Sanders on Disability and Autism

In The Politics of Autism, I discuss the issue's role in presidential campaigns.  Democratic candidates are addressing the issue in some detail, recognizing that many voters have a connection.

From the Bernie Sanders policy statement on disability:

• Guaranteeing health care, including mental health care and home- and community-based services and supports without waitlists, asset or income restrictions, as a human right to everyone in America.
• Protecting and expanding the Social Security Disability Insurance and Supplemental Security Income programs by reversing the Trump Administration’s attack on SSDI/SSI, ending the massive disability application backlog, putting a stop to SSI’s draconian asset test and marriage penalty, and raising the SSI benefit level to 125 percent of the poverty level, lifting millions out of poverty.
• Aggressively enforcing the Supreme Court’s Olmstead decision, including for people with mental illness. As President, Sanders will work to enforce the Supreme Court’s landmark Olmstead decision protecting the rights of people with disabilities to get support in the community. The plan places particular priority on the humanitarian crisis in our country created by the incarceration of people with mental illness, leveraging Olmstead to ensure states fund the voluntary, community-based mental health services that can save lives and keep people in the community.
• Providing mandatory funding to ensure that the federal government provides at least 50 percent of the funding for serving students with disabilities, exceeding the federal government’s original commitment of 40 percent when IDEA was passed. The plan also provides schools with 100 percent of the additional costs of serving students with disabilities in the general education classroom above the cost of average per pupil expenditures.
• Using executive authority to reject both renewals of and new proposals from states to place disability and aging services under the control of for-profit managed care organizations, including reversing Iowa’s disastrous experiment with for-profit Medicaid privatization.
• Create a National Office of Disability Coordination, run by a person with a disability, focused on coordinating and making disability policy to advance the full inclusion of people with disabilities, including ensuring every aspect of our public resources are ADA compliant and that the civil rights of people with disabilities are protected and expanded.
• Ending subminimum wage for workers with disabilities while guaranteeing jobs and living wages in the community for all.
• Passing the Disability Integration Act, to establish a clear standard for the delivery of high-quality services.

Autism-specific proposals:

• Require condition-specific advisory committees, such as the Inter-Agency Autism Coordinating Committee, to include individuals with the relevant disability as at least half of the public members of the committee.
• Re-authorize the Autism CARES Act with provisions to increase the percentage of autism research funding allocated to the needs of autistic adults and services, grow the representation of autistic people and others with developmental disabilities in the Leadership and Education in Neurodevelopmental Disabilities programs, and center the voices of autistic people in autism policy.

Subminimum Wage as an Issue

In The Politics of Autism, I write:

Political conflict involves ideas and arguments for which the information is often murky, incomplete, interpretive, and open to manipulation. Just about everything concerning autism is subject to dispute. What is it? What causes it? How many different kinds of it are there? Who has it? What can we do about it? Is it even the right problem to be thinking about? All of these questions, and many others, are the stuff of bitter political battles. The stakes are high: according to one estimate, the national cost of supporting people with autism adds up to $236 billion per year. Of course, such numbers themselves entail controversy. An alternative perspective is that they do not represent the cost of autism, but rather the cost of discrimination against people who have it, and the failure to help them lead independent lives.

At Forbes, Andrew Pulrang discusses competing narratives of disability issues, including the subminimum wage:

Is the longstanding policy of allowing certain employers to pay some disabled workers to be paid less than Minimum Wage a necessary opening to employment opportunities for people with disablities? Or, is it an outdated and exploitative policy long overdue for repeal? Answers seem to depend on two vastly different ideas about disability and paid work.

Sub-minimum wage is better than nothing. People with intellectual and developmental disabilities, and some other “severe” disabilities, are paid less than minimum because they can’t realistically work in regular jobs. For these disabled people is about more than money. It’s about socialization, meaningful activity, and pride. Abolishing sub-minimum wage will only make them lose the jobs they have, making them worse off than before.

Or ...

