose not to include autism and other neurodevelopmental treatment.
Part of that $6 million will be used to create a fund for those involved in the class action suit who paid for their own treatments during the period of the lawsuits.

Sunday, October 19, 2014

Latina Mothers and ASD Diagnosis

Jan Blacher et al have an article in Research in Autism Spectrum Disorders titled "In the Eye of the Beholder: Reports of Autism Symptoms by Anglo and Latino Mothers."  The abstract:
Latino children with autism spectrum disorder (ASD) are under-identified and under-diagnosed. Children suspected of ASD (28 Anglo and 55 Latino) were assessed via the Autism Diagnostic Observation Schedule (ADOS) and the mother Intake Form. A sub-sample of 40 children were assessed with the Autism Disagnostic Interview-Revised (ADI-R). The primary objective was to determine whether Anglo and Latino mothers differed in their symptom reports, and whether their children differed in the professional classifications. Anglo mothers reported significantly more developmental concerns and ASD symptoms than Latino mothers, yet Latino children meeting diagnostic criteria for autism on the ADOS obtained higher ASD severity scores than Anglo children. The authors set forth three possible explanations for such discrepancies between parents and professionals in perceptions and reporting of autism symptoms: (1) Latino mothers are not as aware of the symptoms, and thus do not report them; and (2) Latino mothers are aware of general developmental delay but not as concerned as Anglo mothers until social communication deficits become more apparent. (3) Latino mothers’ parenting practices and cultural beliefs about child-rearing might mask both the ASD symptomatology exhibited by their children and their recognition of it.

Saturday, October 18, 2014

Psychiatrists and Autism

At SFARI, Matthew Siegel writes about a mother whose ASD son long suffered from undiagnosed depression:
This mother’s story underscores the tremendous need for psychiatrists who are trained to care for individuals with autism. There are vanishingly few of these professionals.
A study published earlier this year suggests most child psychiatrists are exposed to fewer than ten children with autism or intellectual disability during their two years of training. This is particularly concerning given that autism substantially increases the risk of having a psychiatric disorder such as anxiety, depression or attention deficit hyperactivity disorder.
The lack of psychiatrists with specific training in autism contributes to misdiagnoses and misguided treatments. A 2012 study found that 60 percent of psychiatric diagnoses among people with autism were no longer supported when the assessment took into account behaviors typically seen in autism, such as insistence on sameness or repetitive rocking.

Friday, October 17, 2014

Autism, Ebola, Vaccines, CDC, and Conspiracy Theory

The Centers for Disease Control and Prevention is a major source for information about autism. If people are less confident about CDC, they might be less inclined to believe that information.  So a seemingly unrelated issue -- Ebola -- could affect autism politics. Even before the outbreak, a now-debunked conspiracy theory held that CDC had covered up evidence of a vaccine-autism link.

CBS reports:
Americans' faith in the agency charged with protecting the homeland from the rapidly escalating Ebola outbreak in West Africa -- which has already crept onto U.S. soil -- has dropped sharply since the crisis emerged.
A CBS News Poll has found that positive assessment of the Centers for Disease Control and Prevention has declined dramatically, with only 37 percent of respondents saying the CDC is doing an excellent or good job -- down from 60 percent in a May 2013 Gallup poll.

The CDC is rated more positively by Democrats (49 percent) than Republicans (35 percent).

Officials from the Obama administration, including the president himself, have acknowledged that missteps were made in the handling of the first confirmed Ebola case diagnosed inside the U.S; a Liberian man who died in a Dallas hospital on Oct. 8
Indeed, at iO9, Mark Strauss reports that anti-vaccine activists are already claiming that the Ebola outbreak is plot to divert attention from the conspiracy.

Thursday, October 16, 2014

Boy Autism and Girl Autism

At SFARI, Apoora Mandavilli writes:
After decades of describing autism as a disorder of boys, scientists have only begun exploring how it affects girls and women in the past few years. For example, there is some consensus now that females may need a bigger genetic hit to develop autism and that the current diagnostic tests may miss many girls with the disorder.
Given all that, it comes as a surprise that two new studies, both by reputable research teams, report no detectable differences between boys and girls with autism.
The first, led by Catherine Lord, assessed various aspects of development in 234 boys and 54 girls diagnosed with autism. The study design, described 5 September in the Journal of Autism and Developmental Disorders, was rigorous ... The researchers expected — based on the literature — to find that girls with autism have better verbal skills, poorer nonverbal skills and fewer repetitive behaviors than boys with the disorder. But in fact, they found no significant difference in any of these aspects. (They did find that girls in the control group have better language skills than boys in that group, which is consistent with what’s known about early language development.)

