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Wednesday, December 12, 2018

Protesting Restraint

In The Politics of Autismdiscuss the use of restraint and seclusion.  Many posts have mentioned these techniques, both in schools and facilities for people with disabilities.

Sawsan Morrar at The Sacramento Bee:
A small group of former students, advocates and parents gathered in front of the California Department of Education Monday to demand the closure of a school where a teen with autism stopped breathing and later died after being restrained by staff.
Nearly a dozen protestors said they were demanding the immediate closure of Guiding Hands School in El Dorado Hills. Those gathered also said they believed state regulators didn’t do enough to prevent the death of Max Benson, 13, who died Nov. 29, a day after school staff put him in a face-down restraint for an extended period of time.
Katie Kaufman, 20, a former Guiding Hands student who attended the school for two years until she left in 2012, attended Monday’s rally. Kaufman said she was put in a face-down prone restraint multiple times, and was once body slammed onto a cement floor resulting in a bloodied chin.
Doug Johnson at Fox40 Sacramento:

Tuesday, December 11, 2018

The Autism Services Market

 The Politics of Autism includes an extensive discussion of autism service providers.

Ronit Molko at Forbes:
The autism services market is estimated to be worth around $5 billion to $7 billion annually and it’s growing, with a total addressable market estimated between $50 billion and $90 billion. The majority of the services provided to individuals with autism are behavioral services and are provided at home, in school, or in a clinic setting. Most of these services are based on the science of applied behavior analysis, or ABA, which is a scientific method that employs specific techniques and principles to impart skills and bring about meaningful changes in behavior. ABA is the most widely funded treatment option that private insurance companies, or state or federal programs, will cover.
 While the current national players are acquiring smaller providers to grow their platforms, there are still many underserved communities and many opportunities for organic growth. As of 2016, it was reported that the top nine multi-site providers accounted for nearly $400 million in revenues – almost 40 percent of the market share, but the market, and these companies, have grown considerably in the past two years. Despite the efforts by investors to consolidate the market, there is still space for more providers on the national level.

Monday, December 10, 2018

A Death in El Dorado Hills

In The Politics of Autismdiscuss the use of restraint and seclusion.  Many posts have mentioned these techniques, both in schools and facilities for people with disabilities.

At a California school, an autistic student stopped breathing after nearly an hour under prone restraint. Sawsan Morrar and Phillip Reese at The Sacramento Bee:
The boy, identified by the Sacramento County Coroner’s Office as Max Benson, 13, became unresponsive while in the restraint hold and died a day later at UC Davis Medical Center.
The incident took place Nov. 28 at Guiding Hands School on Windplay Drive, according to the El Dorado County Sheriff’s Office. Benson became unresponsive while being held in a ‘prone restraint’ for nearly an hour, according to a source familiar with the investigation.
In a letter sent to the school’s site administrator, Cindy Keller, on Dec. 5 from the California Department of Education and released to The Sacramento Bee through a California Public Records Act request, state regulators found “sufficient evidence” that the facility had violated multiple state rules governing how and when physical restraints can be used on students.
Those violations included using an emergency intervention — the prone restraint — for “predictable behavior,” using an emergency intervention as a substitute for the student’s personally-designed behavior intervention plan and using the restraint for longer than necessary.

Sunday, December 9, 2018

Social Media and Twice-Exceptional Students

 In The Politics of Autism, I examine the role of social media in the development of the issueSocial media can spread vaccine disinformation, but they can also provide autistic people and their families with a way to connect with one another and to press for government action.

Twice-exceptional students are both gifted and disabled.  Many are autistic. At Education Week, Sasha Jones writes:
Twice-exceptional parents are not the first to take advantage of online connection, offering support and information to those hungry for it, and even driving state and national-level change. The advocacy group Decoding Dyslexia, for example, grew out of social media and now has branches in all 50 states, 42 of which have passed dyslexia-specific laws.
Robbi Cooper, a parent involved in policy and advocacy at Decoding Dyslexia Texas, says that social media connects advocates involved in various parts of the legislative process and builds support from lawmakers and administrators.
"Social media allows the door to open when the door's not locked. If the door is locked, then they won't let you in—but that doesn't mean there's nothing you can do," Cooper said, indicating that continued growth and research can serve as the key. "Once they start listening to you and start taking you seriously, then they unlock the door."

Saturday, December 8, 2018

Unvaccinated in Oregon

Blair Stenvick at Portland Mercury:
In Oregon, where both libertarians and natural lifestyle devotees abound, the anti-vaccination mindset is particularly strong. At 7.5 percent, Oregon currently has the highest percent of kindergartners in the country whose guardians claim exemptions for vaccinations on philosophical or religious grounds. That’s a full percentage point higher than what Oregon recorded in 2017—and the figure has risen steadily since the early 2000s.
“There’s an extraordinary amount of information, much of it wrong, some of it right, on the internet,” says State Representative Mitch Greenlick, who chairs the health committee in the Oregon House of Representatives. “This is part of a wave of anti-science attitudes in the country, and even the state.”

