Air Travel and Hidden Disabilities

 In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  One challenge is that autism is an "invisible disability," which does not have obvious physical markers.  

Kerri Westenberg at the Minneapolis Star Tribune

The Hidden Disabilities Sunflower program, which is designed to ease travel for people with disabilities, has arrived at Minneapolis-St. Paul International Airport.

The program got its start at London's Gatwick Airport in 2016.

Travelers at MSP can now pick up a sunflower lanyard, which indicates to airport staff that the person may need assistance or extra time to navigate the airport.

...

The sunflower lanyard signals that someone may need more help for a host of reasons, including low vision, hearing loss, autism and post-traumatic stress disorder. Passengers should still arrange for assistance with their airlines if disability services are needed.

The Hidden Disabilities Sunflower program has grown across Europe and is now in nearly 10 U.S. airports including Orlando, Miami, Seattle, San Jose and New York-JFK.

Autism and COVID in Guam

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all. Providing education and social services is proving to be very difficult. 

 John O'Connor at the Guam Daily Post:

With Guam schools still closed over COVID-19 concerns, many parents have had to double as teachers, even if only to help with online learning or hard copy lessons. It has been a somewhat traumatic experience, Abigail Ogo said.

"I even got myself a lesson planner. With that it helps me with the kids and the boys and their lessons every day, just so I don't go insane with where I start," she said.

But in addition to home schooling, the mother of five is also one of many parents on island navigating the pandemic with the unique challenge of raising a child with autism.

There are 244 children within the Guam Department of Education with autism, but that represents only public school students. Josephine Blas, president of Guam Autism Community Together, estimates there might be around 500 children with autism on island.

Navigators

 In The Politics of Autism, I discuss the difficulties facing families of newly-diagnosed children.

Kris Pizur-Barnekow, Amy C Lang, Brian Barger  have a short report at Autism titled "Development and Utility of the Family-Centered Autism Navigation Interview." 

From the report:

 Family navigators (FNs) are professionals with lived experience of having a child with ASD or special healthcare needs who engage families to enhance access to early identification and intervention services. Emerging research describes important components of family navigation (Feinberg et al., 2016) and shows FNs increase service initiation and ongoing engagement (Feinberg et al., 2016). However, research on the development of family navigation interventions primarily focuses on FN training with less attention paid to the protocols and products used by FNs to facilitate or enhance the family navigation process.

 Feinberg, E., Abufhele, M., Sandler, J., Augustyn, M., Cabral, H., Chen, N., Linhart, Y. D., Levesque, Z. C., Aebi, M., & Silverstein, M. (2016). Reducing disparities in timely autism diagnosis through family navigation: Results from a randomized pilot trial. Psychiatric Services, 67(8), 912– 915. https://doi.org/10.1176/appi.ps.201500162

The lay abstract:

When a parent learns of their child’s autism diagnosis, they may be overwhelmed, confused, and frustrated. Family navigation services are designed to improve access to care. While these services are a promising intervention to enhance well-being and developmental outcomes, there are limited tools that can systematically facilitate the development of a shared navigation plan that prioritizes the concerns of the family. The Family-Centered Autism Navigation semi-structured interview guide is designed for family navigators to triage and prioritize caregiver’s needs to coordinate and navigate systems of care after learning of their child’s autism spectrum disorder diagnosis. The goals of the Family-Centered Autism Navigation interview are to (1) identify family and child strengths; (2) identify family/caregiver concerns regarding navigation of services and systems following their child’s diagnosis of autism; (3) measure change in caregiver knowledge, ability and skill as it relates to understanding, remembering, and evaluating information they receive; and (4) assist with the development of a shared navigation plan. When using the Family-Centered Autism Navigation guide, family navigators and caregivers co-create a family-centered, prioritized action plan that supports and prepares caregivers as they navigate systems of care. This short report describes the development process of the Family-Centered Autism Navigation semi-structured interview guide. We utilized brief interviews (n = 42), expert feedback (n = 13), and quality improvement strategies (n = 2 family navigators) to develop the questions and determine the usability of the Family-Centered Autism Navigation interview in practice.