The second study, published 13 September in the same journal by Connie Kasari and her colleagues, is both smaller and more specific. It compared play behavior in 40 girls with autism and 40 boys matched for autism severity, with an average age of 40 months.
There is some evidence that both typically developing girls and girls with autism have better play skills than boys do. But once again, Kasari and her colleagues didn’t find any significant differences in play type or complexity between the boys and girls in their sample.

Wednesday, October 15, 2014

"Autistic Child" Street Signs

Cara Spoto reports at The Journal Times (Racine, WI) about Erin and Jason Krencisz, who are seeking an "Autistic Child" street sign to protect their son.
The family has installed alarms to keep Markus from leaving the house unattended and “bolting out into the street,” but they are hoping a request they currently have before the city’s Traffic Commission will add an extra layer of protection for their son.
The couple has asked the commission to allow for the installation of an “Autistic Child” sign on their north-side block.
Similar to “Blind Child” or “Deaf Child” signs, the warning sign would be aimed at telling motorists that there is a child in the area with a disability who might not be as aware of traffic dangers as other kids.
Erin Krencisz, 33, who is friends with other mothers of children on the autism spectrum, said she decided to ask about getting a sign on her block after hearing that a friend of hers had one installed in Pennsylvania.
“Safety is an issue with him all the time,” she said. “I just thought, ‘you know what? I am doing this.’ ”
Fifth District Alderman Melissa Kaprelian-Becker, who has helped the couple with their request, thinks the request for a sign makes sense.
“There are many different forms of disabilities,” Kaprelian-Becker said. “You need to caution drivers.”
A few months ago, Portsmouth, Virginia, denied a similar request.  WAVY-TV reported:

Last year, WXIX in Cincinnati reported :
An Alexandria [Kentucky] mother has made a difference in her neighborhood that will help other families with children who are battling autism.

Katie Ruschman took simple steps to have an 'Autistic Child Area' sign put on her street; the first in the city.

As the mother of a 5-year old son with autism, Katie wanted to get the word out to drivers that an autistic child is living on this street.

Two months ago, Katie reached out to her friend Andy Schabell, who also serves on Alexandria City Council.

Tuesday, October 14, 2014

Warner Concerned About TRICARE Cuts

The Hill reports:
Sen. Mark Warner (D-Va.) says he is "concerned" by controversial changes to the military's healthcare plan that could leave hundreds of autistic children without a healthcare provider.
In a letter to the Pentagon, Warner calls on Jonathan Woodson, assistant secretary of defense for health affairs, to "postpone" any changes to TRICARE that could jeopardize health coverage for autistic children.
"I urge TRICARE to postpone the implementation of any potential modifications to the coverage of (autism) services until affected military families and providers have had an opportunity to provide their input," Warner wrote.
The Pentagon has since said it will delay the pay cuts as it reviews the proposed changes to TRICARE. But many providers and military families are still concerned.
"As a result, I have heard from several families who are facing an increase in out-of-pocket expenses, a lack of access to critical services and confusion over appropriate policy interpretation," Warner wrote.

Monday, October 13, 2014

Reforms in Connecticut

Autism Speaks reports:
Connecticut Gov. Daniel Malloy has announced a comprensive overhaul of the state's emergency and long term behavioral health care system, including four steps specific to upgrading treatment for children with autism. The reforms were required by legislation enacted after the 2012 mass shooting tragedy in Newtown.
“No child in mental health crisis should have to wait days to get access to the treatment they need," Malloy said. "That is why I am announcing a series of strategies that...can be implemented immediately."
The Connecticut plan calls for short-term improvements to emergency care services which, in line with national trends, have experienced increasing admissions of youths with acute behavioral health issues and delays in discharges. Malloy's plan calls for immediate increases in emergency care capacity with specific accommodations for the autism community.
The longer term changes were developed by the state Department of Children and Families (DCF) as required under Public Act 13-178, legislation enacted following the Newtown tragedy.
In a review of emergency care services required by children in HUSKY, the state's Medicaid program, nearly half the children with autism enrolled in the program needed to visit an emergency room over an 18-month period. Nearly half of those visits were because of behavioral, rather than medical, reasons, versus just 7 percent for the overall HUSKY population.

