National Training for Police and Mental Health Crisis Support

In The Politics of Autism, I discuss interactions between police and autistic people.  Police officers need training to respond appropriately.  When they do not -- as recent events have shown -- things get out of hand. 

From the Autism Society:

Senator Bob Casey (D-PA) and Senator Jerry Moran (R-KA) reintroduced the bipartisan Law Enforcement Education and Accountability for People with Disabilities (LEAD) Initiative. This legislation will help bring about racial justice and address the high incidence rate of police violence involving people with autism and other disabilities. The LEAD Initiative consists of two bills – the Safe Interactions Act (SIA) and the Human-services Emergency Logistic Program (HELP) Act. These two bills are also introduced in the House. Representative Anna Eshoo (D-CA) introduced the HELP Act and Representatives Susan Wild (D-PA) and Brian Fitzpatrick (R-PA) introduced the SIA Act.

From Senator Casey:

The HELP Act is a proposal to connect people in communities with the human services they need while at the same time reducing the call and response burden on local and state law enforcement agencies. The Act would: 

• Divert non-criminal, non-fire and non-medical emergency calls from 9-1-1 systems to state and regional 2-1-1 systems. 
• Provide each state with funds to build out its 2-1-1 referral system to link callers to both emergency and long-term human services in order to address their needs. Special emphasis would be placed on responses for mental health emergencies, homelessness needs and other non-criminal emergencies.  In addition, the 2-1-1 system would be a robust resource and referral system capable of linking individuals and families to other human services needs such as food assistance and child care. 
•  Create an oversight system for the 2-1-1 networks comprised of community members who represent older adults, people with disabilities, ethnic and racial community members and members of other communities. Each system would be evaluated every year and recommendations to improve services would be made public.

Also from Senator Casey:

The Safe Interactions Act provides grants to enable nonprofit disability organizations to form partnerships with a law enforcement agency or agencies, to develop training programs that support the safe interactions between law enforcement officers and people with diverse disabilities by increasing the understanding of different disability types among new and veteran law enforcement officers. Preference will be given to applicants with partnerships that will train law enforcement officers in rural communities and include racial and ethnic minorities and black, indigenous, people of color in the trainings.The Act would require: 

• Partnerships between a nonprofit disability organization and law enforcement agencies. • Inclusion of self-advocates in the development and implementation of trainings, including a diverse group of disability types such as intellectual and developmental disabilities, mental health disabilities, and sensory and/or physical disabilities.
• A minimum of eight hours of training for new law enforcement officers, including four hours of interactive sessions led by trainers with disabilities, and at least four hours of training every year for existing law enforcement officers.
• The establishment of an advisory council, chaired by a person with a disability, to oversee the training program development and implementation

The Keeping All Students Safe Act

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.

From the Autism Society:

The Keeping All Students Safe Act (KASSA) has been introduced in both the House and Senate by Representatives Bobby Scott (D-VA), Don Beyer (D-VA), and Donald McEachin (D-VA), and Senators Chris Murphy (D-CT) and Patty Murray (D-WA). This bill would make it illegal for any school that receives federal funds to seclude a child or use dangerous restraint practices that restrict breathing, such as prone or supine restraint. KASSA would also prohibit schools from physically restraining children, except when imminent danger of serious injury to students or staff is likely. The bill would also ensure training is provided to all school personnel that is based on evidence-based proactive strategies. This harmful restraint and seclusion practices disproportionately affect students with autism and other disabilities, and/or students of color. According to the 2018 Civil Rights Data Collection, of the students restrained or secluded, 78 percent were students with disabilities. Although Black students comprise 15 percent of the student population, they represent 22 percent of students subjected to seclusion and 34 percent of students subjected to mechanical restraint.

Students with disabilities deserve the opportunity to pursue their education free from the fear of trauma and abuse. Please use this action alert to encourage your members of Congress to pass this important piece of legislation.

More here. 