Antivaxxers, November 2020

 In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

 From The Week:

Much of the blame for the surge in anti-vax sentiments in recent years has been attributed to the work of discredited ex-physician Andrew Wakefield, who in the late 1990s wrongly claimed that the measles, mumps, and rubella (MMR) vaccine had the potential to cause autism in children.

Wakefield’s work “has caused multiple measles outbreaks in Western countries where the measles virus was previously considered eliminated”, according to the authors of a 2018 paper titled “The Anti-vaccination Movement: a Regression in Modern Medicine”.

The paper, published in the US National Library of Medicine National Institutes of Health, also points the finger at “social media” and even TV talk show hosts for playing a “big role in miseducation” by giving a platform to anti-vax theories.

And with many people using social media sources to stay updated about the coronavirus pandemic, the “stakes are now higher than ever”, Politico says. A Cabinet Office official told the site that Downing Street is currently “monitoring false claims” about Covid vaccinations online.

These claims include baseless suggestions that children will be vaccinated without parental consent; that the Army will coerce people to receive the vaccine; and that people have died as a result of taking part in a vaccine trial. Russian propagandists have also spread reports that the Oxford University-developed vaccine could turn people into chimpanzees.

Looking for Autism Biomarkers

Uncertainty is the major theme of The Politics of Autism.  

 Brita Belli at Yale:

Five years ago, a Yale-led partnership launched a landmark study to identify the biomarkers, or biological indictors, of autism that could help diagnose, track, and assess treatments in patients.

Since then, the Autism Biomarkers Consortium for Clinical Trials has discovered the first two biomarkers for any psychiatric disorder to be accepted into the U.S. Food and Drug Administration’s (FDA) Biomarker Qualification Program, an advance that could lead to new treatments through drugs and other interventions.

The study recently received $39 million for a second phase in which researchers will seek to replicate the findings of the first phase and test a younger group of preschool-aged children. The next stage will begin in the new year.

“Everything we do to treat autism is currently based on clinical subjective decisions,” said James McPartland, professor in the Yale Child Study Center and of psychology, who has led the study for the past five years and will direct the renewal. “It’s not the same as making decisions based on biology.”

Autism affects 1 in 54 children in the U.S., including 1 in 34 boys, according to the Centers for Disease Control and Prevention.

In the initial study, the largest of its kind in this country, researchers tested nearly 400 children, 280 with autism and 119 with typical development. The participants were aged 6 to 11 and represented a wide range of IQs.

To identify the biomarkers, the researchers used one of the oldest methods of brain imaging — electroencephalography (EEG) — in which brain activity is measured through the placement of electrode sensors on the scalp, as well as eye tracking.

At three different times, scientists measured how the children responded to various cues. Both of the biomarkers they discovered were related to how children with autism responded to human faces; one involved the brain’s neural processing of a face, the other measured the child’s visual attention to people. “Children with autism showed slower than expected brain responses to faces and paid less attention to faces,” McPartland said.

They were the first two biomarkers for a neurodevelopmental disorder or psychiatric condition accepted to the FDA’s Center for Drug Evaluation and Research Biomarker Qualification Program. The researchers are now working with the FDA to develop methods for evaluating additional biomarkers for these types of disorders.

In the second phase, researchers will follow up with the same group of children evaluated during the first phase, who are now 11 to 16 years of age, to see whether the biomarkers have remained stable and whether they might predict subsequent outcomes in the child’s life. In addition, they will also evaluate these biomarkers in a group of younger children — ages 3 to 5 — both with and without autism.

McPartland, who is director of the Yale Developmental Disabilities Clinic, said this research offers new possibilities for treating autism. “These are considered intervention and drug development tools,” he said of the biomarkers. “The field doesn’t have a way of measuring how treatments affect autism except through clinical observation. We hope these will be sensitive biological measures to achieve this goal.”