The Governor's immediate action plan is HERE.

The DCF longterm plan is HERE

Sunday, October 12, 2014

Yet Another Wakefield-Related Scandal

Brian Deer reports that a London court has ruled against a British "warrior mother."
The mother, “E”, who cannot be named so as to protect her son’s identity, concocted a story about how he reacted to an MMR shot in January 1991. She said that he became distressed with fever and then lost speech, eye contact and play immediately following his three-in-one at the age of 18 months.
She claimed that he screamed after immunization, and that this was followed by six hours of convulsions and vomiting, and then six months in a “persistent vegetative state”.
But in a landmark 45,000-word judgment, which entered the public domain last week from the Court of Protection, the mother was dismissed as a manipulative liar. It was found that she had made up the story so as to bring attention to herself and had plied her developmentally delayed son with a mass of sometimes bizarre "biomedical" interventions so as to gain "total control" over his life.
"The critical facts established in this case can be summarized as follows," said High Court judge Mr Justice Baker. "M has autistic spectrum disorder. There is no evidence that his autism was caused by the MMR vaccination. His parents' account of an adverse reaction to that vaccination is fabricated."
It has long been recognized that a substantial number of parents who claim that vaccines injured their children are mistaken, confused, or for less benign reasons not telling the truth. But it is thought that the case of "E" is the first in which a judge has been so openly scornful of the parent of a disabled child, and may reflect a new attitude following the fall of British disgraced former doctor Andrew Wakefield.
Although Wakefield is believed to be incapable of personal embarrassment, awkwardly for him, the mother, “E”, was a leading disciple. She was part of an inner circle of campaigners, even entering her son in a speculative class action lawsuit against MMR manufacturers, evidently knowing that her case was untrue.

Friday, October 10, 2014

Bad Science, Savvy Media Tactics

Sydney Lupkin reports at ABC:
An autism study that was slammed by experts and retracted this week by its publisher is still alive and well on the Internet, thanks to what critics are calling a perfect storm of lax publishing standards.
Experts say the lone study author played fast and loose with statistics to show a link between autism and the MMR vaccine for measles, mumps and rubella, some experts going as far as saying that the author deliberately did this, but the dubious results took off online anyway, quickly going viral.
“There are always going to be those people at the edges of science who want to shout because they don’t want to believe what the data are showing,” said Dr. Margaret Moon, a pediatrician and bioethicist at Johns Hopkins Berman Institute of Bioethics. She said she thought the study author “manipulated the data and manipulated the media in a very savvy and sophisticated way.”
“It’s not good. It’s not fair. It’s not honest. But it’s savvy,” Moon said.
Hooker’s study percolated in anti-vaccination circles for weeks but quickly moved mainstream after CNN iReport –- the cable news network’s “citizen journalism” site –- ran a story titled “Fraud at the CDC uncovered, 340% increased risk of autism hidden from public.” The Aug. 24 story, along with a similar iReport titled “CDC Autism Whistleblower Admits Vaccine Study Fraud,” has garnered more than 786,000 views and 256,000 shares on social media.
Though both iReports were “flagged” for further review by CNN with editor’s notes stating than none of the stories’ claims had been verified, they remain published on the site.
“iReport is a social network for news with more than one million members globally. All content and headlines are user generated,” CNN said in a statement to ABC News. “It has not been determined that the iReport in question violates our community guidelines. However, the content was not vetted nor approved for use on any of CNN's editorial platforms.”
But the now-pulled study is still making the rounds online, thanks in part to two highly produced YouTube videos that compare the alleged cover-up to the Tuskegee syphilis experiment and the Holocaust. The videos, which have received a combined 124,000 views, are narrated by Andrew Wakefield, whose 1998 study linking vaccines and autism was retracted and declared “an elaborate fraud” in 2011 by the British Medical Journal. Wakefield lost his medical license in the ordeal but continues to be a prominent figure in the anti-vaccine community.
“This is the real story of a real fraud,” narrated Wakefield, who continues to be a force in the anti-vaccine community despite losing his medical license. “Deliberate, high-level deception of the American people with disastrous consequences for its children’s health.”