Oregon parents are generally required to have their kindergartners vaccinated against diphtheria, measles, mumps, rubella, polio, chickenpox, Hepatitis A and B, and tetanus. But there are exemptions for kids who have medical conditions that would make vaccines dangerous—and for kids whose parents cite religious or philosophical objections to vaccines.
In 2013, Oregon passed a law requiring that parents who claim non-medical vaccine exemptions must either watch an hour-long online video about vaccines produced by the Oregon Health Authority (OHA) or discuss vaccines with a medical professional. But the law has failed to make a meaningful impact on vaccination rates: While Oregon’s rate dropped in 2015 from 7 percent to 5.8 percent, it climbed steadily to 7.5 percent between 2015 and 2018, making the exemption rate higher than before the law went into effect.

Friday, December 7, 2018

Bad Data on Special Ed Teacher Employment

Uncertainty is a major theme of The Politics of Autism.  Much of the uncertainty stems from the state of the science.  Some stems from bad data.

Christina A. Samuels and Alex Harwin at Education Week:
For more than four decades, the U.S. Department of Education has asked states to submit information on special education teacher employment, along with a raft of other information that the Individuals with Disabilities Education Act requires to be collected.

But the employment numbers that are submitted to the federal government are sometimes wrong—wildly so. In some cases, state data managers say the mistake is theirs. In other cases, state officials say they aren't sure where the federal government got the numbers, even though states are the ones responsible for submitting them.
Mississippi is another one of several states with implausible personnel numbers. Federal records show the special education teacher count at 3,770 for the 2005-06 school year. The number of teachers reported in federal records drops to 910 in the 2010-11 school year. It jumps again to 4,145 teachers in 2011-12. For 2015-16, the number of special education teachers reported in the state is 5,086.

Patrice Guilfoyle, the director of communications for the Mississippi education department, said that the state's records show that it has had around 4,000 to 5,000 special education teachers over the past decade. She could not explain the federal numbers.

Thursday, December 6, 2018

IDEA Full Funding

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act

A release from Senator Chris Van Hollen (D-MD):
Today U.S. Senator Chris Van Hollen (D-Md.) introduced the Keep Our Promise to America’s Children and Teachers (PACT) Act, which would put Congress on a fiscally-responsible path to fully fund Title I and the Individuals with Disabilities Education Act (IDEA) on a mandatory basis.
“When our children have access to a first-rate, quality education not only do they succeed, but our economy and our entire country succeed. Congress had the right intentions when it passed Title I and IDEA, but we have fallen short on the promises in the law to fully fund these critical programs. It’s time we kept our promises to kids today and to future generations. The Keep Our PACT Act will make sure we do just that,” said Senator Van Hollen.
Title I, which gives assistance to America’s highest-need schools, is a critical tool to ensure that every child, no matter the zip code, has access to a quality education. However, it has been deeply underfunded, shortchanging our most vulnerable students living in poverty. According to the Alliance to Reclaim Our Schools, the Title I formula was underfunded by $347 billion from 2005-2017. Maryland alone was shortchanged by $4.7 billion.
Similarly, IDEA calls on the federal government to fund 40 percent of the cost of special education, but Congress has never fully funded the law. Currently, IDEA state grants are funded at just 14.7 percent. In the state of Maryland, IDEA was underfunded by $316 million in 2017 alone and by nearly $3.5 billion between 2005 and 2017.
The Keep Our PACT Act would create a 10-year mandatory glide path to fully fund both Title I and IDEA, ensuring that education is a priority in the federal budget. It is supported by the National Education Association, the American Federation of Teachers, the Alliance to Reclaim Our Schools, and AASA, the School Superintendents Association.

Wednesday, December 5, 2018

The Number of Special Ed Teachers Has Fallen

 In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act.

Christina A. Samuels and Alex Harwin report at Education Week:
The number of special education teachers nationally has dropped by more than 17 percent over the past decade, a worrisome trend in a career path that has seen chronic shortages for years.

An analysis of federal data by the Education Week Research Center shows that while the number of special education teachers was dropping, the number of students with disabilities ages 6 to 21 declined by only about 1 percent over the same time period. And as a whole, the number of teachers in all fields has gone up slightly over the past decade, as has overall enrollment.

For the 2015-16 school year, which offers the most up-to-date data, there was one special education teacher for every 17 students with disabilities. That's more special education students per special educator than the overall teacher-student ratio, which has held steady at about 1 to 16 for the past decade.

Tuesday, December 4, 2018

Antivax Sentiment Spreads Worldwide. And So Does Measles.

Angela Giuffrida reports at The Guardian:
Italy’s health minister has sacked the entire board of the Higher HealthCouncil, the country’s most important committee of technical-scientific experts who advise the government on health policy.
In a move on Monday night that shocked Italian scientists, Giulia Grillo, from the Five Star Movementa vaccine-sceptic party that has supported unproven cures for cancer – said it was “time to give space to the new”.
“We are the #governmentofchange and, as I have already done with the appointments of the various organs and committees of the ministry, I have chosen to open the door to other deserving personalities,” she wrote on Facebook.
The decision will mean the replacement of 30 board members, including the president, Roberta Siliquini, the head of the school of hygiene and preventive medicine at the University of Turin who was nominated in December 2017 by the former health minister Beatrice Lorenzin.
Zachary Young at Politico Europe reports that social media have helped antivax sentiment spread broadly, affecting France.
And if online activity in the U.S. is any indication, some of the vaccine skepticism in Europe could be driven by Russian bots.
In the online war for public opinion on vaccines, the French government is being overwhelmed. According to an October report from the European Commission, only 69.9 percent of French people agree that “vaccines are safe,” placing the country of Louis Pasteur — the 19th century biologist who discovered the principles of vaccination — 26th in the EU28 totem pole, ahead of only Bulgaria and Latvia. When it comes to the seasonal flu vaccine, France ranks last, with 51.8 percent of respondents feeling secure.
Part of the reason that France has fallen so low in EU rankings has to do with anti-vaccination ideas spreading virally on social media, according to health officials and observers of online activity. According to an April report by Printemps Prevention, a preventative health nonprofit, 18 of the 25 most-viewed YouTube vaccines videos in France take a skeptical position. On search engines, the report shows, anti-vaccine queries have increased by 130 percent over five years.