In addition to the potential for drug companies and intervention developers to identify treatments for autism, McPartland said the biomarkers may offer clinicians a better understanding of how behavioral and therapeutic tools might benefit children with autism and which patients might benefit the most.

Disparities

In The Politics of Autism, I write about the experiences of different economic, ethnic and racial groups.   Inequality is a big part of the story. 

At The Journal of Autism and Developmental Disorders, Lucy A. Bilaver, Sarah A. Sobotka & David S. Mandell have an article titled "Understanding Racial and Ethnic Disparities in Autism-Related Service Use Among Medicaid-Enrolled Children."

Significant racial and ethnic disparities in autism-related services were found among Medicaid enrolled children with ASD. Black, Asian, and Native American/Pacific Islanders received fewer outpatient, autism-related services compared with white children, but there was no disparity among Latinx children. There were no disparities in school-based services. To our surprise black and Asian children received more services than white children in the school setting. Disparities in case management/care coordination services were largest; there was a significant 8.3, 7.3, and 1.9 percentage point disparity for Asian, Latinx, and black children respectively. In stratified analyses, we found a disparity for black children (6 percentage points) in outpatient services for children living in large metro areas.

...

When compared with white children, black children with ASD were 5.3% less likely to use outpatient autism related services but 5.6% more likely to use school-based services, a result driven by children living in large metro areas. One hypothesis to explain this substitution effect would be easier access and availability of school-based services compared with outpatient services in large metro counties with large concentrations of minority children. Although obtaining an individualized education plan to receive school-based services can be challenging for families (MacLeod et al. 2017; Salembier and Furney 1997), at least the process typically occurs in the building where a child attends school and requires no additional family travel. A second hypothesis is that the school context, including racial composition and fiscal resources, are associated with the propensity to place minority children in special education and possibly bill Medicaid for school-based services. There is a significant body of literature that has documented a higher likelihood of special education placement among minority children (National Research Council 2002; Zhang et al. 2014); however, recent studies have challenged this finding after more fully controlling for socioeconomic correlates, school context, and type of disability (Fish 2019; Morgan et al. 2017; Schussler et al. 2016). It is possible that the pattern of greater service use among black children stems in part from this legacy as well as variation in school-based Medicaid billing practices. Future research should examine the contribution of school context including racial composition and fiscal resources on disparities.

Lawsuit in Salt Lake Shooting

In The Politics of Autism, I discuss interactions between police and autistic people.  Police officers need training to respond appropriately.  When they do not, things get out of hand. A recent incident in Salt Lake City is getting national attention.

 Leia Larsen at The Salt Lake Tribune:

The parents of a 13-year-old boy with autism have filed a federal lawsuit against the Salt Lake City Police Department and the officer believed to have shot and injured the teen.

On Sept. 4, Linden Cameron’s mother, Golda Barton, called police for help while her son was having a mental health episode. The responding officers opened fire on the unarmed teenager instead, severely injuring him. Linden’s family has sought justice in the months since, and his story has rallied groups seeking police reform in Utah.

A complaint filed in Utah District Court on Monday alleges police shot Linden 11 times.

The civil lawsuit also claims the responding officers should have known Linden had mental health issues because Barton had told dispatchers about his autism and that he needed a “mental health worker, because he’s sick.” At least four officers responded, according to the complaint, which “were not trained as mental health workers” and “were not trained as crisis intervention team officers.” At least one officer allegedly acknowledged Linden has a “sensory disorder.”

Special Ed and COVID-19

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all. Providing education and social services is proving to be very difficult. 

The Government Accountability Office has a report titled "DISTANCE LEARNING Challenges Providing Services to K-12 English Learners and Students with Disabilities during COVID-19."

