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Tuesday, January 22, 2019

Death by Suicide

In The Politics of Autism, I write:
Many analyses of autism speak as if it were only a childhood ailment and assume that parents are the main stakeholders. But most children with autism grow up to be adults with autism, and they suffer uniquely high levels of social isolation. Almost 40 percent of youth with an autism spectrum disorder never get together with friends, and 50 percent of never receive phone calls from friends. These figures are higher than for peers with intellectual disability, emotional disturbance, or learning disability. When school ends, many adults with autism have grim prospects. Though evidence is sparse, it seems that most do not find full-time jobs. Compared with other people their age, they have higher rates of depression, anxiety, bipolar disorder, and suicide attempts.
Scientific Summary
Growing concern about suicide risk among individuals with autism spectrum disorder (ASD) necessitates population‐based research to determine rates in representative samples and to inform appropriate prevention efforts. This study used existing surveillance data in Utah to determine incidence of suicide among individuals with ASD over a 20‐year period, and to characterize those who died. Between 1998 and 2017, 49 individuals with ASD died by suicide. Suicide cumulative incidence rates did not significantly differ between 1998 and 2012 across the ASD and non‐ASD populations. Between 2013 and 2017, the cumulative incidence of suicide in the ASD population was 0.17%, which was significantly higher than in the non‐ASD population (0.11%; P < 0.05). During this period, this difference was driven by suicide among females with ASD; suicide risk in females with ASD was over three times higher than in females without ASD (relative risk (RR): 3.42; P < 0.01). Among the individuals with ASD who died by suicide, average age at death and manner of death did not differ significantly between males and females. Ages at death by suicide ranged from 14 to 70 years (M[SD] = 32.41[15.98]). Individuals with ASD were significantly less likely to use firearms as a method of suicide (adjusted odds ratio: 0.33; P < 0.001). Study results expand understanding of suicide risk in ASD and point to the need for additional population‐based research into suicide attempts and ideation, as well as exploration of additional risk factors. Findings also suggest a need for further study of female suicide risk in ASD. Autism Research 2019. © 2019 The Authors. Autism Research published by International Society for Autism Research published by Wiley Periodicals, Inc.

Lay Summary
This study examined suicide risk among individuals with autism spectrum disorder (ASD) in Utah over a 20‐year period. Risk of suicide death in individuals with ASD was found to have increased over time and to be greater than in individuals without ASD between 2013 and 2017. Females with ASD were over three times as likely to die from suicide as females without ASD. Young people with ASD were at over twice the risk of suicide than young people without ASD. Individuals with ASD were less likely than others to die from firearm‐related suicides.
From the article:
Unemployment is common among individuals with ASD, and has been posited to relate to high rates of suicidal behavior [e.g., Pelton & Cassidy, 2017]. Thus, it is notable that approximately half (49%) of the individuals with ASD who completed suicide in our sample were listed on their death certificate to either have an occupation or be a student (an additional 40% had no data). These results may imply that individuals with ASD who are employed or enrolled in school are not necessarily at lower risk for suicide. Employment is an important priority for adults with ASD, but based on our findings, we note that placement in a job should not be viewed as de facto suicide prevention. Future studies should further examine employment status with more complete data, as well as other key factors such as job satisfaction, overall quality of life, and mental health.

Monday, January 21, 2019

The Shutdown Hurts People with Disabilities

According to a 2016 report by the Official of Personnel Management (OPM) there are over 173,000 federal employees with disabilities across all different categories of disabilities. When you include veterans with service-connected disabilities, that number rises to over a quarter million employees. That means federal employees with disabilities represent 14.41 percent of the overall workforce while fully 19 percent of veterans with service-connected disabilities work for the federal government.
There are over 14,000 employees with disabilities at the Department of Homeland Security, around 8,000 at DOJ and a similar number at Agriculture. The Department of Transportation employs over 5,000 workers with disabilities while Commerce is also home to around 2,700 workers with disabilities. To varying degrees, all of them are being hurt by the continuing government shutdown.

In addition to federal employees being furloughed, hundreds of thousands of contractors with disabilities are also impacted. For contractors, even when the government reopens, they will probably not receive any back pay whatsoever. Among those contractors are over 2,000 employees with disabilities working in the AbilityOne Program with significant disabilities directly impacted by the partial shutdown.

Sunday, January 20, 2019

"Vaccines are not toxic, and they do not cause autism."

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism.   This bogus idea can hurt people by allowing disease to spread.

From an editorial in the New York Times:
Be savvy. The Vaccine Confidence Project is a London-based academic endeavor that monitors anti-vaccine websites for rumors and conspiracies and addresses them before the messages go viral. It also conducts regular surveys of attitudes and puts out a vaccine confidence index. Federal health officials would do well to implement a similar program, make it as public as possible and pair it with an aggressive and targeted social media campaign that makes as much use of celebrities as the anti-vaccine movement has.
Be clear. Vaccines, to some extent, are victims of their own success. In the United States especially, they’ve beaten so many infectious foes into oblivion that hardly any practicing doctors, let alone new parents, remember how terrible those diseases once were. An effective pro-vaccine campaign needs to remind us: Vaccines prevent two million to three million deaths globally each year. In developing countries, people line up for hours to get these shots. It’s also O.K. to get out of the gray zone. Scientists, especially, are uncomfortable with black-and-white statements, because science is all about nuance. But, in the case of vaccines, there are some hard truths that deserve to be trumpeted. Vaccines are not toxic, and they do not cause autism. Full stop.