Eleven EU member countries currently fall below the relevant threshold for measles, which requires 93-95 percent vaccination rates, and outbreaks have surged on the Continent since 2017. Whereas the once-rampageous disease was “eliminated” from the Americas in 2016, Europe has this year registered some 41,000 measles cases causing 40 deaths, according to the World Health Organization.
Among 27 European countries measured by the OECD, France has the lowest rate of childhood vaccination for the disease.
Marie Werbregue, from central France, became mobilized in the debate after her daughter became autistic, which she attributes to vaccination. Now, she is president of the association “Info Vaccins France” and co-moderates a 10,319-member Facebook group on the subject.

From the World Health Organization:
Reported measles cases spiked in 2017, as multiple countries experienced severe and protracted outbreaks of the disease. This is according to a new report published today by leading health organizations.

Because of gaps in vaccination coverage, measles outbreaks occurred in all regions, while there were an estimated 110 000 deaths related to the disease.

Using updated disease modelling data, the report provides the most comprehensive estimates of measles trends over the last 17 years. It shows that since 2000, over 21 million lives have been saved through measles immunizations. However, reported cases increased by more than 30 percent worldwide from 2016.

The Americas, the Eastern Mediterranean Region, and Europe experienced the greatest upsurges in cases in 2017, with the Western Pacific the only World Health Organization (WHO) region where measles incidence fell.

“The resurgence of measles is of serious concern, with extended outbreaks occurring across regions, and particularly in countries that had achieved, or were close to achieving measles elimination,” said Dr Soumya Swaminathan, Deputy Director General for Programmes at WHO. “Without urgent efforts to increase vaccination coverage and identify populations with unacceptable levels of under-, or unimmunized children, we risk losing decades of progress in protecting children and communities against this devastating, but entirely preventable disease.”

Monday, December 3, 2018

Almost a Third of Autistic Kids Do Not Get Treatment

In The Politics of Autism, I write:
A child’s chances of getting an autism label vary by geography as well as social class. On a broad level, state definitions of autism are consistent with the federal definition. At the practical level, there are differences, especially when it comes to assessing social and emotional development, health, vision, hearing, and motor skills. In 2011, seven percent of students receiving IDEA services nationwide had an autism determination. But the figures varied by state. The states with the highest share of IDEA students with identified autism were Minnesota (12.8 percent), Oregon (10.6 percent), and Connecticut (10.1 percent). The lowest were Iowa (1.1 percent), Puerto Rico (2.1 percent), Montana (2.8 percent), Oklahoma and West Virginia (3.7 percent each).  

At JAMA Pediatrics, Guifeng Xu and colleagues have an article titled "Prevalence and Treatment Patterns of Autism Spectrum Disorder in the United States, 2016." 
Key Points
Question What are the current prevalence and treatment patterns of autism spectrum disorder (ASD) among US children?
Findings According to data from the 2016 National Survey of Children’s Health, among 43 032 US children aged 3 to 17 years, 2.79% were ever diagnosed as having ASD. Among 1115 children with current ASD, 43.3% were treated with behavioral treatment only, 6.9% with medication treatment only, 20.3% with both behavioral and medication treatments, and 29.5% with neither treatment.
Meaning The prevalence of ASD is relatively high in the United States, and about one-third of US children with ASD did not receive behavioral or medication treatment.
Importance Autism spectrum disorder (ASD) is a complex neurodevelopmental disorder. Previous surveys have reported a steady increase in ASD prevalence in US children over the past decades. Several behavioral therapies and medications have been developed to treat the symptoms of ASD; however, little is known about the current status of treatment usage for children diagnosed as having ASD.
Objective To estimate the prevalence and treatment patterns of ASD among US children using nationally representative data.
Design, Setting, and Participants This study used data from the 2016 National Survey of Children’s Health, a nationwide, population-based, cross-sectional survey. We included 43 032 children aged 3 to 17 years. Data were collected through questionnaires completed by a parent or guardian. Data were analyzed from February 2018 to March 2018.
Main Outcomes and Measures Outcome variables included ASD diagnosed by a physician or health professional and the use of behavioral treatment or medication treatment among children with ASD.
Results Of the 43 032 included participants, 22 072 (51.3%) were male, and the mean (SD) age was 10.7 (4.4) years. The weighted prevalence of ever-diagnosed ASD and current ASD were 2.79% (95% CI, 2.46-3.12) and 2.50% (95% CI, 2.21-2.79), respectively. The state-level prevalence of ever-diagnosed ASD varied from 1.54% (95% CI, 0.60-2.48) in Texas to 4.88% (95% CI, 2.72-7.05) in Florida. Nationally, about 70% of children with current ASD (70.5%; 95% CI, 65.1-75.8) were treated; 43.3% (95% CI, 37.4-49.2) received behavioral treatment only, 6.9% (95% CI, 3.7-10.1) received medication treatment only, and 20.3% (95% CI, 16.5-24.1) received both behavioral and medication treatments. The remaining 29.5% (95% CI, 24.2-34.9) of children with current ASD did not receive either behavioral or medication treatment.
Conclusions and Relevance This study showed that the prevalence of ASD in the United States was relatively high, and it varied substantially across US states. Almost 30% of US children with ASD did not receive behavioral or medication treatment, which calls for a critical need to understand and address the barriers for those children to receive appropriate treatments.

