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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, http://www.ed.gov/policy/speced/guid/idea/memosdcltrs/bullyingdcl-8-20-13.doc, 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, http://www.ed.gov/ocr/letters/colleague-201010.pdf, 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,
http://www.ed.gov/ocr/docs/disabharassltr.htm

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, http://www.ed.gov/ocr/letters/colleague-201010.pdf.
5 OSERS 2013 Dear Colleague Letter on Bullying of Students with Disabilities,
http://www.ed.gov/policy/speced/guid/idea/memosdcltrs/bullyingdcl-8-20-13.doc.
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.