Saturday, January 19, 2019

Initiative to Address the Inappropriate Use of Restraint and 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.

A Thursday release from the US Department of Education:
U.S. Secretary of Education Betsy DeVos announced today that the U.S. Department of Education will launch an initiative to address the possible inappropriate use of restraint and seclusion in our nation’s schools. The Office for Civil Rights (OCR), in partnership with the Office of Special Education and Rehabilitative Services (OSERS), will oversee this proactive approach which will protect students with disabilities by providing technical assistance and support to schools, districts, and state education agencies, and strengthen enforcement activities.
“This initiative will not only allow us to support children with disabilities, but will also provide technical assistance to help meet the professional learning needs of those within the system serving students,” Secretary DeVos said. “The only way to ensure the success of all children with disabilities is to meet the needs of each child with a disability. This initiative furthers that important mission.”
The Department’s Initiative to Address the Inappropriate Use of Restraint and Seclusion will not only include components that help schools and districts understand how federal law applies to the use of restraint and seclusion, but the Department will also support schools seeking resources and information on the appropriate use of interventions and supports to address the behavioral needs of students with disabilities.
The Department’s initiative will include the following three components:
Compliance Reviews
  • OCR’s 12 regional offices will conduct compliance reviews on recipients’ use of restraint and seclusion on children with disabilities.
  • Compliance reviews will focus on the possible inappropriate use of restraint and seclusion, and the effect of such practices on the school’s obligation to provide a free appropriate public education (FAPE) for all children with disabilities.
  • OCR will conduct compliance reviews and work with public schools to correct noncompliance.
CRDC Data Collection
  • OCR will conduct data quality reviews and work directly with school districts to review and improve restraint and seclusion data submitted as a part of the Civil Rights Data Collection (CRDC).
  • OCR will provide technical assistance to schools on data quality, to ensure that they are collecting and reporting accurate data relating to the use of restraint and seclusion.
Support for Recipients
  • OCR will provide technical assistance to public schools on the legal requirements of Section 504 of the Rehabilitation Act relating to the use of restraint and seclusion on children with disabilities.
  • OCR will partner with OSERS to provide joint technical assistance to support recipients in understanding how Section 504, Title II, and the Individuals with Disabilities Education Act (IDEA) informs the development and implementation of policies governing the use of restraint and seclusion.
  • OSERS will support recipients identified by OCR through compliance reviews or through the complaint resolution process to ensure they have access to appropriate technical assistance and support.
  • OSERS will support schools to ensure they have access to technical assistance and available resources as they establish or enhance environments where the implementation of interventions and supports reduces the need for reliance on less effective and potentially dangerous practices.
  • OSERS will consider how current investments may be utilized to provide support and training to schools, districts, and states.
  • OSERS and OCR will jointly plan and conduct webinars for interested parties related to the use of appropriate interventions and supports for all students.
“In collaboration with OSERS, we will work to ensure that recipients are aware of their legal obligation under Section 504 and Title II, and that we have accurate information and data on the use of restraint and seclusion,” said Assistant Secretary for Civil Rights Kenneth L. Marcus. “Working directly with schools and districts provides an excellent opportunity to help recipients and support their efforts toward compliance to ensure that all children have an opportunity to succeed in the classroom.”
“OSERS has long focused on improving results and outcomes for children with disabilities,” said Assistant Secretary for Special Education and Rehabilitative Services Johnny W. Collett. “Rethinking special education and challenging the status quo includes examining systems that keep us from making the kind of improvement we know is necessary. This initiative furthers our ongoing efforts to examine any practice that limits opportunities for children with disabilities.”

Friday, January 18, 2019

Cannot Repeat It Enough: Vaccines Do Not Cause Autism

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism.   This bogus idea can hurt people by allowing disease to spread.

Dr. Peter Hotez at The Hill:
There is no link between vaccines and autism. I trace the modern anti-vaccine movement alleging vaccine-autism links back to 1998 when a paper was published in The Lancet, a prestigious medical journal, claiming that the live measles-mumps-rubella (MMR) vaccine (especially the measles component) might lead to pervasive developmental disorder, a term then used to refer to autism.
That paper was subsequently retracted by the journal editors and shown to be fundamentally flawed and scientifically invalid. In addition, several large population-based studies showed that children who received the MMR vaccine were no more likely to get autism than children who were not vaccinated, while further studies found that autistic children were no more likely to have received the MMR vaccine than children not on the autism spectrum.