Sub-minimum wage is fundamentally wrong. If it ever was justified, sub-minimum wage is long overdue to be abolished. Anyone who works for pay, committing their time and effort to do so, should be paid at least Minimum Wage. Disabled people experience enough poverty as it is, and the humiliation of being paid under Minimum Wage erases much of the purported pride they get from working. Plus, with the right support, people with intellectual and developmental disabilities are often a lot more capable in the workplace than even their families and closest allies are able to imagine.

The main reasons this issue isn’t already resolved are an understandable fear of change, a failure of imagination, and in some cases, the greed of employers who just want to preserve this source of cheap labor. Out of all the current disability issues, this may be the one closest to being solved. Presidential candidates Pete Buttigieg, Amy Klobuchar, Bernie Sanders, and Elizabeth Warren are all in favor of ending Sub-minimum wage, and some states have already done so successfully.

Cost of Cleaning Up Bloody Antivax Protest: $70k

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. Measles can kill.  The antivaxxers sometimes resort to harassment.

Hannah Wiley at The Sacramento Bee:

The California Senate paid at least $70,000 to clean and disinfect its chamber after an anti-vaccine activist threw a menstrual cup that splattered lawmakers with blood in September.

According to invoices obtained by The Sacramento Bee through the Legislative Open Records Act, the Senate paid $8,700 to ForensiClean, a Sacramento company that specializes in the “removal of blood and other potentially infectious material,” and $62,595 to NRC US Holding Company, an agency that sends response teams to manage “spill and high hazard” situations.

Rebecca Dalelio had traveled to the Sacramento Capitol to protest legislation, since signed into law, that restricts when doctors can write vaccine medical exemptions for California school children.

ADOS Problems

In The Politics of Autism, I discuss the uncertainty surrounding diagnosis of autism and estimates of its  prevalence. 

A release from Rutgers:

Rutgers researchers have found that a test widely used to diagnose whether children have autism is less reliable than previously assumed.

The study is published in the journal Neural Computation.

The standardized test, known as the Autism Diagnostic Observation Schedule (ADOS), assesses communication skills, social interaction and play for children who may have autism or other developmental disorders.

The researchers digitized the test by attaching wearable technology, like an Apple Watch, to two clinicians and 52 children who came in four times and took two different versions of the test.

When researchers looked at the scores of the entire cohort, they found they did not distribute normally – which could mean a chance of false positives inflating the prevalence of autism, among other implications.

The results showed that switching clinicians may change a child’s scores and consequently influences the diagnosis. The researchers found similar results when they analyzed open-access data of 1,324 people ages 5 to 65, said Elizabeth Torres, associate professor of psychology in Rutgers’ School of Arts and Sciences, and director of The New Jersey Autism Center of Excellence.

“The ADOS test informs and steers much of the science of autism, and it has done great work thus far,” said Torres, whose expertise has brought emerging computer science technology to autism. “However, social interactions are much too complex and fast to be captured by the naked eye, particularly when the grader is biased to look for specific signs and to expect specific behaviors.”

The researchers suggest combining clinical observations with data from wearable biosensors, such as smartwatches, smartphones and other off-the-shelf technology.
By doing so, they argue, researchers may make data collection less invasive, lower the rate of false positives by using empirically derived statistics rather than assumed models, shorten the time to diagnosis, and make diagnoses more reliable, and more objective for all clinicians.

Torres said autism researchers should aim for tests that capture the accelerated rate of change of neurodevelopment to help develop treatments that slow down the aging of the nervous system.

“Autism affects one out of 34 children in New Jersey,” she said. “Reliance on observational tests that do not tackle the neurological conditions of the child from an early age could be dangerous. Clinical tests score a child based on expected aspects of behaviors. These data are useful, but subtle, spontaneous aspects of natural behaviors, which are more variable and less predictable, remain hidden. These hidden aspects of behavior may hold important keys for personalized treatments, like protecting nerve cells against damage, or impairment, which could delay or altogether stop progression.”

The study was co-authored by Richa Rai, a graduate student in psychology at Rutgers University, Sejal Mistry, a former Rutgers Biomathematics student now at the University of Utah Medical School, and Brenda Gupta from Montclair State University.

Iowa Caucuses

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."

But the Iowa caucuses, the first event in the presidential nomination season, create barriers for people with autism and other disabilities.

