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Wednesday, June 19, 2024

An Injunction in Connecticut

 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 California,  New YorkGeorgiaTexas, and Wisconsin.

Chris Dehnel at Enfield Patch:

A Connecticut judge has ordered an injunction against the Enfield Board of Education as part of a lawsuit brought forth by a former board member who is both autistic and deaf.

Sarah Hernandez, regarded as one of the first openly autistic people to run for, and be elected to, public office in Connecticut, filed a lawsuit against the school board, the town of Enfield and then-board chairman Walter Kruzel in late 2019. The suit claims she was discriminated against in violation of the federal Americans With Disabilities Act.

On June 14, United States District Judge Stefan R. Underhill announced the injunction in Bridgeport.

... 

SEE THE TEXT HERE 

The injunction was the next step in the lawsuit after a federal jury in U.S. District Court in Bridgeport sided with Hernandez in January, finding the board and the town discriminated against her in violation of Title II of the ADA and Section 504 of the Rehabilitation Act for failing to provide her with basic accommodations needed to equally participate as a member of the board.

Hernandez was elected to the school board in 2017, running for a seat because she wanted to "show up and be a voice for people with autism in the decision-making process," she said upon filing the suit.

She has difficulty hearing and understanding telephone conversations and in-person conversations unless she gets written materials, can see the speakers and can take notes. She asked the board to communicate with her between meetings in writing, such as by email and text, and to provide written materials and an erasable white board for note-taking, according to the lawsuit.

Although the board agreed to the accommodations, Kruzel and other board officials refused to follow through, repeatedly insisting on communicating by telephone between meetings and refusing to provide written information or a white board for executive sessions. Her requests were often met with open hostility and anger, according to the lawsuit.

Tuesday, June 18, 2024

Measles 2024

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea persists and can hurt people by allowing diseases to spread   Examples include measlesCOVID, flu, and polio.

Beth Mole at Ars Technica:
Since the start of 2024, the US has seen a steady march of measles infections nationwide. As of May 31, the CDC has recorded 146 cases across 21 states. Of those cases, 64 were part of a large outbreak in Chicago, which was declared over on May 30.

Among the national cases, 45 percent were in children under the age of 5. Fifty-five percent of all cases required hospitalization, including 65 percent of the cases in children under the age of 5. The highly infectious virus mostly struck the unvaccinated—85 percent were unvaccinated or had no documented status, while 12 percent had only received one of two recommended doses.

The 146 cases in the first five months of this year have easily surpassed the 58 cases in all of 2023 and the 121 cases in 2022. CDC experts have cautioned that the US is at risk of losing its measles elimination status, attained in 2000 after a decades-long fight against the airborne virus. The US will lose its status if the virus circulates continuously over a 12-month period. In 2019, the US was close to losing its status amid two prolonged outbreaks in New York, which helped the year's case count hit 1,274. Now, in the wake of the pandemic, measles is having a global resurgence, and vaccinations in the US have fallen below target rates that would protect against continued spread.

Monday, June 17, 2024

Residential Treatment Facilities

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

The Senate Finance Committee has issued a staff report titled Warehouses Of Neglect: How Taxpayers Are Funding Systemic Abuse In Youth Residential Treatment Facilities

 In July 2022, the Senate Committee on Finance (the Committee) and Senate Committee on Health, Education, Labor, and Pensions launched an investigation into allegations of abuse and neglect at Residential Treatment Facilities (RTFs) operated by four providers – Universal Health Services (UHS), Acadia Healthcare (Acadia), Devereux Advanced Behavioral Health (Devereux), and Vivant Behavioral Healthcare (Vivant). Since then, the Committee has engaged in a sweeping inquiry, reviewing over 25,000 pages of company productions, holding dozens of conversations with behavioral health stakeholders, and visiting RTFs on the ground.
Children should receive high-quality mental health services in the least-restrictive environment that meets their needs. Children are sent to RTFs by private and public actors, including parents and guardians, psychiatrists, child welfare agencies, the juvenile justice systems, and educational systems. The Committee has jurisdiction over many RTF placements funded through the Medicaid program and the Social Security Act’s child welfare provisions, through which RTF providers are paid per diems for the children in their care.
The RTF providers optimize per diems by filling large facilities to capacity and maximize profit by concurrently reducing the number and quality of staff in facilities. The Committee’s investigation found that children at RTFs suffer harms such as the risk of physical, sexual, and emotional abuse at the hands of staff and peers, improperly executed and overused restraint and seclusion, inadequate treatment and supervision, and non-homelike environments. These harms amount to acute safety concerns and have long-term effects, including suffering, trauma and even death. Taken together, the Committee finds that these harms are endemic to the RTF operating model.