However, claims of autism and vaccines then shifted from the MMR vaccine, when it was alleged thimerosal preservative that used to be found in many childhood vaccines (but which now has been mostly removed) caused autism. Again, population-based studies showed no links between autism and thimerosal-containing vaccines and indeed after thimerosal vaccines were removed from markets in the United States, Denmark and elsewhere, autism rates did not decline.
From there, the assertions moved to the concerns that somehow spacing vaccines too close together was the issue, but that too does not hold up, and lately there are new rounds of allegations claiming that aluminum-based adjuvants found in some childhood vaccines cause autism, which is also not true.
The point being that this is the modus operandi of the anti-vaccine movement — a strange type of vaccine “whack-a-mole” — forever looking for new vaccine links only to have them disproven time and time again.

The World Health Organization has named vaccine hesitancy as one of the top 10 health threats of 2019.  Kate Wheeling at Pacific Standard:
One of the biggest reasons that more and more parents are choosing not to vaccinate their children could be a lack of trust in physicians, according to Dennis Rosen, a pediatric specialist:
The ongoing erosion of trust in the medical establishment as a whole is also to blame, as frequent reports of dubious financial relationships between physicians, professional medical societies, and the pharmaceutical industry leave many questioning whether or not physicians can be trusted.
Unsure of what to do and whom to listen to, many seek answers to their questions elsewhere, or simply rely on their gut feeling, without speaking to those one would presume to be the most qualified to provide science-based guidance specifically tailored to the patient's own values and cultural sensitivities.
That's why the WHO is dedicated to supporting health workers on the ground all over the world as it confronts this and other top health threats of 2019. "Health workers, especially those in communities, remain the most trusted advisor and influencer of vaccination decisions," the organization writes, "and they must be supported to provide trusted, credible information on vaccines."

Thursday, January 17, 2019

National Council on Severe Autism

The Politics of Autism includes a discussion of major interest groups such as Autism Speaks and ASAN.  The groups have different and often conflicting priorities.

A release from the National Council on Severe Autism:
Against a backdrop of increasing challenges for individuals with autism and their families nationwide, leading advocates have announced the formation of the National Council on Severe Autism (NCSA). The new organization is created to address pragmatically the many serious challenges in services, housing, and policy facing families, caregivers and individuals affected by severe forms of autism and related disorders.

“Autism is often romanticized and sugar-coated in the media and social media,” said Jill Escher, NCSA President. “In contrast, our efforts will be guided by pragmatic realities. For countless families devoted to the well being of their disabled loved ones, the daily challenges can be overwhelming, and the prospects for the future extremely bleak. We will work to increase capacity and a range of new options for this population.”
The NCSA addresses forms of autism that, by virtue of any combination of cognitive and functional impairments, necessitate continuous or near-continuous supervision, services and supports over the lifespan. Individuals in this category are often nonverbal or have limited use of language, are intellectually disabled, and, in a subset, exhibit challenging behaviors that interfere with safety and well-being. Data from the U.S. Centers for Disease Control, along with other population studies, suggest that nearly 1% percent of children and adolescents in the United States likely have a form of autism meeting these criteria.
“The growth of the severely disabled autistic population—nearly 1% of all children in the U.S., together with a burgeoning population of young adults—requires clear-headed, matter-of-fact policy solutions that deliver results," said Amy Lutz, NCSA Secretary. "We look to work cooperatively with federal and state agencies to create cost-effective ways of finding quality places to live and well trained and dedicated people to help care for disabled relatives and neighbors. They deserve it, and wishful thinking about autism won't solve the problem."
"The establishment of the NCSA will be an invaluable contribution to the autism community, both in the U.S. and beyond," said Lee Wachtel, MD, Medical Director, Neurobehavioral Unit, of the Kennedy Krieger Institute in Baltimore, and who is not associated with the new organization. "It will provide a sensible and long-awaited voice for those living with highly challenging conditions with overwhelming impact upon individuals, carers, and the larger community."
Prominent practitioners, professionals, and policy experts noted for successful real-world autism advocacy comprise the initial board of the NCSA. The group includes President Jill Escher, President of Autism Society San Francisco Bay Area and founder of Escher Fund for Autism (California), Vice President Feda Almaliti, who helped spearhead insurance reform in her state (California), Secretary Amy Lutz, founder of the EASI Foundation (Pennsylvania), Treasurer Alison Singer, founder and Executive Director of the Autism Science Foundation (New York), and board members Frank Campagna, a television producer and popular blogger (New York), Lisa McCauley Parles, Esq., a partner in Parles Rekem, LLP a law firm representing individuals with disabilities and their families (New Jersey), Dr. Gloria Satriale, executive director of Preparing Adolescents and Adults for Life (Pennsylvania), Dr. Matthew Siegel, Associate Professor of Psychiatry and Pediatrics of Tufts University School of Medicine, Vice President of Medical Affairs, Developmental Service, of Maine Behavioral Healthcare, and Faculty Scientist II at Maine Medical Center Research Institute (Maine), and Judith Ursitti, Director of State Government Affairs for Autism Speaks (Massachusetts).