Sunday, December 2, 2018

Pro-Vaccine State Legislation

A release, by Lauren Ingeno, from Drexel University:
Despite an uptick in anti-vaccine legislation proposed by state lawmakers in recent years, pro-vaccine bills were more likely to be enacted into law, according to a new study by researchers at Drexel University. The results were published this week in the American Journal of Public Health.

"It is reassuring to know that the legislative process is working in favor of public health. It is concerning that there are so many anti-vaccination bills introduced, but our study shows that those bills are rarely signed into law," said study principal investigator Neal D. Goldstein, PhD, an assistant research professor in Drexel's Dornsife School of Public Health.
The use of nonmedical exemptions from vaccination requirements increased nationwide by 19 percent from 2009 to 2013, which has led to a disease resurgence in communities across the United States. However, both pro- and anti-vaccination policies vary widely state-by-state. The Drexel study, which analyzed all proposed and enacted vaccine legislation at the state level between 2011 and 2017, offers one of the first in-depth pictures of the country's vaccination policy climate.
"If you only look at current laws, that's history. But analyzing proposed bills gives us a flavor for what's happening now, and perhaps for what's to come. Are we seeing trends that may be concerning for the future?" Goldstein said.
During the seven-year study period, 175 bills related to immunization exemptions were introduced in state legislatures, with the volume increasing significantly over time. In 2011, there were 14 total bills proposed, compared to 41 in 2017.
The researchers found that the majority of vaccination legislation activity between 2011 and 2017 was consolidated to four states: New Jersey (29 total bills), New York (28), West Virginia (15) and Mississippi (12). New Jersey introduced the highest number of anti-vaccination bills (24), while New York and West Virginia introduced 14.
Of the 175 vaccination bills introduced, 92 (53 percent) were classified as anti-vaccine, and 83 (47 percent) were classified as pro-vaccine. Thirteen of the total number of bills (7 percent) were signed into law.
Although the majority of proposed legislation would have expanded access to vaccine exemptions, bills that limited exemptions -- meaning they eliminated or made it more difficult for parents to opt their children out of mandatory school immunization requirements -- were overwhelmingly more likely to be enacted into law. Only one anti-vaccination bill, 2011 Washington bill SB5005, ultimately became law. The law broadened the types of health care providers, beyond licensed physicians, who could sign a vaccination exemption form.
Pro-vaccine laws are an important protector for the public's health, according to Goldstein, because such a high proportion of the population needs to be vaccinated to prevent an outbreak of contagious diseases. Measles, for example, require about 95 percent of the population to be immunized. Those who choose not to vaccinate their children for non-medical reasons are putting communities at risk, evidenced by states across the country experiencing record-high disease outbreaks this year, Goldstein said.
The recent anti-vaccination movement gained momentum after a study published in The Lancet in 1997, which suggested a link between the MMR (measles, mumps and rubella) vaccine and autism spectrum disorder. The study was subsequently debunked and retracted, and its author, Andrew Wakefield, lost his medical license.
However, that has not stopped a small, vocal minority of Americans from continuing to spread misinformation about the perceived health risks of vaccines. And Goldstein's recent study shows that the dangerous rhetoric has found its way into state legislatures.
New Jersey Assembly Bill 497, for example, would have exempted children under six years of age from the hepatitis B vaccine requirement if the child's mother tested negative for hepatitis B during her pregnancy. The bill explicitly linked "multiple sclerosis, chronic arthritis, autism spectrum disorder, and diabetes" as a "diseases or adverse unintended consequences associated with receipt of the hepatitis B vaccine." There is no scientific evidence to support the bill's claims, Goldstein said.
"Several of the bills we saw were clearly not evidenced-based," he added. "This serves as an opportunity for pro-vaccination constituents to become involved in the legislative process and ensure that state laws reflect the state of science."
Jonathan Purtle, DrPH, an assistant professor at Drexel's Dornsife School of Public Health, and Joanna S. Suder, JD, deputy attorney general at the Delaware Department of Justice, co-authored this paper.V

Saturday, December 1, 2018

Bush and Disabilities

In The Politics of Autism, I discuss the civil rights of people with autism and other disabilities

In 1990, President George H.W. Bush signed PL 101-476, which changed the title of the Education for All Handicapped Children Act to Individuals with Disabilities Education Act (IDEA). The new law added two categories of eligibility to federal special education law -- autism and traumatic brain injury -- and mandated transition services.