Maggie Astor at NYT:

Talk to Iowans with disabilities and you will hear the same story over and over: a nightmarish experience in 2016, and repeated pleas that bring only vague assurances that 2020 will be better.

The state Democratic and Republican Parties say they have worked hard to make it so. The Democrats have an online form for people to request accommodations by Monday; the Republicans list a phone number, an email address and a Friday deadline. But they have publicized the processes perfunctorily if at all.

The Democrats released their form just this month, with a tweet saying they were “excited to announce” that they were offering an accommodation request process “for the first time ever.” Asked whether the Republicans had advertised theirs, a spokesman, Aaron Britt, put the onus on advocates.

“The disabilities groups are really good about making sure they get out our process,” he said. “If an Iowan has a disability but they want to be able to caucus, it’s pretty easy for them to find out what exactly they need to do.”

Yet in a state where some 300,000 registered voters have disabilities, the Republicans had received one accommodation request as of Friday, according to Mr. Britt. Ms. Koski said the Democrats had received about 160. Some additional requests have gone to local officials: Judy Downs, the executive director of the Polk County Democrats, estimated that she had fielded two dozen.

Caucusgoers said they had struggled to navigate the request processes, or hadn’t known they existed until recent days. Even those seeking simple accommodations — a chair, for instance — described a mass of red tape and unreturned calls.

Although this article does not mention autism, caucuses can be extremely stressful for many people on the spectrum.   They can be noisy, crowded, chaotic, and they require intense social interactions with strangers.

Ohio Bureau of Motor Vehicles Database

In The Politics of Autism, I discuss interactions between police and autistic people.  Sometimes they occur on the road.  A number of ASD people drive cars.  Some states have actual or proposed programs  for voluntary identification.

A release from the Ohio Department of Public Safety:

Opportunities for Ohioans with Disabilities (OOD) and the Ohio Bureau of Motor Vehicles (BMV), a division of the Ohio Department of Public Safety (ODPS), released an awareness video today explaining how individuals with a diagnosed communication disability can voluntarily enroll in a database to inform law enforcement of their communication disability.

Any individual with a medically diagnosed communication disability who drives or regularly has someone with a medically diagnosed communication disability in their vehicle, can voluntarily enroll in a database that connects to the Law Enforcement Agencies Data System (LEADS). The law enforcement officer is then aware that the driver or a person in the vehicle may have difficulty communicating and can approach the vehicle with awareness to help avoid a situation that could become harmful to either the individual with a communication disability or to the officer.

“Since taking office last year, I’ve made clear my commitment to establishing Ohio as a Disability Inclusion State and Model Employer of Individuals with Disabilities,” said Ohio Governor Mike DeWine. “This is a way to better include individuals with communication disabilities.”

Individuals interested can take a verification form to a physician, psychiatrist or psychologist to validate a communication disability. Completed forms should be submitted to the BMV.

“We want everyone to know about this Ohio law and how it supports the safety of people in our community who have challenges communicating,” said Lt. Governor Jon Husted. “This is a great way to boost understanding, but we need participation to make it happen.”

"This has been a game changer for individuals with communication disabilities,” said Kevin Miller, Director of OOD. “By opting in, a communication disability is flagged for law enforcement, but exact disabilities (e.g., deaf, hard of hearing, cerebral palsy, autism spectrum disorder) remain private.”

“Being able to obtain information about an individual with a communication disability is an invaluable resource for Ohio law enforcement,” said Tom Stickrath, Director of ODPS. “This allows for improved communication which in turn creates trust, community stability, and officer safety.”

The video, additional information about the Communication Disability Law, and additional quotes of support are available at

https://ood.ohio.gov/Information/Communication-Disability-Law.
OOD is the state agency responsible for empowering Ohioans with disabilities through employment, disability determinations, and independence.

Teacher Prep

 In The Politics of Autism, I write about education and laws that affect students with disabilities, such as the Individuals with Disabilities Education Act.

Vasilisa Smith at The Center for American Progress:

Roughly 7 million students in the K-12 public school system—14 percent—are identified as students with disabilities. Of these, more than 62 percent spend a large majority of their day in general education classrooms. Given the numbers, it is clear that general education teachers should possess the tools necessary to help students with disabilities succeed. Teacher preparation programs can be a powerful and critical lever for ensuring this support; however, most teacher preparation programs do not center students with disabilities in their curriculum for general education teachers.