The NCSA has published an initial set of Position Statements on important topics facing the autism community. These include: Guardianship, Vocational Options, Personal Safety and Abuse Prevention, Access to Appropriate Health Care and Crisis Care, Medicaid HCBS Residential Policies, Educational Placements, Need for Innovative Research.
The NCSA homepage features a sign-up block for its newsletters and updates. NCSA will also host accounts on social media, starting with Facebook and Twitter. The organization is planning to host a think tank on national adult autism policy as one of its initial efforts. "We have no intention to duplicate the vitally important work of other autism advocacy organizations," added Escher. "We aim only to add a strong voice for those who cannot speak for themselves."
NCSA has filed for Internal Revenue Code 501(c)(3) nonprofit status and will announce on its website if and when approval is received.
For more information:
Website: ncsautism.orgEmail: info@ncsautism.orgFacebook: @ncsautismorg


National Council on Severe Autism
PO Box 26853
San Jose, CA 95159-6853

Wednesday, January 16, 2019

Lifting the Virginia Age Cap

The Politics of Autism includes an extensive discussion of insurance.

A release from Virginia Delegate Robert Thomas:
Delegate Bob Thomas on Tuesday announced House Bill 2577, legislation to lift the age cap for autism coverage to help approximately 10,000 Virginians get access to needed healthcare. At a press conference, Delegate Thomas was joined by Speaker Kirk Cox and House Appropriations Chairman Chris Jones to discuss the legislation.
“This announcement has been a long time coming in Virginia,” said Speaker Kirk Cox (R-Colonial Heights). “The CDC now estimates that Autism impacts 1 in 59 children in our country, a number that is growing at 15% per year. I am proud of the work done by Delegate Bob Thomas and Appropriations Chairman Chris Jones to get us to where we are today.”
Currently, state law only says that health insurers must offer such coverage for individuals from age 2 through age 10. According to a January, 2013 report from Virginia Commonwealth University’s Autism Center of Excellence, the average age of diagnosis in Virginia is between six and seven years of age. This means for many diagnosed, they could only have three years of covered treatment before coverage could be limited.
“As a father of eight I know just how important ensuring children have access to quality healthcare is,” said Delegate Bob Thomas (R-Stafford). “Children did not choose to be born with Autism. We should do everything we can to continue to learn about the causes– but also provide treatment for those diagnosed regardless of age.”
No other prevalent health condition including– asthma, diabetes and cancer– has coverage limits imposed based on the age of the patient. Coverage for all other health conditions is based on medical necessity. The Department of Human Resource Management reports for State Health insurance plans this proposal will have an estimated fiscal impact of $237,00 – $118,500 is the state cost from our General Fund budget
“Watching every dollar the Commonwealth spends is one of my responsibilities that I take very seriously,” said House Appropriations Chairman Chris Jones (R – Suffolk). “But, compared to the services that will now be available to the Autism community and to the families who care for an autistic loved one – the cost is worth it.”

Tuesday, January 15, 2019

Autism, Vaccines, Measles, and the Ultra-Orthodox

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

At The Forward, Ari Feldman explains why there is a measles outbreak in New York's Hasidic community.
[S]ome ultra-Orthodox believe that there is a connection between vaccines and autism, despite the fact that the CDC says there is none. Major Orthodox rabbis have called vaccines “hoaxes” and cast doubt on their efficacy, including three who sit on the rabinnical board that guides Agudath Israel of America, the leading Haredi umbrella group.
Vaccine skepticism has spread from those leaders to their followers.
“I’ve been practicing medicine and doing research on this topic for years now and I am saying scientifically the truth is known but being covered up,” Yosef, a physician assistant from Crown Heights who was raised in the Chabad movement, a branch of Hasidic Judaism, wrote in an email.
Yosef, 35, said that although he and two of his five children are vaccinated, he believes vaccines cause more harm than good.
“Side effects include death, autoimmune diseases, autism and many things in between,” he wrote. “I don’t think, I know. CDC knows. $4 billion paid to parents by our government since 1986 knows.”