[A] variety of factors complicated the delivery of special education services during distance learning, according to officials from the four districts selected by GAO and representatives of national organizations of school administrators and service providers. Such factors included: the wide range of needs of students with disabilities served under the Individuals with Disabilities Act (IDEA); the services specified in their individualized education programs; and the capacity of parents or caregivers to assist teachers and service providers in delivering general education, specialized instruction, and related services to their children. Delivering related services—such as occupational therapy, physical therapy, or speech therapy—for students with complex needs was particularly difficult to do remotely. School district officials we spoke with said they successfully addressed some challenges by modifying instruction, holding virtual meetings with parents, and encouraging collaboration between general and special education teachers. For example, some districts altered students’ goals and services in temporary distance learning plans. Officials from two districts told us they are considering using virtual meetings after returning to in-person education and would use them, as warranted, during future school closures

Elle McPherson Joins Antivaxxers

 In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.   And among those diseases could be COVID-19.

The antivaxxers have been at it for a very long time.

Paula Froelich at The New York Post:

Supermodel Elle Macpherson has taken a break from shilling her many beauty wares and frolicking in skimpy bikinis on the beach to promote an anti-vaccination campaign led by her boyfriend, disgraced former doctor, Andrew Wakefield.

Saying the pandemic is a “divine time” to promote the dangerous message, Macpherson took to the stage before an audience in North Carolina to help boost an anti-vaccination propaganda video — just as Pfizer and other pharmaceutical companies announced a new breakthrough vaccine for COVID-19.

The Aussie model took the stage with Wakefield, a former doctor who was banned from practicing after he presented bogus research claiming the measles vaccine leads to autism, to help present the latest installment in his anti-vax propaganda.

According to footage of the event obtained by the Daily Mail, after Macpherson was introduced by Wakefield, who called her his girlfriend, she turned to him and said: “You made this film during COVID, and it’s interesting because it’s such beautiful, sacred timing when you watch the film, because it’s so pertinent and so relevant. … And for it to come in this divine time where vaccination and mandatory vaccination is on everybody’s lips.”

Medical Research Network

In The Politics of Autism, I describe the difficulties of finding reliable information:

One problem is that a good deal of the solid research about autism lies in academic journals behind an Internet paywall, open only to people who have a university library card or can afford the journals’ exorbitant prices ($35 or more per article). Says neuroscientist Sophia Colamarino: “In today’s information age, where essentially anything said by anyone can be made accessible within a matter of moments, it is unfortunate that families have easy access to all BUT the most scientifically valid information, that which can be found in scientifically reviewed research literature.” NIH and Autism Speaks have tried to remedy this situation by requiring its research grant recipients to put any resulting peer-reviewed research papers on the PubMed Central online archive, but this policy affects only a fraction of the literature on autism.

A positive development from the Social Science Research Network:

Just a quick update to our user community about the advances SSRN has made in the assemblage and dissemination of medical preprints in general, and of COVID research more particularly. Our MEDICAL RESEARCH NETWORK (MedRN) currently boasts more than 21,000 papers, making it the largest source of medical preprints in the world! Be sure to check it out at https://www.ssrn.com/index.cfm/en/medrn/. Also, since March 2020, we've processed and distributed nearly 6,000 COVID-related papers from researchers worldwide. From hardcore medical clinical studies https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3696875 to more interdisciplinary analyses of the legal, political, societal, and economic fallout https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3714304, you're sure to find it in SSRN's Coronavirus Hub https://www.ssrn.com/index.cfm/en/coronavirus/.

For all the latest scientific, regulatory, and economic research on VACCINES, be sure to consult SSRN's new Vaccine Hub https://ssrn.com. For more information, please contact Brian St. Germain, Director of Business Development, at bstgermain@ssrn.com.

Many of the papers deal with autism.

 

Antivaxxers Who Are Trying for the Darwin Award

 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.  Trump has helped spread misinformation.

Olivia Messer at The Daily Beast:

As many Americans responsibly don face masks, distance from their families, and await the arrival of a COVID-19 vaccine, a group of 300 people sat tightly packed on hay bales Sunday at a Virginia farm to hear anti-vaccination activists and “ancestral health” experts offer up an alternate reality.

