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.

Anne V. Kirby and colleagues have an article at Autism Research titled "A 20‐Year Study of Suicide Death in a Statewide Autism Population."

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.

The Shutdown Hurts People with Disabilities

The Politics of Autism discusses legislation before Congress.

Alicia Epstein, Susan Prokop, and Philip Kahn-Pauli write at The Hill:

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.

"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.

Initiative to Address the Inappropriate Use of Restraint and Seclusion

In The Politics of Autism, I discuss 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.”

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."

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: https://www.facebook.com/ncsautism/Twitter: @ncsautismorg

Mail:

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

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.”