Thursday, October 9, 2014

Stapleton Gets 10-22 Years

MLive reports:
Kelli Stapleton, the mother who tried to kill herself and her violent, autistic daughter by carbon monoxide poisoning, has been sentenced to 10 to 22 years in prison.
Stapleton, 46, was sentenced Wednesday, Oct. 8, following a three-day hearing in Benzie County Circuit Court. She earlier pleaded guilty to first-degree child abuse.
Benzie County Prosecutor Sara Swanson issued the following statement:
“My office strives to protect our most vulnerable victims,” she said. “In this case, Isabelle’s autism did not mean she deserved less protection. Her life has value, and she deserves justice for the attempt on her life. The right outcome was achieved in this case. The defendant was sentenced as recommended by our state’s sentencing guidelines, and justice was obtained for Isabelle.”
Stapleton's case has gained national attention. She was recently featured on "The Dr. Phil Show."
The case pitted those who believe Stapleton was overwhelmed by her 14-year-old daughter Issy's autism, and those who believed she just wanted to be rid of the troubled girl.

Wednesday, October 8, 2014

Delay in TRICARE Cuts

The Hill reports:
The Pentagon is delaying controversial healthcare spending cuts after hundreds of military families complained it would have left their autistic children without coverage, according to an official from the Department of Defense.
Pentagon officials announced late Wednesday they are halting a plan to slash TRICARE payments in half for providers who work with autistic children.
This comes after TRICARE providers warned they would stop treating more than 1,100 autistic children, because of the massive pay cuts.

“The department understands the concerns caused by the rate change,” an official from the Department of Defense told The Hill. “In order to address these concerns, the department has commissioned an independent view of the (program).”
TRICARE officials began informing key congressional staffers Wednesday evening they would delay the pay cuts until April 20, 2015 as they order an independent review of the changes.
Other changes to the program will go into effect as scheduled later this month, the DOD official said.
The announcement came about an hour after The Hill published a story about the planned cuts.
The pushback had been hard. WAVY-TV in Hampton Roads reported last week:

Tuesday, October 7, 2014

A Death on a Bus

Buses are dangerous places for autistic youths. Two years ago, Kenneth Pierre-Louis, an 18-year-old with autism, died in a Miami-Dade County public school bus.  The Miami Herald recently reported:
Pierre-Louis’ family sued the county school board this week, saying that their loved one was left in his seat — seizing, covered in urine and in the throes of a heart attack — for 15 minutes before any of the four adults on the bus came to help.
According to the lawsuit, he died without any medical attention from employees because the young man, due to his handicap, had recently attacked one of the employees on the bus.
A bus driver and aide gave Miami-Dade police a different version. They said that Pierre-Louis began to seize as they pulled up to his house, and that 911 was called right away.
Through a district spokeswoman, School Board Attorney Walter Harvey declined to comment Friday.

Paramedics noted in their report that witnesses said Pierre-Louis started seizing 15 minutes before they arrived.

[Gregg] Schwartz, the family’s attorney, said there were problems with the police investigation into the young man’s death. Only two of the adults on the bus that day have been interviewed by police, he said. Schwartz only discovered there were more witnesses after speaking with Pierre-Louis’ mother and requesting public records from the school board, he said.

“A kid died on the bus. You would think police would talk to all of them,” Schwartz said.

Read more here:

Monday, October 6, 2014

Social Media Shaming

Marlene Sokol writes at The Tampa Bay Times:
Social media shaming increasingly is a tactic parents employ when calling, emailing or sitting through individual educational plan, or IEP, meetings does not get the results they seek.
School officials say they do what is best for children, according to the law and best practices, regardless of what parents might say on social media.
But some parents believe otherwise. [Amanda] Taylor says her campaign got fast attention for Alexis, who has spina bifida, although the issues are far from resolved.
In South Tampa, Henry Frost, who has autism, was able to attend his neighborhood school after a Facebook campaign in late 2012.
"I Stand With Henry," which featured a video that paid homage to Dr. Martin Luther King Jr., was Henry's idea, said his mother, Lauri Hunt. "It's his platform," she said.
In recent weeks Henry posted that Wilson Middle School took him off the rolls after he missed too many days because of medical issues. On Sept. 16, Henry posted that he's back in Wilson