In the same year, Bush also signed the Americans with Disabilities Act (ADA), the nation's first comprehensive civil rights law addressing the needs of people with disabilities, prohibiting discrimination in employment, public services, public accommodations, and telecommunications.

The Bush administration's role in ADA was not passive.  As Joseph P. Shaprio explained in his book, No Pity: People with Disabilities Forging a New Civil Rights Movement, EEOC Chairman Evan Kemp and White House counsel C. Boyden Gray played key roles in passing the law.

And today, America welcomes into the mainstream of life all of our fellow citizens with disabilities. We embrace you for your abilities and for your disabilities, for our similarities and indeed for our differences, for your past courage and your future dreams. Last year, we celebrated a victory of international freedom. Even the strongest person couldn't scale the Berlin Wall to gain the elusive promise of independence that lay just beyond. And so, together we rejoiced when that barrier fell.
And now I sign legislation which takes a sledgehammer to another wall, one which has for too many generations separated Americans with disabilities from the freedom they could glimpse, but not grasp. Once again, we rejoice as this barrier falls for claiming together we will not accept, we will not excuse, we will not tolerate discrimination in America.
With, again, great thanks to the Members of the United States Senate, leaders of whom are here today, and those who worked so tirelessly for this legislation on both sides of the aisles. And to those Members of the House of Representatives with us here today, Democrats and Republicans as well, I salute you. And on your behalf, as well as the behalf of this entire country, I now lift my pen to sign this Americans with Disabilities Act and say: Let the shameful wall of exclusion finally come tumbling down. God bless you all.

Friday, November 30, 2018

Case Against Subminimum Wages

In The Politics of Autism, I discuss the employment of adults with autism and other disabilities.

At The Hill, Mark Riccobono, President of the National Federation of the Blind, arguest against subminimum wages:
The Fair Labor Standards Act, passed in 1938, was a landmark law enacted with the specific intention of protecting the rights of American workers. It established such modern norms as a 40-hour workweek, overtime pay, restrictions against child labor, and the federal minimum wage. However, it also introduced an exception to that minimum wage with the inclusion of Section 14(c), which allows employers to obtain a special wage certificate granting the permission to pay people with disabilities at a rate “lower than the minimum wage.” There it is in black and white, discrimination codified into United States law.
To put it bluntly, Americans with disabilities do not want your pity. We want your respect. We want you to respect us enough to extend the opportunity to work in a meaningful job, to work side-by-side with you toward a common goal, and most importantly to earn a living wage so that we can be independent.

The American Dream is generally understood as the opportunity for anyone, regardless of background, to achieve success and prosperity through hard work and determination. Section 14(c) creates a second class of citizens, based solely on disability, that are unable to experience the benefits of that dream. Americans with disabilities are determined, we are willing, and we are most definitely able to work hard, but regardless of how hard we work, success and prosperity will always be well out of reach as long as Section 14(c) is on the books. Our nation’s commitment to end discrimination against people with disabilities must include ending the payment of subminimum wages, otherwise it is nothing more than a hollow platitude.

Thursday, November 29, 2018

Diagnosis Disparity

Dr. John N. Constantino, Anna M. Abbacchi, and Robert Fitzgerald at The St. Louis American:
Historically, African-American children have been identified with autism spectrum disorder at a significantly lower rate than Caucasian children, but this gap has narrowed: across all network monitoring sites, autism remains about 7 percent more likely to be identified in Caucasian children than African-American children, and there is no evidence that this disorder is more common in any one race than another.

A serious residual disparity revealed by the CDC’s most recent network report is that African-American children who were identified with an autism spectrum disorder were twice as likely as Caucasian children to be co-diagnosed with an intellectual disability (44 percent compared to 22 percent). In other words, when an African-American child has this common condition, he/she is much more likely to suffer also from intellectual disability.
Researchers at the Washington University School of Medicine have recently been awarded funding by the National Institute of Mental Health (NIMH) to address this disparity, which may be caused by delays in the timing of diagnosis and access to high-quality intervention.

Wednesday, November 28, 2018

More on the National Survey of Children's Health

In The Politics of Autism, I discuss the likelihood that the increase in autism diagnoses and educational determinations at least partially the result of increased awareness and changes in diagnostic criteria

An estimated 1 in 40 American parents report having a child with autism, according to a newly published analysis of the 2016 National Survey of Children’s Health.
The national survey, led by the U.S. Health Resources and Services Administration, involved phone interviews with more than 50,000 parents of children (birth to 17 years old) across the country. Its autism-specific results appear online today in the medical journal Pediatrics.
The survey’s estimate of autism prevalence is significantly higher than the current official estimate of 1 in 59, published by the Centers for Disease Control and Prevention (CDC) earlier this year.
The difference in prevalence rates is likely due to differences in methods, says Autism Speaks Chief Science Officer Thomas Frazier. “One in 40 is closer to what we see with direct prevalence studies where researchers go into a community to directly screen for autism.”
Autism Speaks has funded two such direct-screening studies – one in South Korea and another in South Carolina. The South Korea study found an autism rate of 1 in 38. The results of the South Carolina study are pending.