The event was hosted by the Weston A. Price foundation—a nonprofit “dedicated to restoring nutrient-dense foods to the human diet through education, research and activism,” according to its website. It was held at the Swoope, Virginia-based Polyface Farm, owned by the infamous Joel Salatin, whose own website describes him as a “Christian libertarian environmentalist capitalist lunatic farmer.”

Time once called 63-year-old Salatin the “world’s most innovative farmer,” and he was profiled in Mother Jones this week, in a piece that dug into how Salatin became a “media darling.”

The size of the gathering at Polyface Farms would be ripe for condemnation anywhere during a deadly pandemic, but it was especially stunning in Swoope, which The Staunton News Leader reported had a whopping 52 percent positivity rate on Wednesday.

...

According to several social media posts from the event, speakers included Del Bigtree, the chief executive officer of anti-vaccination group Informed Consent Action Network; Mike Dickson, a former professional bodybuilder turned full-time farmer; Hilda Labrada Gore, an “ancestral health expert;” Sally Fallon Morell, author of Nourishing Traditions: The Cookbook that Challenges Politically Correct Nutrition and the Diet Dictocrats and The Contagion Myth, which her website claims was banned by Amazon; and Salatin himself.

The "foundation" in question has long peddled the bogus notion that vaccines cause autism. Bigtree is a notorious proponent of the idea, and has hijacked the yellow Star of David badge, which some European Jews had to wear during the Holocaust, to symbolize their “persecution” by government vaccine rules.

Genetic Testing and Autism

In The Politics of Autism, I explain:

When a pregnancy is under way, doctors can detect certain kinds of disorders, but neither amniocentesis nor any other prenatal test can currently tell us whether a fetus will become autistic. Suppose that such a test did exist. “The best case use of a prenatal test at the moment would be if you could say to a parent, your child has got an 80 percent likelihood of autism and so once the baby's born, we would like to keep a close eye on that child in case they need extra support like speech therapy or social skills training or some sort of behavioral approach,” says leading autism scientist Simon Baron-Cohen. But would the “best case use” be the most common? When amniocentesis indicates Down Syndrome, most mothers choose abortion. A study of autism parents in Taiwan found that just over half would abort if a prenatal test indicated that their next child would be autistic. We cannot be sure what the figures would be if such tests were available in the United States, but it seems likely that a large share of autism pregnancies would end in abortion.

Sarah Zhang at The Atlantic:

For those with the money, the possibilities of genetic selection are expanding. The leading edge is preimplantation genetic testing (PGT) of embryos created through in vitro fertilization, which altogether can cost tens of thousands of dollars. Labs now offer testing for a menu of genetic conditions—most of them rare and severe conditions such as Tay-Sachs disease, cystic fibrosis, and phenylketonuria—allowing parents to select healthy embryos for implantation in the womb. Scientists have also started trying to understand more common conditions that are influenced by hundreds or even thousands of genes: diabetes, heart disease, high cholesterol, cancer, and—much more controversially—mental illness and autism. In late 2018, Genomic Prediction, a company in New Jersey, began offering to screen embryos for risk of hundreds of conditions, including schizophrenia and intellectual disability, though it has since quietly backtracked on the latter. The one test customers keep asking for, the company’s chief scientific officer told me, is for autism. The science isn’t there yet, but the demand is.

The politics of prenatal testing for Down syndrome and abortion are currently yoked together by necessity: The only intervention offered for a prenatal test that finds Down syndrome is an abortion. But modern reproduction is opening up more ways for parents to choose what kind of child to have. PGT is one example. Sperm banks, too, now offer detailed donor profiles delineating eye color, hair color, education; they also screen donors for genetic disorders. Several parents have sued sperm banks after discovering that their donor may have undesirable genes, in cases where their children developed conditions such as autism or a degenerative nerve disease. In September, the Georgia Supreme Court ruled that one such case, in which a sperm donor had hidden his history of mental illness, could move forward. The “deceptive trade practices” of a sperm bank that misrepresented its donor-screening process, the court ruled, could “essentially amount to ordinary consumer fraud.”