An Encounter in Glynn County, Georgia

In The Politics of Autism, I discuss interactions between police and autistic people.  Police officers and other first responders need training to respond appropriately.  When they do not, things get out of hand.   Unfortunately, there is practically no research on best practices for training programs.

 At WJXT-TV, Anne Maxwell reports:

Body camera footage released Tuesday shows Glynn County police tasing a man with autism who is nonverbal at least six times.

Police said officers were called around 8:30 Saturday night about a man walking in traffic. Callers said the man was carrying a weapon, screaming and hitting himself in the head near the Dollar General store on Stafford Avenue in Brunswick.

A spokesperson said the responding deputies didn’t know the man had autism when they arrived, but even after the man had dropped the metal object in his hand and people in the area shouted about his mental health condition, deputies continued to use force when he ignored calls to get on the ground.

CAUTION: The full video can be viewed here, but some might find the contents disturbing

If you want to develop an effective autism training, ask autistic students to help you

 In The Politics of Autism, I discuss the growing number of college students on the spectrum. 

Kristen Gillespie-Lynch and colleagues have an article at Autism titled "If you want to develop an effective autism training, ask autistic students to help you." The abstract:

Autistic university students are often left out because people do not understand autism. We wanted to help people understand autism. Most autism trainings are not made by autistic people. Autistic people know what it is like to be autistic. So autistic people may be the best teachers when it comes to teaching about autism. Autistic students and non-autistic professors made an autism training. The students made videos for the training. They also helped make questions to see what people learned from the trainings. Professors who are not autistic made a training on their own. Students in New York City tried out the trainings. After they answered questions, they did either the training the autistic students helped make or the training made by only professors. Then, they answered questions again. We learned from the students how to make our trainings better. Then, students from two universities in the United States and one university in Lebanon did our trainings and questions. Both trainings made hidden feelings about autism better. The training autistic students helped make taught students more than the training professors made on their own. The autistic-led training also helped students accept autism more. These studies show that autistic students can make autism research and trainings better. At the end of this article, autistic students share their ideas for how to make autism trainings even better in the future.

From the article:

Autistic co-authors indicated that their experiences contributing to the development and/or evaluation of the participatory training gave them self-confidence and helped them advocate for themselves and others, particularly people who are diverse in multiple ways, such as autistic women and non-speaking people. They enjoyed learning how participants initially thought about autism and how their viewpoints expanded with training to appreciate the diversity of the autism constellation. An autistic collaborator wrote,

 Developing this participatory training for my capstone was an experience that felt quite personal to me, as I felt as though I was helping a new generation of autistic students be okay with being themselves. Whatever I can do to improve the conditions for people on the spectrum in the future, I will do, and this was an important part of that.

Irish Woman Nails Autism-Cure Scammer

In The Politics of Autism, I discuss autism quackery.  One particularly dangerous "cure" involves bleach.  Lately, the quacks hawking a bleach solution have rebranded it as a cure for coronavirus.

John Hand at Irish Mirror:

A man has been arrested in the US after an Irish woman alerted police that he was making and selling a bogus Covid-19 treatment.

Activist Fiona O’Leary informed cops in Las Vegas, Nevada, who lifted Elias Daniel Beltran Suarez over his scam on Monday.

Officials said his product posed “significant risks to patient health” after uncovering his makeshift chemical lab to create his bleaching agent treatment.

He claimed it could cure autism, cancer and Covid-19.

He is now facing the charge of acting as a medical practitioner without a licence.

Glenn Puit at The Las Vegas Review-Journal:

Police said the Las Vegas investigation started when an online sleuth who described herself as “a campaigner against dangerous pseudoscience” came across Suarez on the online portal Telegram under a group user name Comusav.com. The woman identified herself to the Las Vegas Review-Journal on Tuesday as Fiona O’Leary of Cork, Ireland.