By contrast, the CDC’s official estimate is based on a review of medical and school records for 8-year-olds at sampling sites across the country. It can miss children with autism who aren’t receiving services. It also reflects differences in record keeping among states.
Persistent obstacles to care
The National Survey of Children’s Health included a broad range of questions regarding access to healthcare and special-education services for children.

It found that, compared to parents of children with other developmental or behavior conditions, the parents of children with autism were:
* 44 percent more likely to report problems obtaining treatment
* 23 percent less likely to report their child having a medical home
* 24 percent less likely to receive help with care coordination.
“Though we’ve seen progress in recent years, this confirms what we know from our parents – that many children face unacceptable delays in getting a diagnostic evaluation, even after parents, teachers or other caregivers have recognized the signs of autism,” Dr. Frazier says.
“Unfortunately access to treatment can be even worse in many communities,” he adds. “Many children, particularly in low-resource areas, are not getting the kind of early intervention services that we know can improve outcomes.”

Tuesday, November 27, 2018

Editorial Boards v. Anti-Vaxxers

 In The Politics of Autism, I look at the discredited notion that vaccines cause autism.

Outbreaks of preventable diseases have given editorial boards an opening to debunk the autism-vaccine notion.

St. Louis Post-Dispatch:
People opt out of vaccinations for various reasons. Some, like President Donald Trump, fear vaccines cause autism (they don't, as now-Health and Human Services Secretary Ben Carson tried to explain to Trump during a 2016 campaign debate). Others worry about various ingredients found in some vaccines, like aluminum (none of these are dangerous). Another group protests on religious grounds.
It's tempting to say government shouldn't force people to get vaccines, and that people deserve the freedom to make their own choices about vaccines. But those who forgo vaccinations aren't just making choices for themselves; they're making choices for the vulnerable populations that rely on herd immunity.
Burlington Times-News:
 As it is with other immunizations, rumors and incorrect information about this and many other vaccines have spread across the country, especially on social media. One of the leading misinformed theories is that the vaccines can cause autism. The initial research was found to be fraudulent and subsequent testing has thoroughly debunked the claim. Yet it has taken on a life of its own, gaining adherents and causing outbreaks of illnesses that had nearly been eliminated.
Asheville Citizen-Times:
Even more disturbing are those who base their opposition to immunization on the quack science that has been making the rounds on the Internet. The most noted example is the claim of a link between the measles-mumps-rubella vaccine and autism.
That claim was made in a 1998 British paper so poorly done that it later was retracted by its publisher. At least 12 follow-up studies have shown no link whatsoever. Nevertheless, a lot of people continue to oppose the MMR vaccine based on the original study.
That is sad, but it shouldn’t be surprising given the growth of anti-science attitudes in our society. The idea of subjecting ideas to rigorous testing is rejected to favor of saying something and assuming it to be true.

Monday, November 26, 2018

One in Forty

In The Politics of Autism, I discuss the likelihood that the increase in autism diagnoses and educational determinations at least partially the result of increased awareness and changes in diagnostic criteria

OBJECTIVES: To estimate the national prevalence of parent-reported autism spectrum disorder (ASD) diagnosis among US children aged 3 to 17 years as well as their treatment and health care experiences using the 2016 National Survey of Children’s Health (NSCH).

METHODS: The 2016 NSCH is a nationally representative survey of 50 212 children focused on the health and well-being of children aged 0 to 17 years. The NSCH collected parent-reported information on whether children ever received an ASD diagnosis by a care provider, current ASD status, health care use, access and challenges, and methods of treatment. We calculated weighted prevalence estimates of ASD, compared health care experiences of children with ASD to other children, and examined factors associated with increased likelihood of medication and behavioral treatment.

RESULTS: Parents of an estimated 1.5 million US children aged 3 to 17 years (2.50%) reported that their child had ever received an ASD diagnosis and currently had the condition. Children with parent-reported ASD diagnosis were more likely to have greater health care needs and difficulties accessing health care than children with other emotional or behavioral disorders (attention-deficit/hyperactivity disorder, anxiety, behavioral or conduct problems, depression, developmental delay, Down syndrome, intellectual disability, learning disability, Tourette syndrome) and children without these conditions. Of children with current ASD, 27% were taking medication for ASD-related symptoms, whereas 64% received behavioral treatments in the last 12 months, with variations by sociodemographic characteristics and co-occurring conditions.

CONCLUSIONS: The estimated prevalence of US children with a parent-reported ASD diagnosis is now 1 in 40, with rates of ASD-specific treatment usage varying by children’s sociodemographic and co-occurring conditions.

At AP, Lindsey Tanner has a very sensible report:
Various reports in recent years have suggested autism rates are rising slightly. Experts think that's mostly because of earlier diagnosis, an expanded definition and more awareness, but say they can't rule out a true increase caused by unknown factors.
How many American children have autism? The U.S. government answers that question at least three different ways and says the latest estimate — 1 in 40 kids — doesn't necessarily mean the numbers are rising.
Here's a rundown on the three surveys:

— The latest estimate is based on responses from about 43,000 parents of kids aged 3 to 17. They were asked if their child had ever been diagnosed with autism spectrum disorder, the formal name that encompasses mild to severe cases. The 2016 survey was internet-based; earlier ones were telephone surveys showing slightly higher rates but the researchers say the results aren't comparable,

The nationally representative survey suggests that about 1.5 million U.S. kids have autism — 2.5 percent or 1 in 40.