Sunday, October 5, 2014

Conspiracy, Retracted

Previous posts mentioned a conspiracy theory about CDC data. Matt Carey writes at Left Brain/Right Brain:
About two months ago an autism parent published a study: a “reanalysis” of a CDC dataset. That study: Measles-mumps-rubella vaccination timing and autism among young african american boys: a reanalysis of CDC data.
Here’s a screenshot of how the article looks online today (click to enlarge):
he retraction reads:
The Editor and Publisher regretfully retract the article [1] as there were undeclared competing interests on the part of the author which compromised the peer review process. Furthermore, post-publication peer review raised concerns about the validity of the methods and statistical analysis, therefore the Editors no longer have confidence in the soundness of the findings. We apologise to all affected parties for the inconvenience caused.

Saturday, October 4, 2014

Awareness and Hispanics

Many posts have discussed demographic differences in awareness and diagnosis rates. From SFARI:
Many Latino parents in the U.S. know little about autism and some have never heard of the disorder before, finds a study published 1 September in the Journal of Developmental and Behavioral Pediatrics. Latinos also tend to normalize autism symptoms or view them as a sign of family problems, such as an inattentive parent.
The findings may help explain why Latino children with autism are diagnosed an average of one year laterthan their white, non-Latino counterparts, as we reported last year.
The researchers used focus groups and one-on-one interviews to probe autism awareness among 30 Latino parents of typically developing children living in the Portland, Oregon, area. Of the participants, 23 are women, most of whom were born in Mexico and did not finish high school.
The study reflects a growing appreciation of how cultural factors may affect the diagnosis and treatment of autism. Symptoms of the disorder vary across cultures, pointing to the need for culturally specific screening and diagnostic tools. The new work is unusual because it uses qualitative, anthropological research methods to understand how a particular community perceives autism.
It would be easy to overlook its importance because autism research is usually quantitative. However, though small, the study reminds us how an autism diagnosis can unfold in the real world and affect families.
In the study, parents viewed and then discussed a short film about a 3-year-old Latino boy whose mother becomes concerned about his behavior. The boy is later diagnosed with autism. The film and discussion were in Spanish with 16 of the study participants and in English with the remaining 14.
The research team, which includes several bilingual and bicultural members, studied transcripts from the focus groups and interviews to identify common themes in parental perceptions of autism. They then validated these themes with two Latina mothers: one who has a child with autism and one who has a typically developing child.

Friday, October 3, 2014


Joseph Stromberg writes at Vox:
On the whole, autism is characterized by difficulty in social interactions and communication. But the diagnosis of autism covers people with a huge range of behaviors and symptoms, which are often arranged along the autism spectrum.

These different forms of autism appear to be triggered by different, interacting causes. It's not genetics or environment, but both — a combination of inherited genes, random genetic mutations, and environmental factors like a mother's immune system and nutrition during pregnancy. In most cases, scientists still aren't sure exactly how these factors actually lead to the disorder.
Further, there are many other factors that are still poorly understood and need to be more fully investigated. Before proceeding, though, it's necessary to mention one thing that has been ruled out: vaccines. Years of research have turned up absolutely no link between vaccines and autism.
The article contains a number of useful links to research findings.

Thursday, October 2, 2014

Days of Awe

At Fox and Hounds, Michael Bernick reflects on the meaning of the Days of Awe between Rosh Hashanah and Yom Kippur
Which brings us to a gathering to occur soon after Yom Kippur this month: the biennial gathering on greater employment for California’s neurodiverse workforce—adults with autism, cerebral palsy, dyslexia, learning disabilities. The gathering is hosted by AASCEND (the Autism Asperger Syndrome Coalition for Education Networking and Development) and the Autism Spectrum Studies program at San Francisco State University. It is a one day event at San Francisco State (link here).
AASCEND has links to government efforts. But for the most part it operates outside of government, on mutual support and good deeds. AASCEND started as a support group for the adult autism community. But it has developed over the years into far more.
It is a network in which members act to help and protect each other. We get involved to help out if one of our members is taken advantage of, or facing homelessness, or in need of assistance with legal issues. For example, in recent months , our AASCEND co-chair Camilla Bixler heard that one of our members was losing the room he had rented for years in a house. She got on the phone for days to locate a new room. When another of our members was swindled out of $1200 in a deal to purchase a used car, she accompanied him and his father to small claims court to get the deal nullified.
Regarding employment, we try to use our personal networks to get job leads. We often are not successful—no form of good deeds is as challenging as job placement. But we quietly get up and start the contact process each morning.
Only a few of us in AASCEND are Jewish, the majority are not. Yet, no group I know more represents the spirit of “tzedakah”—direct service to others with humility.