In a phone interview, O’Leary said she has three children who have autism, and she learned years ago that chlorine dioxide was being peddled by fake doctors and pseudo-scientists to desperate parents of autistic children. She referred to the sellers of chlorine dioxide as “bleachers” who engage in “dangerous quackery.”

“Someone reached out to me telling me they were giving bleach to autistic children,” O’Leary said. “I thought they were mad.”

O’Leary said chlorine dioxide also is sold as a cure for cancer. She said she works tirelessly to out those who sell chlorine dioxide and report them to law enforcement. She said the treatment is especially popular in Latin America.

Controversy Over a DNA Study

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.

Liam O'Dell at The Independent:

Autistic advocates have expressed concerns over a University of Cambridge study, over fears that the research into “genetic and environmental factors that contribute to the wellbeing of autistic individuals and their families” amounts to “eugenics”.

Branded “the largest study of autism in the UK”, Spectrum 10K – which also involves researchers from the Wellcome Sanger Institute and the University of California Los Angeles (UCLA) – looks to collect questionnaire responses and DNA samples from 10,000 autistic people.

Professor Simon Baron-Cohen, director of Cambridge’s Autism Research Centre and project leader, said there is an “urgent need” to “better understand” the needs of autistic people.

...

However, while the team behind Spectrum 10K repeatedly insist that they are “not searching for a cure” for the condition and that they are “ethically opposed to any form of eugenics”, concerns have been raised over the security of genetic information and the views of those involved.

Speaking in April 2019, Baron-Cohen told Spectrum News that “there’s no way we can ever say that a future political leader or a scientist won’t use the research for eugenics”.

The "eugenics" fear is that if DNA testing shows that a couple with a high probability of having an autistic child, they will decide not to have children at all.  And more specifically, there is concern that it could lead to selective abortion

How an Antivaxxer Changed His Mind

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.

Antivaxxers are sometimes violent, often abusive, and always wrong.  

Craig Idlebrook at STAT:

My daughter was born during the height of the hysteria over a now-debunked theory linking immunizations and a rise in autism. I convinced myself that the best thing for my daughter was not to be vaccinated, employing a kind of bizarro logic to “protect” her against the only thing that would truly protect her from potentially horrific illness.

Once I took such a drastic and dangerous step, I became relatively impervious to doubt. I had the education to understand the scientific method, access to good medical research that proved the vaccines were very safe and effective, and plenty of peer pressure from doctors and family members to vaccinate. Yet I still held fast to my anti-vax beliefs. It was like a religion, and to doubt that vaccines were dangerous was to admit to myself I had made a horrible mistake that put my daughter’s life at risk. The stakes were too high to be wrong.

I wish I could say I had a scientific epiphany, one that could be replicated with other anti-vaxxers, but it was a slow and personal journey sparked by a divorce that caused me to reevaluate every aspect of my life. As I went through this process, I had the good fortune of being supported by people who patiently urged me to reevaluate my stance against vaccines. I was also lucky enough to fall into a job as an editor for several diabetes publications, which taught me about every aspect of the Food and Drug Administration’s process for approving new treatments.

 My daughter eventually got her shots, my son was immunized on schedule, and when the Covid-19 vaccine was given emergency authorization, I rushed to get it.

 I now try to advocate online for vaccination, especially for the Covid-19 vaccine. It hasn’t always been pleasant. I’ve received messages that tell me to keep my politics out of the diabetes forum, or to do anatomically impossible things to myself.

Special Education Legislative Advocacy

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

Meghan Burke, Zachary Rossetti & Chak Li have an article at The Journal of Autism and Developmental Disorders titled "The Efficacy and Impact of a Special Education Legislative Advocacy Program Among Parents of Children with Disabilities."  The abstract:

With the looming reauthorization of the Individuals with Disabilities Education Act (IDEA), it is important for parent input to inform legislative changes. Unfortunately, parent input has been limited in past IDEA reauthorizations. Thus, it is critical to develop and test interventions to improve parent legislative advocacy. With 37 parents of children with disabilities, we conducted a randomized controlled trial to determine the efficacy and impact of an advocacy program. Results indicate significant increases in special education knowledge and special education legislative advocacy activities for the intervention (versus waitlist-control) group. However, there were no significant changes in civic engagement. Implications for research and practice are discussed.