#CripTheVote and President-Elect Biden

In The Politics of Autism, I discuss the issue's role in campaign politics.   In the 2016 campaign, a number of posts discussed Trump's bad record on disability issues more generally.   As his actions as president indicated, he has little use for Americans with disabilities.

President-elect Biden has a much better record but some activists are wary.

Kayla Hui verywellhealth:

#CripTheVote is a nonpartisan campaign that engages politicians and voters on disability issues in the United States. It was coined by Alice Wong, a disabled activist, media maker, and founder and director of the Disability Visibility Project. The campaign chose this name in part because "selective use of 'crip' or 'crippled' by people with disabilities is a conscious act of empowerment through 'reclaiming' a former slur as a badge of pride," according to the #CripTheVote website.

“We had the idea for the campaign, centering Disability justice as a means of reshaping those politics,” Gregg Beratan, #CripTheVote co-organizer and disabled activist tells Verywell.
...

According to Beratan, community priorities will only be met with pressure. “Pressure from the #CripTheVote community or a group like ADAPT will be needed," Beratan says. "I believe that is the only way the Disability Community has ever gotten anything."

“Biden was the last candidate to release a disability policy, and he only did so after being hounded by the Disability Community,” Beratan continues to explain. “President-elect Biden has shown little sign that he intends to prioritize our community.”

More on Autistic Pols

In The Politics of Autism, I write:  "Support from the general public will be an important political asset for autistic people. Another will be their sheer numbers, since a larger population of identified autistic adults will mean more autistic voters and activists."  Previous posts have discussed autistic officeholders and political candidates in New York, Georgia, Texas, and Wisconsin.

Earlier posts discussed  Jessica Benham's election to the Pennsylvania House.

Eric Garcia at Spectrum:

Jessica Benham was born a few months after the passage of both the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA) in 1990. It’s something that Benham, who is autistic, highlighted when I spoke to her on 5 November, two days after she won a seat in Pennsylvania’s state legislature, representing the Pittsburgh area. Those laws paved the way for her and other autistic politicians taking office.

In addition to Benham, two other state legislators — Democrat Yuh-Line Niou of New York and Republican Briscoe Cain of Texas — have said they are autistic, but Cain didn’t reveal his diagnosis until after he was elected. He did so in a speech on the Texas House floor last year, when he proposed a resolution to make April Autism Awareness Month. Niou first spoke about her autism in an interview with a website run by college students when she ran in 2016, and elaborated on it after she was elected.

By contrast, Benham, a Democrat, was openly autistic when she announced her run for office last year, and she made it a central part of her persona as a candidate.

Biden Can Undo Much of Trump's Damage

In The Politics of Autism, I discuss the issue's role in campaign politics.   In the 2016 campaign, a number of posts discussed Trump's bad record on disability issues more generally.   As his actions as president indicated, he has little use for Americans with disabilities.

Andy Slavitt at USA Today:

Through executive action, Trump has tilted the health care playing field to be increasingly unfair and uneven, particularly to marginalized communities. But what has been done through executive action can be almost entirely undone the same way. The public charge rule discourages immigrants from using their legal benefits. Medicaid work requirements discriminate against low-income people. The administration has also acted to discriminate against transgender Americans and weaken protections for Americans with disabilities. On Day One, Biden should bring all of these to an end — or start the process to undo them.

Spotting Misinformation

 In The Politics of Autism, I look at the discredited notion that vaccines cause autism.  Twitter, Facebook, and other social media platforms have helped spread this dangerous myth.

The prospect of a COVID vaccine is ramping up misinformation and conspiracy theory.

At Nature, Nic Fleming identifies eight ways to spot misinformation about COVID, vaccines, and just about anything else.