Struggling with Special Education Costs

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

Corey Mitchell at Education Week:

In recent weeks, several stories have revealed the ways in which districts struggle with special education costs. Here are a few:

In Connecticut, the Waterbury Republican-American reports that the 4,000-student Torrington school system ordered a districtwide budget freeze because of an unexpected increase in special education enrollment.

In Michigan, mlive.com reports that Flint residents are demanding more special education funding. Special education costs in the 3,800-student district have spiked as the city deals with the fallout from its crisis with lead in the drinking water. In August, we wrote about how "at least 1 in 5 students in Flint's public schools are eligible for special education—and the school system is buckling under the weight of federal requirements and costs for providing programs and services."

In Wisconsin, The Press Times reports that the Green Bay schools plan to cap open enrollment for special education students because of concerns about extra costs the district could incur. While the 20,000-student school system could be shutting its doors to more outside special education enrollment, administrators there will accept all open enrollment applications for general education students. Wisconsin state law allows districts to make separate decisions on open enrollment for special education and general education students based on a state formula that factors in staffing and capacity.

First Responders and Autistic People

In The Politics of Autism, I discuss interactions between first responders and autistic people. 

Heather Jordan at MLive:

A local initiative to provide first responders with autism sensory kits designed to soothe children with autism spectrum disorder and other special needs during emergency situations is growing.

Last month, emergency personnel with five Saginaw-area departments received the new “Carter Kits” during a press conference at Saginaw Fire Department Station No. 1, 801 Federal Ave. The event was attended by 5-year-old Carter Severs, who has autism spectrum disorder and for whom the kits are named, his parents, Justin Severs, a Saginaw Township police detective, and Kelley Severs, their friend Andrew Keller, an area Realtor who donated the first 10 kits, Saginaw firefighter Brandon Hausbeck, and others involved in the effort.

Carter Kits contain noise-canceling ear muffs, sunglasses, a weighted blanket, sensory toys and fidget devices. Now, thanks to a donation of more than $10,000 from the 100+ Women Who care-Mid Michigan membership, the program is expanding, Keller said. The donation will fund 200 to 250 more kits for use locally, according to a post on the Carter Kits - Autism Sensory Bags Facebook page.

Alfred Branch at Darien Patch:

Members of the Darien Police Department are now looking for the "Blue Envelope" when they pull over motorists during traffic stops. The special envelopes are part of a statewide program, supported by the Connecticut Police Chief's Association, Department of Motor Vehicles, and Autism Advocacy groups, that seeks to improve interactions between police officers and people on the autism spectrum.

"Traffic stops can be stressful for anyone, but are exceptionally so for those identified as autistic," said Darien police officials in a statement. "To help improve the encounter, participants will keep their vehicle information in the new blue colored envelope. When the individual is pulled over and retrieves their registration at an officer's request, it will be immediately apparent to the officer that the individual is on the autism spectrum."

The blue envelope is a clear indication to the officer that the individual may not react in a way that he or she is used to, which has the potential for miscommunication, according to officials. It also allows for the individual to have some idea of what may happen during the stop, as uncertainty is a particular challenge for those with autism. On the envelope are tips for both the driver and officer on how best to navigate a traffic stop.

RI Study: Gender Differences, Co-Occurring Conditions

In The Politics of Autism, I discuss gender differences and co-occurring conditions.

A release from Brown University:

A new study analyzing the first 1,000 participants in the Rhode Island Consortium for Autism Research and Treatment (RI-CART) identifies key trends in the presentation and diagnosis of autism spectrum disorder. The study was published in Autism Research on Monday, Jan. 20.

The first finding was that girls with autism receive a diagnosis, on average, nearly 1.5 years later than boys. This is likely because parents and clinicians tend to notice language delays as the first sign of autism, and girls in the study exhibited more advanced language abilities compared to boys, said study authors Stephen Sheinkopf and Dr. Eric Morrow.