The Centers for Disease Control and Prevent collects nationally representative information from in-person interviews. In 2016, it also asked parents of kids aged 3 to 17 about an ever-diagnosis of autism and came up with a rate slightly higher than in previous years but similar to the 1 in 40 estimate.

— The CDC also uses an 11-state tracking system. It's based on health and school records showing which kids meet criteria for autism, focusing on 8-year-olds because most cases are diagnosed by that age. A report from this network released in April, showed that 1 in 59 kids have autism although much higher rates were found in some places. This estimate is considered the most rigorous, but it's not nationally representative.

Sunday, November 25, 2018

What Criminal Justice Students Know of Autism

In The Politics of Autism, I write:
People with disabilities are victims of violent crime three times as often as people without disabilities. The Bureau of Justice Statistics does not report separately on autistic victims, but it does note that the victimization rate is especially high among those whose disabilities are cognitive. A small-sample study of Americans and Canadians found that adults with autism face a greater risk of sexual victimization than their peers. Autistic respondents were more than twice as likely to say that had been the victim of rape and over three times as likely to report unwanted sexual contact.

At The Journal of Police and Criminal Psychology, Melanie Clark Mogavero has an article titled "What Do Criminal Justice Students Know About Autism? An Exploratory Study Among Future Professionals."  The abstract:
The social and communication impairments and other atypical behaviors among those with autism spectrum disorder (ASD) make this subset of the population particularly vulnerable. These vulnerabilities also present a separate set of concerns when they have contact with the criminal justice system, typically as victims or witness of abuse, as offenders or suspicious persons, or lost or missing persons. Specific measures must be taken to improve communication and to avoid misinterpreting communication impairments and other atypical behaviors as an indication of a lack of cooperation, being under the influence of substances, or of guilt/lack of remorse. Without the benefit of having basic knowledge and understanding of autism, criminal justice system professionals will struggle with meeting the needs of those with ASD. The current study explored the level of autism knowledge and awareness of among a sample of 400 undergraduate criminal justice students and possible future criminal justice professionals. The results demonstrated that the sample of students had moderate knowledge of ASD, which did not appear to increase with time in program. Those with greater exposure to people with ASD had more knowledge and understanding than those who did not. Recommendations and implications are discussed.
From the article:
Due to behavioral characteristics such as social isolation, social issues, poor communication skills, and other atypical behaviors, those with ASD are at greater risk of physical and sexual abuse (Carlile 2018; Duan et al. 2015; Edelson 2010; Hall-Lande et al. 2015; Mandell et al. 2005; Perkins and Wolkind 1991). For example, Mandell et al. (2005) reported that of the 156 children with ASD, 14% were victims of physical abuse, 12% sexual abuse, and more than 4% had been both victims of both physical and sexual abuse. An unpublished 2007 report by The Autism Society revealed that among a survey of 1500 individuals with ASD and their caregivers, 17% reported physical abuse or assault, 13% reported being the victim of sexual abuse, 8% reported a sexual assault, and 8% reported neglect (Autism Society 2006). Hall-Lande et al. (2015) noted that children with ASD and other disabilities were overrepresented in the state child protection system than children without disabilities. Further, Duan et al. (2015) noted that the severity of abuse not only increased with age, but also the severity of one’s ASD symptomology.
Unfortunately, many abuse cases go unreported and police follow-up, prosecution, and convictions of the perpetrators are low, often due to a lack of specialized police training in handling victims with developmental disabilities, and many individuals with disabilities are overwhelmed by the CJS (Gammicchia and Johnson n.d.). Victim credibility as a witness is often challenged due to concerns with memory, suggestibility, and communication (Bruck et al. 2007; Henry et al. 2017; Lindblad and Lainpelto 2011; Maras and Bowler 2010; Maras et al. 2014; Mattison et al. 2015, 2016; McCrory et al. 2007). Some parents reported that police appeared to be impatient and lacked empathy when their child had difficulty remembering events, dates, and times, which sometimes led to their child becoming too distressed to continue the interview (Edworthy and Hylton 2010).
Surveys of police officers reported that obtaining written statements or conducting interviews with individuals with ASD was difficult (Crane et al. 2016). Therefore, when police must communicate with someone with ASD, certain provisions must be implemented, beginning with the initial contact, questioning (to ensure accurate accounts of crimes are obtained), and having appropriate representation so their rights preserved. Communication provisions include adequately preparing the victim of the legal process, being aware of any communication or reading difficulties, using assistive technology when necessary, eliminating/reducing noise or other visual stimuli that could be distracting, and also limiting the number of interviews or reducing the length of interviews (Edworthy and Hylton 2010; Henry et al. 2017; Gammicchia and Johnson n.d.).

Saturday, November 24, 2018

Young Crusader Against Seclusion

In The Politics of Autismdiscuss the use of restraint and seclusion.  Many posts have mentioned these techniques, both in schools and facilities for people with disabilities.