Monday, January 14, 2019

The Case for Inclusion and the Future of Services

The huge baby boom generation is now entering old age, so the number of Alzheimer’s patients will soar.  Competition for suitable workers could drive up the costs of care.   And those costs will rise just as overall government budgets are getting tighter.  The aging of baby boom generation will mean fewer workers paying taxes and more seniors drawing benefits, simultaneously squeezing revenues and expenditures at all levels of government.   “People assume the state will be there to help with their child,” financial planner John Nadworny says, “but that’s a really risky bet.”   
Published regularly, the Case for Inclusion assesses all 50 states and the District of Columbia on 30 measures that paint a picture on how well state programs serve individuals with intellectual and developmental disabilities (I/DD). These 30 measures are broken down into five key issue areas: Promoting Independence, Promoting Productivity, Keeping Families Together, Serving Those in Need and Tracking Health, Safety & Quality of Life.
Nationally, the Case for Inclusion 2019 finds:
  • Nearly 424,000 individuals with I/DD—75,000 more than in the previous Case for Inclusion report—were on states’ waiting lists to receive Medicaid-funded Home and Community-Based Services.
  • Only fourteen states and the District of Columbia had closed all large, state-operated institutions that warehouse individuals with I/DD.
  • For the first time this year, the Case for Inclusion incorporates states’ participation in the National Core Indicators (NCI) staff survey into the scoring process that determines’ state rankings. Participation in this survey is critical as it helps shed light on what we know to be a significant workforce crisis among Direct Support Professionals, the frontline staff who make community integration possible. Twenty-four states had participated in the most recent NCI staff survey.
  • Thirty-three states, one more than in 2016, meet what’s known as the 80/80 Home and Community Standard, meaning that 80% of all individuals with I/DD are served in the community and 80% of all resources support their ability to be part of the community and live in homes with fewer than seven residents.
  • Just 16 states, up from 15 in 2016, support a large share of families (at least 200 families per 100,000 state residents) through support services that empower individuals with I/DD to remain living in their family home.
  • Only 15 states, unchanged from the 2016 report, successfully placed at least 60% of individuals in vocational rehabilitation jobs.
  • Just 15 states, also unchanged from 2016, report that at least 10% of residents with I/DD use self-directed services, which allow them to design the supports they receive based on their specific needs.
For the complete Case for Inclusion 2019 findings, download the report.
From the report:
Demographic trends increasing demand include the increase in Autism diagnoses,  increased longevity of people with I/DD, aging family caregivers needing more assistance to care for their loved ones with I/DD, and demand from baby boomers. Simultaneously,  fewer women are being born into the labor pool – and the DSP [Direct Support Professional] workforce is predominantly female. This promises unmet demand for support unless we take action soon.

Sunday, January 13, 2019

How Tennessee Officials Responded to a Politician Spreading Vaccine Misinformation

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

Kimberlee Kruesi at Associated Press reports on how Tennessee's Department of Health responded to Mark Green, who had just won a US House seat and was spreading the bogus idea.  AP made a public records request and got emails.
Chief Medical Officer David Reagan shared a link to a story about the space agency extending an invite to Stephen Curry after the Golden State Warriors star denied humans had visited the moon. Curry quickly accepted the gesture and took back his comments, saying that he was joking, and believes the moon landing was no hoax.
"With regards to the statements by representative elect analogy from NASA," Regan wrote the morning of Dec. 13, attaching a link to NASA's invite.
"I like it," responded Tennessee Health Commissioner John Dreyzehner.
Dreyzehner then asked if Reagan was suggesting the department invite anyone to have their questions about vaccines answered by the chief medical officer.
"Yes, although I was specifically inviting Rep-elect Green," Reagan responded. "The discussion would likely be informative and helpful, and we may gain a friend."
Hours later, officials issued a blunt statement: "Vaccines do not cause autism. Vaccines save lives," along with an invitation, urging anyone with questions to contact the department. The brief statement didn't mention Green by name.

Saturday, January 12, 2019


A release from Dartmouth:
Why is it so challenging to increase the number of people who get vaccinated? How does popular resistance to vaccination remain strong even as preventable diseases make a comeback?
A new study from Dartmouth College shows that past problems with vaccines can cause a phenomenon known as hysteresis, creating a negative history that stiffens public resolve against vaccination. The finding explains why it is so hard to increase uptake even when overwhelming evidence indicates that vaccines are safe and beneficial.
A hysteresis loop causes the impact of a force to be observed even after the force itself has been eliminated. It's why unemployment rates can sometimes remain high in a recovering economy. It's why physical objects resist returning to their original state after being acted on by an outside force. And, according to the Dartmouth research, it's why the public resists vaccination campaigns for ailments like the common flu.
"Given all the benefits of vaccination, it's been a struggle to understand why vaccination rates can remain stubbornly low," said Feng Fu, an assistant professor of mathematics at Dartmouth College. "History matters, and we now know that hysteresis is part of the answer."
The research, published in the journal Proceedings of the Royal Society B, is the first study to demonstrate that hysteresis can impact public health.
From the article, "Imperfect vaccine and Hysteresis" by Xingru Chen  and Feng Fu:
Notably, in the aftermath of a sharp decline in vaccination coverage triggered by concerns regarding vaccine safety and efficacy, the recovery of vaccination rate from nadir to levels needed to attain herd immunity has been remarkably slow [39,40,5559]. For example, it took almost 15 years for the recovery in the uptake of whole-cell pertussis vaccine from rock bottom 30% in 1978 to 91% in 1992 in England and Wales [55]. More recently, even though resurgent measles outbreaks impose huge risks for those unvaccinated, and even in some regions like France it has become an endemic disease [57,58], the coverage of measles vaccination has only gradually climbed up, but still remains insufficient, more than a decade after the infamous MMR vaccination and autism controversy [40,59]. It seems that the recovery of vaccination rate depends not just on the extent of mitigating perceived cost of vaccination and improving vaccine efficacy, but also on the past vaccination trajectory, hence possibly marring a rapid increase.