From the article:

First, participants demonstrated significant increases in special education knowledge and legislative advocacy activities. Regarding special education knowledge, these results are consistent with prior studies showing that parent advocacy programs increase participants’ special education knowledge (Burke & Sandman, 2017; Burke et al., 2016). Notably, this study was the frst to do so with an RCT. Knowledge of special education policy refects a strong foundation for potential legislative advocacy as prior studies indicate that parents report insufcient knowledge as a barrier to legislative advocacy (Burke et al., 2018; Trainor, 2010). Regarding special education legislative activities, our results are consistent with prior research showing that an advocacy program increased legislative advocacy activities (Burke & Sandman, 2017). Again, the current study was the frst to do so with an RCT. Prior research has shown that parents of children with disabilities perceived legislative advocacy as less efective than individual advocacy for their own child (Wright & Taylor, 2014). Our results suggest the efcacy of a legislative advocacy programs, which may help enable parents in overcoming barriers to advocacy.

Second, the program did have a signifcant impact on legislative advocacy activities. In addition, intervention group participants specifcally engaged in advocacy that reached over 300 individuals. This is consistent with prior research demonstrating that advocacy programs resulted in increased engagement in legislative advocacy (Burke & Sandman, 2017). With a shorter 3-month follow-up period of legislative advocacy activities compared to a 6-month follow-up in the pilot study (Burke & Sandman, 2017), this study’s results show a more immediate impact. Additionally, participants provided written responses describing other advocacy activities, such as fundraising and volunteering for important causes, belonging to school or disability committees and parent special education advocacy groups, and soliciting media involvement for important causes. These data refect types of engagement in legislative advocacy that may be more desirable and/or possible for parents compared to directly contacting or meeting with legislators, which they engaged in less and may seem intimidating (Burke & Sandman, 2017)

Antivax Playbook

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.

Antivaxxers are sometimes violent, often abusive, and always wrong.  

Tara Haelle at NYT:

Renée DiResta, a researcher at Stanford, found through Twitter analysis that there was “an evolution in messaging.” The movement discovered that a focus on freedom “was more resonant with legislators and would help them actually achieve their political goals,” Ms. DiResta said to me. Anti-vaccine Twitter accounts that had been posting for years about autism and toxins pivoted to Tea Party-esque ideas, leading to the emergence of a new cluster of accounts focused on “vaccine choice” messaging, Ms. DiResta said.

...

 At the anti-vaccine Health Freedom Summit in 2020, several anti-vaccine activists spoke. Jennifer Larson, who believes vaccination caused her child’s autism, described how she had worked to gain the trust of Minnesota legislators. She and another vaccine opponent, Mark Blaxill, had formed a political party in 2011 to run candidates who oppose vaccine mandates and “medical injury,” but the two-party system was too entrenched. So they pivoted to supporting major-party politicians who would champion their causes.

“If they say something that might be considered controversial, we have a community of people who will run to have their back and support them,” Ms. Larson said at the gathering. “If you can, get involved … Get to know them, get them to trust you.”

That became the anti-vaccine playbook across the nation. And in state after state, vaccine opponents have gradually leveraged their state and local Republican parties to their ends, riding the “freedom” wave that has become so central to party messaging today. Hence the seamless marriage between anti-vaccine activists and groups protesting mask mandates and lockdowns.