Autism is far more common in boys. The RI-CART study found more than four times as many boys as girls with autism; however, given the large size of the sample, the study was well-powered to evaluate girls with autism. The finding that girls with autism are diagnosed later is clinically important, said Morrow, an associate professor of molecular biology, neuroscience and psychiatry at Brown University.

"The major treatment that has some efficacy in autism is early diagnosis and getting the children into intensive services, including behavioral therapy," Morrow said. "So if we're identifying girls later, that may delay their treatments."

...
 The other major finding of the study was that people with autism frequently exhibit co-occurring psychiatric and medical conditions.

Nearly half of the participants reported another neurodevelopmental disorder (i.e., attention-deficit/hyperactivity disorder (ADHD) or intellectual disability), while 44.1 percent reported a psychiatric disorder, 42.7 percent reported a neurological condition (i.e., seizures/epilepsy, migraines, tics), 92.5 percent reported at least one general medical condition and nearly a third reported other behavioral problems.

The Department of Defense and Autism

In The Politics of Autism, I discuss federal spending for people with autism and other disabilities. 

From the Pentagon's Autism Research Program:

It is estimated that 1 in 59 children are diagnosed with Autism Spectrum Disorder (ASD), with over 3.5 million (M) Americans living with this developmental disorder. The Department of Defense Autism Research Program (ARP) was established in 2007 to improve the lives of individuals with ASD by funding innovative, highly impactful research. Since its inception, the ARP has received $81.9M in Congressional
appropriations. The appropriation for the ARP for fiscal year 2018 (FY18) is $7.5M. Through the program’s Areas of Interest, the ARP focuses on ways to improve diagnosis, treatment, and study of the psychosocial factors that affect key lifetime transitions to independence and a better quality of life for those with ASD and their families. To date, the ARP has funded 152 research awards, resulting in over 230 peer-reviewed publications and 20 patent applications.

A December 24 release:

The FY20 Defense Appropriation provides $15 million (M) to the Department of Defense Autism Research Program (ARP) to provide support for research of exceptional scientific merit and innovation with high impact that focuses on autism spectrum disorders (ASD). As directed by the Office of the Assistant Secretary of Defense for Health Affairs, the Defense Health Agency J9, Research and Development Directorate, manages the Defense Health Program’s Research, Development, Test, and Evaluation (RDT&E) appropriation. The managing agent for the anticipated Program Announcements/Funding Opportunities is the Congressionally Directed Medical Research Programs (CDMRP) at the U.S. Army Medical Research and Development Command (USAMRDC).

Data:

Congressional Appropriations

• $81.9 million
  FY07-18
• $7.5 million
  FY19

Funding
Summary

• 160 Awards in
  FY07-18
• Recent Applications Recommended for Funding

Programmatic
Panels

• FY20 Programmatic
  Panel
• Previous Years' Programmatic
  Panels

Peer Review Participants

• FY19 Peer Review Participants
• Previous Years' Peer Review Participants

Transition Planning, Implementation, and Outcomes

In The Politics of Autism, I write:

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.

Claire Snell-Rood and colleagues have an article at Autism titled "Stakeholder Perspectives on Transition Planning, Implementation, and Outcomes for Students with Autism Spectrum Disorder."  The abstract:

Little is known about factors impacting poor post-school outcomes for transition-age students with autism spectrum disorder. Guided by the Exploration, Preparation, Implementation, and Sustainment implementation science framework, we sought to better understand the interdependent impacts of policy, organizational, provider, and individual factors that shape the transition planning process in schools, and the subsequent process through which transition plans are implemented as youth access services and gain employment after school. We conducted focus groups with individuals with autism spectrum disorder, parents, classroom teachers, school administrators, adult service providers, and state policymakers (10 groups, N = 40). Participants described how core tenets of the individualized education planning process were not reliably implemented: planning was characterized by inappropriate goal-setting, ineffective communication, and inadequate involvement of all decision-makers needed to inform planning. After school, youth struggled to access the services stipulated in their transition plans due to inadequate planning, overburdened services, and insufficient accountability for adult service providers. Finally, a failure to include appropriate skill-building and insufficient interagency and community relationships limited efforts to gain and maintain employment. Diverse stakeholder perspectives illuminate the need for implementation efforts to target the provider, organizational, and policy levels to improve transition outcomes for individuals with autism spectrum disorder.