Friday, January 11, 2019

Update on Guiding Hands

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.  The student's death led to protests.

Sawsan Morrar at the Sacramento Bee:
Local school districts are removing students from a private El Dorado Hills school that provides services for special-needs students after the state rescinded the facility’s certification Wednesday.
State regulators confirmed Thursday they have decertified Guiding Hands School, which contracts with multiple local school districts to provide educational services for kids with autism and other developmental issues.
In November, a 13-year-old student with autism, Max Benson, became unresponsive and later died after being held in a face-down restraint by staff at Guiding Hands. The incident sparked an investigation by the El Dorado County Sheriff’s Department, as well as the California Department of Education.
It was not immediately clear if the decertification is a result of the investigation into Benson’s death, or if the school will close. The CDE does not have the authority to close a non-public school; it can only suspend or revoke certification, according to a statement to The Bee. But local school districts can only send students to schools that are certified.

Thursday, January 10, 2019

Measles in New York

Jacqueline Howard at CNN:
A measles outbreak in New York has been called the largest in the state's recent history, and it's occurring at a time when there have been spikes in measles cases globally.
Since the outbreak emerged in September, measles has been diagnosed in at least 112 people across Rockland and Orange counties and at least 55 in New York City, according to numbers provided by the New York state and city health departments on Tuesday.

"I would say this is the largest measles outbreak that New York state has had in recent history," said Dr. Howard Zucker, the state commissioner of health.
"If you go back many decades ago when we weren't vaccinating, of course there were probably more outbreaks, but in my memory, I don't know of a measles outbreak that was this significant," he said. "We have immunized 13,000 children since this outbreak has begun."

The outbreak, which emerged after some children were infected on a visit to Israel in September, has particularly affected Orthodox Jewish communities, according to the New York City Health Department.
In New York City alone as of Tuesday, "we have 55 cases confirmed in Brooklyn," said Dr. Jane Zucker, assistant commissioner for the Bureau of Immunization at the NYC Health Department. She is of no relation to Dr. Howard Zucker

Wednesday, January 9, 2019

Another Dragging in Kentucky

In The Politics of Autismdiscuss the use of restraint and seclusion, along with cases of abuse.

Previous posts discussed dragging incidents in Kentucky.  Here is another.

Lindsey Bever at the Washington Post:
A special-education teacher emerged from a classroom, dragging a student with autism through the hallwaysof an elementary school in Kentucky.
After a moment, the teacher, whom authorities later identified as Trina Abrams, stopped and asked the 9-year-old boy, “You want to walk?”
“No,” he said.
“Okay,” she responded, then the boy let out a moan as she continued to pull him by his wrists, dragging his limp body across the floor.
The child’s mother, Angel Nelson, told ABC affiliate WCHS she was “horrified” when she learned that her son, who has autism among other special needs, was allegedly dragged by a teacher through his school. Nelson said she posted surveillance footage of the October incident on Facebook last weekend because she wanted him “to have a voice.” The video has since been viewed hundreds of thousands of times, prompting widespread outrage and calls for change.

Tuesday, January 8, 2019

Private Placement in New York City

Alex Zimmerman at Chalkbeat:
Shortly after Mayor Bill de Blasio took office in 2014, he made it easier for students with disabilities to attend private schools with the city picking up the tab.

That policy change is quietly having an enormous impact: The cost of sending students with disabilities to private schools has doubled since de Blasio was sworn in and has reached $325 million per year, dwarfing the price tag of some of the mayor’s highest-profile education initiatives.
The expense eclipses the mayor’s Renewal program to turn around struggling schools ($192 million per year); a recent increase in the funding formula that governs city school budgets ($125 million); and even the often-debated Absent Teacher Reserve for educators without permanent placements ($136 million in 2018).
The sharp increase is notable because it suggests the city is increasingly acknowledging that it can’t provide an adequate education to students with disabilities within traditional public schools. And the trend is at odds with schools Chancellor Richard Carranza’s desire to send fewer students with disabilities to schools outside the system.
“It’s telling that the city doesn’t have the programming needed to educate a lot of kids,” said Lori Podvesker, a policy manager at INCLUDEnyc, a support agency for young people with disabilities.
Officials said 4,431 students with disabilities attended private schools paid for by the education department in fiscal year 2017, according to the most recent data obtained by Chalkbeat, a third more than in 2014. Overall, there are roughly 225,000 students with disabilities in city schools.