1. Source suspicion. Vague, untraceable sources, such as ‘a doctor friend of a friend’ or ‘scientists say’ without further details, should ring alarm bells.
2. Bad language. Most trustworthy sources are regular communicators, so poor spelling, grammar or punctuation are grounds for suspicion.
3. Emotional contagion. If something makes you angry or overjoyed, be on your guard. Miscreants know that messages that trigger strong emotions get shared the most.
4. News gold or fool’s gold? Genuine scoops are rare. If information is reported by only one source, beware — especially if it suggests that something is being hidden from you.
5. False accounting. Use of fake social-media accounts, such as @BBCNewsTonight, is a classic trick. Look out for misleading images and bogus web addresses, too.
6. Oversharing. If someone urges you to share their sensational news, they might just want a share of the resulting advertising revenue.
7. Follow the money. Think about who stands to gain from you believing extraordinary claims.
8. Fact-check check. Go past the headlines and read a story to the end. If it sounds dubious, search fact-checking websites to see whether it has already been debunked.

VICE Report on Restraint

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.

 Alice Hines and Agnes Walton at VICE:

At least 20 children have died as a result of restraints since 2001, according to press clippings and Government Accountability Office reports identified by VICE News. They range from a 7-year-old girl who was restrained multiple times in a mental health clinic; a 15-year-old boy with autism who was pinned by four employees to the ground for over an hour; and a 17-year-old who died in a church-run treatment center after she choked in a restraint.

In 2012, the Department of Education published guiding principles for the use of all types of physical restraint: they are supposed to be emergency safety interventions, and used only when a child puts themself or someone else in imminent danger. But it’s hard to tell whether this guidance is being followed. There is no comprehensive data on how often physical restraints occur or what prompts them. Nor does the government track how many children are injured or killed in restraints.

Cornelius Fredrick was the latest. On May 1, the 16-year-old asphyxiated and died two days after he’d been placed in an on-the-ground “supine” restraining hold at the Minnesota residential facility for foster kids and juvenile offenders where he lived. Fredrick was restrained after throwing a sandwich in the cafeteria. A prior VICE News investigation interviewed 19 former staff and students at the facility, Lakeside Academy, who said restraints were used commonly to punish small infractions and keep order on campus.

Autistic Candidates and Office Holders

In The Politics of Autism, I write:  "Support from the general public will be an important political asset for autistic people. Another will be their sheer numbers, since a larger population of identified autistic adults will mean more autistic voters and activists."  Previous posts have discussed autistic officeholders and political candidates in New York, Georgia, Texas, and Wisconsin.

Yesterday's post discussed  Jessica Benham's election to the Pennsylvania House.

Nico Lang at them:

But on a positive note, Benham wasn’t the only neurodiverse person to win their state legislative race on Tuesday. Yuh-Line Niou, who is also autistic, won reelection to the New York State Assembly. There have only been three autistic lawmakers to ever serve in a state’s legislature in the United States, a tally which also includes Texas House Representative Briscoe Cain.

In Louisiana, Rob Anderson finished third in his race for Congress. 

In Upstate New York, Dylan Dailor lost his June primary.

Autistic Candidate Wins in Pennsylvania

In The Politics of Autism, I write:  "Support from the general public will be an important political asset for autistic people. Another will be their sheer numbers, since a larger population of identified autistic adults will mean more autistic voters and activists."  Previous posts have discussed autistic officeholders and political candidates in New York, Georgia, Texas, and Washington State

Ivan Pereira at ABC:

As an openly bisexual, autistic woman, Jessica Benham, of Pittsburgh, told ABC News she decided to run for a state legislature seat when she realized her communities have not been well represented in government.

Benham, 29, who co-founded and ran a grassroots advocacy group The Pittsburgh Center for Autistic Advocacy, said other autistic and LGTBQ Pennsylvanians share her sentiment.


"I was hearing from my community that they wanted to someone who was like them to be represented," she said. "Their voice was long unheard."