Service fragmentation is a big problem. From the article:

Respondents noted that schools were good at setting the goals, but implementation was often the challenge, commented one parent: “I was looking [at the goals] and I was like ‘Wow, these are great IEP objectives. If only they would have done them!’” At present, schools are not accountable to reach the IEP goals— leading some school administrators and policymakers to wonder if a standard of measurement could influence the planning process. In addition, many parents and policymakers hoped for resources that could provide a map of the options available to young adults with ASD that would “guide you through the next ten years.” Such a resource could inform parents and individuals to be better prepared before IEP meetings, and could also enable networking and advocacy among families.

As outlined by EPIS, an EBP [evidence-based practice] requires identification and involvement of the key critical players acting conjointly within a set of interdisciplinary collaborative relationships to provide effective services. In contrast, as noted consistently by several participants above, transition planning lacked an inter-organizational structure to support and sustain collaborative planning and implementation of services. Key players tended to operate within separate and usually different organizational policies, goals, and priorities that supported their unique mandates (employment, academic achievement) with no clear process for creating and sustaining the kind of integrative planning and goals needed for successful transition.

Antivaxxers Harass Pediatrician

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. Measles can kill.

Too often, antivaxxers have resorted to bullying and harassment.

Erin Glynn at the Cincinnati Enquirer:

Nicole Baldwin, a pediatrician working in suburban Cincinnati, posted a TIkTok video encouraging vaccination on Twitter Saturday evening [Jan 11].

It took less than 24 hours for the video to go viral on both TikTok, a video sharing app, and Twitter – and just another 48 hours before Baldwin was facing backlash from hundreds of thousands of people associated with the anti-vaccine movement.

The video shows Baldwin dancing to "Cupid Shuffle" and pointing to diseases that vaccines prevent. It ends with her pointing to the words "Vaccines don't cause autism."

... 

Commenters across Baldwin’s social media platforms insulted her, referred to vaccines as “poison” and suggested Baldwin was being paid to promote vaccination. One commenter wrote, “Dead doctors don’t lie.” People then flocked to her Yelp and Google Review pages, leaving one-star reviews in an attempt to sabotage Baldwin’s ratings.

...
By Tuesday, people started calling Baldwin’s practice and harassing the staff. When a woman called on Wednesday threatening to “shut the practice down,” the office had to call the police. Deerfield Township police, where Baldwin has a satellite office, said they're investigating.  

Baldwin reached out to Todd Wolynn, a colleague she had met a couple of months earlier at an event in Columbus and CEO of a pediatric practice in Pittsburgh. Wolynn had dealt with his own intense online backlash from the anti-vaccine movement two years prior and started the organization Shots Heard Round the World as a result.

Testing Balovaptan

In The Politics of Autism, I discuss treatments, including medication.

At City News in Toronto, Faiza Amin reports:

Drug manufacturer Hoffmann-La Roche has commissioned an international research study for Balovaptan, a drug that could potentially help people on the spectrum manage everyday social and communication challenges better.

“It’s regulating hormones in our brain that have to do with how we perceive the social world, whether we understand social cues, how we relate to other people, and how we develop close bonds and relationships,” said Dr. Evdokia Anagnostou, the study’s lead researcher at Toronto’s Holland-Bloorview Kids Rehabilitation Hospital.
...
The Autism community remains divided on the drug, as one disability rights group in Ontario has raised concerns around whether or not the pill is ethical.

Autistics 4 Autistics Ontario (A4A) is a self-advocacy group for adults with autism, calling for reform to autism funding and services at the federal and provincial levels. Anne Borden, a member of the province’s A4A executive board, tells CityNews the organization opposes the drug and the research, saying it could prey upon people’s hopes and dreams.

“Who is this benefiting?” Borden asks. “This kind of research represents a very old way of approaching autism, looking at autistic people like they’re a problem to be solved or sort of a broken version of normal, rather than taking a position of acceptance.”