Monday, January 7, 2019


Most of HUD’s routine enforcement activities have been suspended, including mandatory health and safety inspections of housing for low-income families, the elderly and people with disabilities, according to the shutdown contingency plan that HUD posted on its website. Public housing officials say they don’t know how long rental assistance payments will keep coming from the government, and a suspension could put millions of tenants at risk if the shutdown drags on into February. And if there are any problems in providing affordable housing grants to local and state governments, as well as nonprofit groups, there are few people on hand to resolve them, according to one furloughed staffer.
Matt Shuham at TPM:
According to the Post, the Jan. 4 memo to 1,500 landlords urged them to draw on reserve cash to prevent evictions, now that departmental spending has dried up.
“Many agency officials,” the Post reported, “didn’t realize” that a HUD program covering thousands of tenants expired on Jan. 1.
The HUD memo obtained by the Post carries the subject “Impact of Government Shutdown on Multifamily FHA Mortgage Insurance Applications and Production Activities” and reads in part:

“Owners of properties with FHA insured mortgages or 202/811 Capital Advances may submit requests for releases from their reserve for replacement accounts to cover funding shortfalls caused by non-payment of monthly rental subsidy.”
Sections 202 and 811 cover capital advances and rent subsidies to expand housing opportunities for the elderly and individuals with disabilities, respectively.

Sunday, January 6, 2019

"Vaccines Did Not Cause Rachel's Autism"

Andrew Dansby at The Houston Chronicle:
To Dr. Peter Hotez’s credit, he braided together three books into “Vaccines Did Not Cause Rachel’s Autism” without creating a tome too weighty to be engaging. Hotez — a vaccine scientist and pediatrician — could easily have written a book focused on the folly of the anti-vaccination movement. And he also could have written a book about the history of science behind vaccinations. He also could have further developed a parenthood narrative from his and his wife’s point of view about raising their daughter Rachel, who is autistic.
Because Hotez deftly overlaps these three stories, each is compressed in a way that feels both relatable and comprehensible. The breadth of research and the personal aspect of the book provide a delicate balance.
“I don’t know if it’s a new genre in science books,” Hotez says, “but I don’t think there’s anything else quite like it. It’s a science book, right? That also explains why vaccines don’t cause autism. While also telling a personal story. I can’t say, but my hope is that will make it meaningful to others.”

Saturday, January 5, 2019


In The Politics of Autism, I discuss the self-advocacy and the neurodiversity movement.

Michael Bernick at The Wall Street Journal:
Our group, known as Aascend—an acronym for Autism, Asperger Spectrum Coalition for Education, Networking and Development—is one of several autism mutual-support groups that have arisen across the U.S. I’ve been part of Aascend since 2011, as a family member of an adult with autism. We consider ourselves part of the long tradition of American voluntary associations celebrated by Alexis de Tocqueville in the 1830s and by many social scientists since. Only now, in 21st-century America, the autism associations’ Tocquevillian culture of mutual support makes them stand out.

Aascend’s main focus for the past few years has been on employment. Though data are scarce, the largest recent study of autism employment, from Drexel University in 2017, found that only 14% of adults with autism and using government disability services held a paying job. The estimates have changed little in the past three decades, despite the numerous government departments and initiatives serving workers with disabilities.

Aascend members help each other advance. Last week an email arrived from a parent with a son on the autism spectrum. Although the son has a college degree in computer science, he hasn’t been able to find a job. I forwarded the email to Mr. Jayaraman, who agreed to help with job leads. Brian Jacobs, a prominent venture capitalist, has used his tech network to identify opportunities, as has Dan Simpson at Cruise Automation. Three of our members are working now at the software company SAP, with others at Amazon, Apple and in local government. Aascend has also met with Salesforce , Airbnb, Pinterest and LinkedIn—all local employers with budding autism-targeted initiatives.

Friday, January 4, 2019

Pelosi Mentions ADA

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

In her prepared remarks on assuming the speakership, Nancy Pelosi spoke of the Americans with Disabilities Act:
I close by remembering a cherished former Member of this body, who rose to become a beloved President, and who, last month, returned once more to lie in state.

That week, we honored President George Herbert Walker Bush with eulogies, tributes and tears.

Today, I single out one of his great achievements – working with both Democrats and Republicans to write the Americans With Disabilities Act into the laws of our land.

In 2010, we marked the 20th anniversary of the Act by making it possible for our colleagues with disabilities to preside over the House.

In that same spirit of equality and justice, let me announce that, this afternoon, the first Speaker Pro Tempore of the 116th Congress will be: Congressman Jim Langevin of Rhode Island.