Benham will fill that void in the Pennsylvania House of Representatives next year. The Democrat won the race for District 36 -- which includes parts of Pittsburg -- with 62.5% of the vote on Election Day, according to election results.

...

"There is a stereotype that public office is only for people with neurotypical social skills, people who are extroverted," Sam Crane, the legal director for the nonprofit Autistic Self Advocacy Network, told ABC News. "Ms. Benham's success might help others realize that's not typically the case."
...

The Autistic Self Advocacy Network has a program for college and graduate students called the autism campus inclusion project, which trains autistic members on public policy and connects them with elected officials and policymakers. Benham is an alumnus of the program, according to Crane.

"One of the things that we tell our participants in ACI, our leadership training, is if you're not at the table, you're on the menu. We want to make sure that autistic advocates are involved in all of the policy discussions," Crane said.

Crane said she there have been other autistic members who have been elected to office at local levels including, Yuh-Line Niou, who serves in New York State Assembly.

President-Elect Biden and the Disability Community

In The Politics of Autism, I discuss the issue's role in campaigns.

Philip Pauli at RespectAbility:

Since winning the Democratic nomination, the Biden campaign has made disability issues and connecting to voters with disabilities a top priority. In May, the campaign released a comprehensive plan about how a Biden presidency would “enforce civil rights,” ensure “affordable health care,” expand “competitive, integrated employment,” “strengthen economic security,” improve “educational programs,” and address “affordable housing, transportation, and assistive technologies” needs in the community as well as advancing “global disability rights.”

To follow through on this outreach effort, the campaign hired Molly Doris-Pierce, a young woman with obsessive compulsive disorder (OCD), as their National Disability Engagement Director. Since coming onboard, the Biden campaign in June, Ms. Doris-Pierce hosted monthly roundtables on disability issues, including on housing, employment and academic accommodations. Further, in August, speakers with disabilities appeared throughout the virtual programming schedule of the Democratic National Convention.

The National Association of Councils on Developmental Disabilities

The National Association of Councils on Developmental Disabilities congratulates President-Elect Joe Biden and Vice President-Elect Kamala Harris. In his speech on Saturday, President-Elect Biden emphasized the importance of the disability community and highlighted his commitment to making our country a better place for all, including those with disabilities. We look forward to working with his administration to ensure the rights of all peoples with disabilities are protected and strengthened.

“This election—this year—has been unlike one that we’ve ever seen before,” said Donna Meltzer, CEO of the National Association of Councils on Developmental Disabilities. “But throughout it all, I was encouraged by all the voters and voters with disabilities that were focused on making sure their voice was heard at the ballot box. We are eager to work with President-elect Joe Biden and Vice President-elect Kamala Harris to help protect the ADA, the ACA and expand health care. We are thrilled to have a partner in the White House that understands that every person in this country should be treated with dignity and respect.”

Robyn Powell at Rewire:

For four years, marginalized communities, including people with disabilities, have experienced incessant attacks on our rights by Trump and the broader GOP. From repeated attempts to repeal the Affordable Care Act (ACA) to the withdrawal of important special education protections to policies targeting immigrants with disabilities, Trump’s presidency has threatened nearly every facet of the lives of people with disabilities. The recent confirmation of Justice Amy Coney Barrett was yet another assault on disability rights. Moreover, Congress—particularly the Republican members—made several attempts to weaken the Americans with Disabilities Act (ADA) by undermining the law’s enforcement provisions.

With Biden and Harris heading to the White House, people with disabilities are hopeful that we will have an administration committed to advancing rather than attacking our rights. Biden has previously pledged to make disability rights “central to my administration’s agenda,” saying “your voices must be heard, and not just heard, but listened to, because this is about an issue that matters to every American, equality and dignity.” Recognizing us during his victory speech was an essential first step.

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Disability rights have traditionally been considered a bipartisan issue. In fact, the ADA was signed into law by President George H.W. Bush with support from both Democratic and Republican senators. However, things have changed dramatically since Trump took office.