Borden said developing a pill for this purpose speaks to the dignity of people with autism, and can negatively affect how they are treated and perceived. She called this a “profit-generating” pill that may put “people from a vulnerable population” at risk, adding that there are ethical questions rooted in its very existence.

“There’s a deep psychological impact when all the people in your life are constantly trying to fix you for who you are and, in this case, gives you a pill to make you act differently,” Borden said.

“It’s not looking at communication as a two-way street. Whereas other ideas like inclusion, accessibility, communication, dialogue, and research into the access needs of autistic people will do that.”

Lawmakers Urge End to Dangerous 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 release from Rep. Sean Casten (D-Illinois):

U.S. Representative Sean Casten (D-IL-06), along with U.S. Senators Dick Durbin (D-IL) and Tammy Duckworth (D-IL), led a letter to U.S. Secretary of Education Betsy DeVos, asking the Department to issue federal guidance banning public schools’ use of seclusion and restraint practices that restrict student’s breathing and create other life-threatening conditions.

This letter follows a November 2019 joint report by the Chicago Tribune and ProPublica Illinois that revealed that in Illinois alone, there were over 20,000 seclusions from August 2017 to December 2018. The same report also found that hundreds of these seclusions involved children in first grade or younger and disproportionately involved children with disabilities. This prompted the Illinois State Board of Education to issue an emergency rule to ban these practices. However, only four other states have taken similar action, leaving millions of children still at risk.

The letter said in part, “We are gravely concerned by harmful student seclusion and restraint practices occurring in schools around our country…The use of seclusion and dangerous restraints is putting the psychological well-being and lives of children at risk every day and must be addressed at the federal level immediately. We respectfully urge you to update the Department of Education’s 2016 guidance to ban seclusion, ban restraints that restrict breathing and are life-threatening, and promote evidence-based alternatives to reduce the use of physical restraint.”

The letter was also signed by U.S. Representatives Jan Schakowsky (D-IL-09), Mike Quigley (D-IL-05), Danny K. Davis (D-IL-07), Cheri Bustos (D-IL-17), Brad Schneider (D-IL-10), Bill Foster (D-IL-11), Raja Krishnamoorthi (D-IL-08), Jesus “Chuy” Garcia (D-IL-04), and Ayanna Pressley (D-MA-07)

Read the full letter below or click here.

January 15, 2020
The Honorable Betsy DeVos
Secretary
U.S. Department of Education
400 Maryland Avenue SW
Washington, DC 20202

Dear Secretary DeVos:

We are gravely concerned by harmful student seclusion and restraint practices occurring in schools around our country. We respectfully urge you to update your federal guidance banning seclusion, banning restraints that restrict breathing and are life-threatening, and promoting evidence-based, positive behavior strategies and de-escalation techniques to reduce the use of physical restraint.

According to a November 2019 report by the Chicago Tribune and ProPublica IL, children as young as five, disproportionately children with disabilities, are being locked alone in empty rooms for behavioral concerns or to “calm down” after misbehavior. In reality, the rooms have the opposite effect: children throw themselves at the door and scratch at the windows trying to escape. Some are recorded as urinating on themselves, undressing, attempting to commit suicide, or crying out that they want to die. Tragically, in some states, children have died in seclusion rooms.

In Illinois alone, 20,000 such seclusions were reported from August 2017 to December 2018, hundreds of which involved children in first grade or younger, according to the November Tribune article. Not only does this practice cause students to miss valuable classroom time—some are secluded for hours on end—it can also cause serious physical and psychological trauma. A December Tribune and ProPublica IL follow-up article found that restraints—including restraints that can restrict breathing—were being used even when students and staff were not in physical danger, in violation of Illinois law.

We were relieved that, following the publication of the November report, the Illinois State Board of Education (ISBE) responded swiftly to ban seclusion in schools across the state. However, that makes Illinois only the fifth state to ban seclusion. There are tens of millions of American children still at risk of experiencing this detrimental practice.

The use of seclusion and dangerous restraints are putting the psychological well-being and lives of children at risk every day and must be addressed at the federal level immediately. We respectfully urge you to update the Department of Education’s 2016 guidance to ban seclusion, ban restraints that restrict breathing and are life-threatening, and promote evidence-based alternatives to reduce the use of physical restraint.