Thursday, January 3, 2019

Cross-Cultural Study of Screening Instruments

In The Politics of Autism, I explain that professionals cannot yet reliably diagnose autism through blood tests or brain scans, so they have to rely on observation of behavior.  There are multiple problems with this approach, including cultural differences.
Moreover, the definition of behavioral symptoms rests on Western – and specifically American – expectations about the behavior of children and adults. But what is “autistic” in this context may be “normal” in another. In rural South Africa, for instance, young children avoid direct eye contact with adults because their culture considers it disrespectful.
Sophie Carruthers and colleagues have an article at Molecular Autism titled  "A Cross-Cultural Study of Autistic Traits Across India, Japan and the UK."  The abstract:
Background: There is a global need for brief screening instruments that can identify key indicators for autism to support frontline professionals in their referral decision-making. Although a universal set of conditions, there may be subtle differences in expression, identification and reporting of autistic traits across cultures. In order to assess the potential for any measure for cross-cultural screening use, it is important to understand the relative performance of such measures in different cultures. Our study aimed to identify the items on the Autism Spectrum Quotient (AQ)-Child that are most predictive of an autism diagnosis among children aged 4–9 years across samples from India, Japan and the UK. 
Methods: We analysed parent-reported AQ-Child data from India (73 children with an autism diagnosis and 81 neurotypical children), Japan (116 children with autism and 190 neurotypical children) and the UK (488 children with autism and 532 neurotypical children). None of the children had a reported existing diagnosis of intellectual disability. Discrimination indices (DI) and positive predictive values (PPV) were used to identify the most predictive items in each country.
Results: Sixteen items in the Indian sample, 15 items in the Japanese sample and 28 items in the UK sample demonstrated excellent discriminatory power (DI ≥ 0.5 and PPV ≥ 0.7), suggesting these items represent the strongest indicators for predicting an autism diagnosis within these countries. Across cultures, good performing items were largely overlapping, with five key indicator items appearing across all three countries (can easily keep track of several different people’s conversations, enjoys social chit-chat, knows how to tell if someone listening to him/her is getting bored, good at social chit-chat, finds it difficult to work out people’s intentions). Four items indicated potential cultural differences. One item was highly discriminative in Japan but poorly discriminative (DI < 0.3) in the UK and India, and a further item had excellent discrimination properties in the UK but poorly discriminated in the Indian and Japanese samples. Two additional items were highly discriminative in two cultures but poor in the third.
Conclusions: Cross-cultural overlap in the items most predictive of an autism diagnosis supports the general notion of universality in autistic traits whilst also highlighting that there can be cultural differences associated with certain autistic traits. These findings have the potential to inform the development of a brief global screening tool for autism. Further development and evaluation work is needed.

Wednesday, January 2, 2019

Italian Official Quits, Cites Government's Anti-Science Stance

In 2017 Italy required vaccinations for pre-schoolers. The Five Star Movement, opposed the move, appealing to the belief that vaccines cause autism. The movement is now part of a coalition government.

The president of Italy's national health research organisation on Wednesday January 2nd said he had been driven to resign due the "anti-scientific" policies of the country's populist government including efforts to undermine confidence in vital vaccinations.

Professor Walter Ricciardi of the National Health Institute (ISS) said an aversion to evidence-based policy among the coalition of Italy's far-right League and anti-establishment Five Star Movement (M5S) put public health at risk.

"Representatives of the government have endorsed unscientific or frankly anti-scientific positions on many issues," he said in an interview with the Corriere della Sera daily.
"It's clear that when the deputy prime minister says that he, as a father, believes there are too many obligatory, useless and dangerous vaccines, that's not just unscientific, it's anti-scientific," he said in reference to League head Matteo Salvini.
 "And yet these are issues that are decisive for public health," he said. "All this reminds me of Donald Trump's recommendation to the US National Health Institute to no longer use the term 'evidence-based'. "It's an approach taken by populists, who have great difficulty in interacting with science," Ricciardi added.

Tuesday, January 1, 2019

Autism Speaks: Looking Back on 2018

In The Politics of Autism, I write about the major organizations in the field, including Autism Speaks.

From Autism Speaks:
As we ring in the New Year, join us in celebrating some highlights of 2018!Th

Through strategic partnerships and the support of the autism community, the Autism Speaks Advocacy Team pursues policy solutions for individuals across the spectrum and throughout the lifespan. This year, we worked to:
Be a catalyst for life enhancing research breakthroughs.
Increase early childhood screening and timely interventions.
  • Funding for the Children's Health Insurance Program (CHIP) was extended until 2027. 
  • New CPT codes were approved for ABA services through our work on the CPT Steering Committee.
  • Medicaid reimbursement rates for ABA professionals were increased, benefitting families who were having difficulty finding providers to serve them.
  • The Departments of Labor, HHS, and Treasury provided guidance under the Mental Health Parity and Addiction Equity Act, singling out ABA as a treatment for autism that in many cases must be covered.
Improved coverage of autism across the US!
Improve outcomes for transition-age youth.
  • California enacted legislation to create and fund the “Breaking Barriers in Employment for Adults with Autism Pilot Program” in the counties of Sacramento and Los Angeles.
  • Georgia enacted Georgia's Employment First Act, promoting employment as the first and preferred option offered to people with disabilities receiving government funded services.
  • North Carolina funded a high-tech autism employment pilot program.
  • The US House Committee on Small Business held a hearing titled, “Ready, Willing, and Able to Work: How Small Businesses Empower People with Developmental Disabilities." Autism Speaks President and CEO Angela Geiger testified at the hearing.
  • The Carl D. Perkins Career and Technical Education Act was reauthorized, helping to increase access to education and employment opportunities for people with autism and other disabilities.
  • The Congressional Autism Caucus hosted a briefing on the challenges and opportunities to improve law enforcement interactions with the autism community.Oklahoma added $2 million to its budget to address the wait list for Medicaid home and community-based services.
Ensure access to reliable information and services throughout the life span.
Many thanks to advocates like you who take action on behalf of the autism community!