Right-Wing Politics, Supplements, and Autism

 In The Politics of Autism, I write:

The conventional wisdom is that any kind of treatment is likely to be less effective as the child gets older, so parents of autistic children usually believe that they are working against the clock. They will not be satisfied with the ambiguities surrounding ABA, nor will they want to wait for some future research finding that might slightly increase its effectiveness. They want results now. Because there are no scientifically-validated drugs for the core symptoms of autism, they look outside the boundaries of mainstream medicine and FDA approval. Studies have found that anywhere from 28 to 54 percent of autistic children receive “complementary and alternative medicine” (CAM), and these numbers probably understate CAM usage.

Specifically, they resort to nutritional supplements.of dubious value. 

People who make money from supplements also subsidize the antivax movement.

And the supplement connection may help explain the link between antivax activism and right wing politics.

Paul Krugman at NYT:

Right-wing extremists, and to some extent even more mainstream conservative media, rely on financial support from companies selling nutritional supplements and miracle cures — and that financial support is arguably a significant factor pushing the right to become more extreme. Indeed, right-wing extremism isn’t just an ideological movement that happens to get a lot of money from sellers of snake oil; some of its extremism can probably be seen not as a reflection of deep conviction, but as a way of promoting snake oil.

...

This is clearly true in the right’s fever swamps. Alex Jones of Infowars has built a following by pushing conspiracy theories, but he makes money by selling nutritional supplements.

It’s also true, however, for more mainstream, establishment parts of the right. For example, Ben Shapiro, considered an intellectual on the right, hawks supplements.

Look at who advertises on Tucker Carlson’s Fox News show. After Fox itself, the top advertisers are My Pillow, then three supplement companies.

Antivax Radio Hosts Die of COVID

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.

Antivaxxers are sometimes violent, often abusive, and always wrong.  

Daniel Politi at Slate:

Yet another conservative radio host who publicly spoke out against COVID-19 vaccines has died from the coronavirus. Marc Bernier, 65, a prominent conservative radio host from Daytona Beach, Florida, died Saturday after a nearly month-long battle with the virus. He is now the third conservative radio host to die from COVID-19 after publicly questioning the need for vaccines. Bernier wasn’t just a vaccine skeptic, he had even characterized himself as “Mr. Anti-Vax” at one point.

...

Benier died a week after Phil Valentine, a 62-year-old conservative radio host in Nashville, died of COVID-19. Valentine had expressed skepticism of the COVID-19 vaccine but reportedly changed his mind and urged friends and family members to get vaccinated from his hospital bed. Earlier, Dick Farrel, a 65-year-old conservative radio host from Florida, died of COVID-19 on Aug. 4. Farrel, who was also an anchor on Newsmax, frequently criticized vaccines on Facebook but his friends said he changed his stance on the issue after he was hospitalized. “COVID took one of my best friends! RIP Dick Farrel. He is the reason I took the shot. He texted me and told me to ‘Get it!’ He told me this virus is no joke and he said, ‘I wish I had gotten it!’ ” Amy Leigh Hair wrote on her Facebook page.

Education Dept to Probe Mask Mandate Bans

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. 

People with autism and other disabilities appear to be at higher risk from COVID.

 From the US Department of Education:

Today, the U.S. Department of Education's Office for Civil Rights (OCR) opened directed investigations in five states exploring whether statewide prohibitions on universal indoor masking discriminate against students with disabilities who are at heightened risk for severe illness from COVID-19 by preventing them from safely accessing in-person education.

"The Department has heard from parents from across the country – particularly parents of students with disabilities and with underlying medical conditions – about how state bans on universal indoor masking are putting their children at risk and preventing them from accessing in-person learning equally," said U.S. Secretary of Education Miguel Cardona. "It's simply unacceptable that state leaders are putting politics over the health and education of the students they took an oath to serve. The Department will fight to protect every student's right to access in-person learning safely and the rights of local educators to put in place policies that allow all students to return to the classroom full-time in-person safely this fall."