We appreciate your prompt attention to this matter.

How Antivaxxers Won in New Jersey

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. Measles can kill.

 Tracey Tully, Sharon Otterman and Jan Hoffman at NYT tell how antivaxxers blocked a bill to end religious exemptions from school immunization requirements.

An influential ultra-Orthodox Jewish organization that had remained largely silent as the New York bill was being debated deliberately pivoted, opting to vocally oppose the New Jersey legislation on grounds of religious freedom.

Grass-root parent groups successfully leveraged social media and conservative talk radio in their effort to convince most Republican leaders to line up against the bill. A Facebook page named Occupy Trenton urged parents to converge at the State House. And, in the final week of debate, appearances by a Kennedy scion and a contrarian filmmaker helped fuel a libertarian argument that parents, not government, should control their children’s health care.

The intense protest left two Democratic senators with cold feet that no degree of political cajoling — or a private question-and-answer session for lawmakers with three pediatricians from the state chapter of the American Academy of Pediatrics — could thaw.

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The bill passed last month in the Assembly. But lawmakers who supported the legislation also may have made a political miscalculation when they introduced an amendment that excluded private schools to win the vote of a Republican needed to achieve a majority in the Senate. Instead, opponents, including an African-American Democratic assemblyman, argued that this amounted to segregation that would allow only the affluent a choice about vaccination.

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“Technology is a huge piece of it,” said Sue Collins, a founder of the New Jersey Coalition for Vaccine Choice. “Everybody has access to everybody, and they’re holding it in their hands all day long.”

The omnipresence of social media also gave opponents the ability to reach directly into lawmakers’ private lives.

Senator Richard J. Codey, a Democrat and a former New Jersey governor, said his son got calls at home. Francine Weinberg, a daughter of one of the bill’s sponsors who lives in California, said she had to adjust her Facebook page’s privacy settings to end the string of attacks from commenters.

“I call it the politics of harassment,” said Ms. Weinberg, whose mother, Senator Loretta Weinberg, was a primary sponsor of the legislation.

Antivaxxers Win in NJ, Create Doubt in National Public Opinion

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. Measles can kill.

Meg Oliver at CBS:

The vaccination debate rages on in New Jersey, after lawmakers there failed to pass a bill that would have eliminated religious exemptions for public school-required vaccinations. Thousands protested the bill at the state capitol on Monday.

Lisa DeRogatis said she never vaccinated her three children. "I feel like this is a fascist overreach of the government and taking away religious and medical freedoms," she said.

A new Gallup poll shows a 20-year drop in vaccine support among all age groups. The steepest ages are 30-49, at 12%. But 86% of Americans still support vaccines, and say they are not more dangerous than the diseases they prevent.

"We're seeing a decline because of a rise in anti-vaccine misinformation coupled with political activities," said Dr. Peter Hotez, an infectious disease specialist.

Five states have banned non-medical exemptions only, including New York, which eliminated its religious exemption last year after outbreaks that started in 2018. To maintain what's called "herd immunity," public health officials say vaccine rates need to stay above 90% to protect those who can't be vaccinated, including babies and those with compromised immune systems.

R.J. Reinhart at Gallup:

Perhaps the most well-publicized and debunked claim of danger posed by vaccines is that they cause autism. Currently, 10% of U.S. adults believe vaccines cause autism in children, marking a modest increase from 6% in 2015. Nearly half, 45% do not think vaccines cause autism, up modestly from the 41% who said the same almost five years ago. And 46%, down from 52%, say they are unsure.

The more advanced an American's formal education, the more likely they are to say vaccines do not cause autism. The figure is 73% among those with postgraduate education, falling to 61% among those with a college degree only, 42% of those with some college and 28% of those with no college experience. Importantly, lesser-educated Americans are much more likely to have no opinion than to say they believe vaccines do cause autism. The percentage making the causal connection tops out at 12% among Americans with no college education, versus 5% of postgraduates.

There are also substantial partisan differences, with 55% of Democrats saying vaccines do not cause autism, compared with 37% of Republicans.