Physical Fitness and ASD

At Autism Research and Treatment, Kiley Tyler and colleagues have an article titled "Physical Activity and Physical Fitness of School-Aged Children and Youth with Autism Spectrum Disorders."  The abstract:

Autism spectrum disorder (ASD) is characterized by impairments in social communication deficits and the presence of restricted and repetitive behaviors, interests, or activities. Literature comparing the physical activity and fitness of children with ASD to typically developing peers is in need of attention. The purpose of this investigation was to examine the physical activity and fitness of school-aged children with ASD in comparison to typically developing peers . Participants with ASD completed diagnostic and developmental assessments and a series of physical fitness assessments: 20-meter multistage shuttle, sit-and-reach test, handgrip strength, and body mass index. Physical activity was measured using accelerometry and preestablished cut-points of physical activity (Freedson et al., 2005). MANCOVA revealed significant between-group effects in strength , while ANCOVA revealed significant between-group effects in sedentary , light, moderate , and total moderate-to-vigorous physical activity. Children with ASD are less physically active and fit than typically developing peers. Adapted physical activity programs are one avenue with intervention potential to combat these lower levels of physical activity and fitness found in children with ASD.

Wednesday, October 1, 2014

An App

 Reading this otherwise positive story, a hard-bitten autism parent will hear alarm bells go off at the bolded passage below.  Thought bubble: "Are they going to use this doodad as excuse to cut services?"

An app has changed the way young people with autism and developmental disabilities in Mississippi can communicate and grow.
The app—called TalkingTiles—is being used in the Mississippi Adolescent Center, which is part of the state’s Department of Mental Health. Many of the center’s patients have autism and are nonverbal, Donna Horton, director of client services for the center, said in an interview. The app is a way for the children to communicate what they want without using words, like choosing what to eat for a snack.
They can use the app to develop a range of skillsets from math and reading to learning about colors and how to recognize signs, Horton said.

The app operates on Microsoft Dynamics CRM and is a Caretiles application from CoCENTRIX, a company that works to find solutions for the health and human services community.
The tiles surface as different pages in the app, said Bill Keyes, senior vice president of marketing and sales for CoCENTRIX. They could be videos, pictures or words and patients can use them to communicate.
The idea is to engage patients with apps that tie into their specific care plan and let’s them engage in their recovery process, Keyes said. It is also individually designed for different types of patients, he said, in order to cater to their needs. Keyes said it’s comparable to Windows 8, but with tiles.
Mississippi is getting ready to expand the app’s reach statewide and plans to implement it with the Department of Mental Health’s ALS and Alzheimer’s unit later this year. With ALS, Horton said, a person’s ability to speak decreases over time. With the app, there are hopes that more people could use it to help them communicate.
A patient’s progress is also tracked so that a patient’s group of caregivers can see their progress and determine the next step, Keyes said.
Another goal of the app is that states can save money on long-term residential care for patients which can be costly. Patients are also given the chance to become more independent. [emphasis added]

In The Autistic Brain, Temple Grandin explains:
Tablets, for example, have a tremendous advantage over plain old computers, even laptops: You don't have to take your eyes off the screen. Usually typing is a two-step process. First you look at the keyboard, then you look at the screen to see what you have typed. That could be one step two many for someone with severe cognitive problems. Before tablets, a therapist would have to mount the keyboard of a desktop computer on a box so that it was right below where the print was appearing on the screen.In tablets, however, the keyboard is actually part of the screen, so eye movement from keyboard to the letter being typed is minimal. Cause and effect have a much clearer  correlation. That difference could well be meaningful in terms of allowing people with extreme sensory problems to tell us what it's like to be them.