At NBC News, Hannah Rappleye and Liz Brown report on Alex Campbell, an autistic student from Virginia whose school often put him in a seclusion room without telling his parents.
According to the latest data collected by the U.S. Department of Education, public school districts reported restraining or secludingover 120,000 students during the 2015-2016 school year, most of them children with disabilities. Families and advocates have documented cases of students being pinned down, strapped to their wheelchairs, handcuffed or restrained in other ways. Both practices, experts say, can traumatize children, and may lead to severe injuries, even death.
Alex is determined to close the seclusion rooms for good. Last week, the 13-year-old told his story to legislators, congressional staff and advocates to mark the introduction of the Keeping All Students Safe Act, a bill that would bar the use of seclusion and significantly curtail the use of restraints in schools that receive federal funds. No federal law currently regulates the use of such practices on students.
While a landmark piece of federal legislation called the Individuals With Disabilities Education Act, or IDEA, mandates that all students with disabilities are provided with a free public education tailored to meet their needs, regulations governing the use of restraint and seclusion in schools vary from state to state. Many states don't require school administrators to notify parents when their child is restrained or secluded. According to a recent analysis published by the Autism National Committee, only 28 states provide "meaningful protections against restraint and seclusion" for children, including those with disabilities.
From ASAN:
ASAN applauds Congress for the introduction of the Keeping All Students Safe Act (KASSA). If passed, the Keeping All Students Safe Act would be the first federal law to limit the use of restraints and seclusion on children with disabilities. ASAN strongly supports the swift passage of this crucial legislation.
Restraint and seclusion have a long history of overuse, especially on students with disabilities and students of color. Being restrained or secluded is a traumatic, sometimes life-threatening experience. And using restraint and seclusion doesn’t translate into better outcomes for students. In fact, research found that by abandoning restraint and seclusion, students are safer and more likely to achieve their goals. Schools are meant to support students and help them learn and grow – that isn’t possible in an environment where restraint and seclusion are used.
We recognize there is still a lot of work to be done to ensure disabled students are safe at school, and to close school to prison pipeline. While KASSA would require data collection on restraint and seclusion, the data would not show key demographic information of students who are restrained or secluded, such as the type of disability they have, or if they were both a disabled student and a student of color. Understanding which kinds of students are disproportionately restrained or secluded is an important tool for advocates, and we encourage Congress to refine the data collection guidelines within this bill to include these parameters. In addition, we urge Congress to offer more protections for students who are restrained by school resource officers (SROs), as well as close a loophole within KASSA that might inadvertently allow certain kinds of restraints.
Restraint and seclusion are horrifying practices that violate the rights of disabled students. Disabled students deserve better than restraint and seclusion, and KASSA is an important step forward that our community wants and needs. We urge Congress to pass this long-overdue bill as soon as possible, and look forward to working with them to make that happen.

Friday, November 23, 2018

Good News: Court Upholds California Vax Law Bad News: Chickenpox and Measles

Helen Christophi at Courthouse News:
Dealing a blow to vaccine opponents, a California appellate court upheld a 2016 state law repealing the personal belief exemption to California’s immunization requirements for schoolchildren.
Four California parents and a California anti-vaccine group called A Voice for Choice, Inc. sued the state’s education department over the statute last year, claiming it violated their rights to due process, privacy, a public education and free exercise of religion under the California Constitution.
But in an unpublished opinion issued Tuesday, the Sacramento-based appellate court rejected each of their claims as unsupported by case law.
Plaintiffs’ arguments are strong on hyperbole and scant on authority,” Associate Justice Ronald Robie wrote for the court’s three-judge panel, adding, “Plaintiffs’ failure to cite or even acknowledge the seminal cases (Abeel or Zucht) directly on point and counter to their argument in their opening brief violates counsel’s duty to the court.”
A release from Buncombe County, NC:
The varicella (chickenpox) outbreak at Asheville Waldorf School has grown to 36 students. Health officials continue to monitor the situation and strongly encourage everyone in the community to do their part to reduce the spread of this outbreak.

The best way to prevent becoming infected with chickenpox is to be fully immunized.

Chickenpox is easily passed from one person to another through the air by coughing or sneezing or through the fluid from a blister of a person who has chickenpox. Although it is usually not a serious illness, it often causes children and their parents to miss days at school and work. Most cases of chickenpox in healthy children are treated with bed rest, fluids, and fever control.
Deena Yellin at The North Jersey Record reports on a measles outbreak in the NY/NJ area:
The measles outbreak has continued to spread, with additional cases reported throughout New York and New Jersey. The majority of people infected with measles were not vaccinated, health officials said.

The largest outbreak is in Rockland County, which had 75 confirmed cases and 11 suspected cases as of Monday morning, the Rockland County Department of Health said.
New Jersey has 14 confirmed cases, with most of them in Lakewood in Ocean County, the New Jersey Department of Health reported.

And Brooklyn, New York, has 24 confirmed cases, the New York City Department of Health said.

Medical experts have called this the largest outbreak of the disease in decades, with measles reported in 26 states, including California, Florida, Nevada and Texas.

The illness has also been responsible for 33 deaths in EU countries in 2018, according to the European Center for Disease Prevention and Control.
The recent outbreaks in New Jersey, Brooklyn and Rockland County are linked to people who traveled to Israel and returned with the infection. In Rockland County, the cases have spread beyond the Orthodox community, where they originated. Health officials say a mix of adults, teens and children have been affected.