OCR sent letters today to the chief state school officers of Iowa, Oklahoma, South Carolina, Tennessee, and Utah, outlining how prohibitions of universal indoor masking prevent school districts from implementing health and safety policies that they determine are necessary to protect students from exposure to COVID-19, including those with underlying medical conditions related to their disability. OCR is concerned that state mask restrictions on schools and school districts "may be preventing schools…from meeting their legal obligations not to discriminate based on disability and from providing an equal educational opportunity to students with disabilities who are at heightened risk of severe illness from COVID-19," the letter states.

OCR has not opened investigations in Florida, Texas, Arkansas, or Arizona because those states' bans on universal indoor masking are not currently being enforced as a result of court orders or other state actions. Due to these rulings and actions, districts should be able to implement universal indoor masking in schools to protect the health and safety of their students and staff. However, the Department will continue to closely monitor those states and is prepared to take action if state leaders prevent local schools or districts from implementing universal indoor masking or if the current court decisions were to be reversed.

The investigations will explore each state's compliance with Section 504 of the Rehabilitation Act of 1973 (Section 504), which is a federal law that protects students with disabilities from discrimination based on their disability. Section 504 guarantees qualified students with disabilities the right to a free appropriate public education in elementary and secondary school, commonly referred to as FAPE. This includes the right of students with disabilities to receive their education in the regular educational environment, alongside their peers without disabilities, to the maximum extent appropriate to their needs.

The investigations will also explore whether statewide prohibitions on universal indoor masking violate Title II of the Americans with Disabilities Act of 1990, which prohibits disability discrimination by public entities, including public education systems and institutions. OCR's regional offices will begin collecting data from each state educational agency as part of the direct investigations over the coming weeks.

During the investigation, OCR is a neutral factfinder, collecting and analyzing relevant evidence from state education agencies and other sources as appropriate prior to reaching determinations in these matters. Opening a directed investigation does not imply that OCR has decided whether there has been a violation of a law that OCR enforces.

On Aug. 18, 2021, President Biden issued a Presidential Memorandum directing the Secretary of Education to "assess all available tools in taking action, as appropriate and consistent with applicable law" to ensure that governors and other officials are giving all students the opportunity to participate and remain in full-time, in-person learning safely, without compromising their health or the health of their families. In response to the President's call, Secretary Cardona laid out the steps the Department of Education can take to protect the rights of all students to access safe in-person learning equally, including using the enforcement authority of the Office for Civil Rights.

Secretary Cardona also sent letters earlier this month to each of the states that are the subject of the direct investigations that OCR announced today. The letters note that: "The safe return to in-person instruction requires that school districts be able to protect the health and safety of students and educators, and that families have confidence that their schools are doing everything possible to keep students healthy."

Fighting Bans on Mask Mandates

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. 

People with autism and other disabilities appear to be at higher risk from COVID.

 At USA Today, Alia Wong reports on mask mandate bans. She cites the example of Samantha Boevers and her son Porter, a 4-year-old with autism.

Yet Boevers and her family live in South Carolina – one of more than half a dozen states where schools are prohibited from requiring everyone on campus to mask up. Mask-wearing has been the exception rather than the rule in many of South Carolina’s school districts, and evidence suggests the trend has taken a toll. South Carolina has the third-highest rate of pediatric COVID-19 infections in the U.S., according to data collected by the American Academy of Pediatrics, with children accounting for roughly a fifth of the state’s positive cases.

With the help of the American Civil Liberties Union, Boevers and other parents and advocates recently filed suit in federal court challenging South Carolina’s ban on school mask mandates. The lawsuit, which names several state officials and local school boards as defendants, alleges South Carolina’s policy violates federal law by effectively excluding students with disabilities from participation in the public education system.

It’s one of at least seven lawsuits filed in recent weeks in states with similar restrictions – including Arizona, Florida and Texas – many saying the rules violate the rights of students with disabilities. In one of the Florida suits, a circuit court judge has already issued a ruling, concluding the state’s order banning school mask mandates is unlawful and districts have the right to set their own policies.