...

 At its core, the RTF model typically optimizes profit over the wellbeing and safety of children. The rampant civil rights violations that children experience in RTFs are a direct consequence of the industry’s model. RTFs employ substandard labor practices and avoid investments in physical maintenance. So long as providers are allowed to proceed with business as usual, children will continue to suffer.

Last week, the committee held a hearing on the subject. 

Sunday, June 16, 2024

Fathers of Children with Disabilities

 In The Politics of AutismI discuss the role of families.  Most of the literature on fatherhood and autism is about paternal age as a "risk factor."

Davies, Alison, Jonathan Rix, and Martin Robb. 2024. “Fathers’ Relationships With Their Disabled Children: A Literature Review”. Disability Studies Quarterly 43 (3). https://doi.org/10.18061/dsq.v43i3.8744.

Our review set out to find how fathers' relationships with their disabled children are represented within the existing literature. Specifically, we were looking for evidence of connections and recurring interactions between fathers and their children that are meaningful to the father. The review covers forty-five papers that include fathers' voices describing their experiences as fathers of disabled children. These studies do not focus on the father-child relationship as a primary concern. We found only two papers referring to the father-child relationship in their abstract or title (Boström and Broberg 2014; Potter 2016). The majority of papers foreground fathers' accounts of challenge, adversity and coping strategies. Few studies prioritise positive aspects of this relationship.

Our analysis identifies a more complex and nuanced picture of father-child relationships than the somewhat negative one emphasised in the majority of papers. Although fathers reveal vulnerability, fear and ambivalence, we find that fathers emphasise the positive aspects of their relationships. However, most research studies do not prioritise these more positive accounts. We identify five main themes: an evolving relationship; caregiving practices; relational aspects of caregiving; recognising and supporting their children's agency; and connectedness. Fathers engage with the practical and relational aspects of caring for their children, providing tender descriptions of attending to their children's physical and emotional needs as well as more ambivalent descriptions of the drudge of daily caregiving. Fathers demonstrate relational care by assuming a range of roles and responsibilities as supporter, team worker, teacher, researcher, advisor, advocate and caregiver. The reciprocal and responsive nature of the father-child relationship is apparent in fathers' descriptions of adapting, shifting expectations and priorities, commitment, solidarity and moments of connection. There is a sense of gratitude hidden in the literature, a recognition of learning from the child, about fathering and becoming a better father. Fathers emphasise the strengths of the child, valuing personal characteristics and attributes, embracing their children's difference and having hopes and expectations for the future. There are few studies providing a sense of everyday father-child interactions but those that do suggest fun, laughter and physical interaction.

The review highlights that fathers' relationships with their disabled children is an under-researched area. The main focus of existing studies is on the negative impact of having a disabled child. Understanding of the complexity and rewarding aspects of fathers' engagement is limited. Future research aimed at providing new insights into our understanding of fathers' relationships with their disabled children is warranted.

Saturday, June 15, 2024

The Double Empathy Problem

In The Politics of Autism, I look at the daily struggles of autistic people, including stereotypes and myths.

 Cheang, R. T., Skjevling, M., Blakemore, A. I., Kumari, V., & Puzzo, I. (2024). Do you feel me? Autism, empathic accuracy and the double empathy problem. Autism, 0(0). https://doi.org/10.1177/13623613241252320. Lay abstract:

The assumption that autistic people lack empathy, particularly imagining how others feel, has been much debated and is now being challenged by an alternative view: the ‘double empathy problem’. This suggests that non-autistic people may find it equally difficult to imagine how autistic people feel. Although this perspective is gaining popularity, research testing whether non-autistic people can accurately imagine and feel an autistic person’s emotions is still limited. Our study used video clips of autistic and non-autistic people recounting emotional events to test if participants from the general population could: track the intensity of the narrators’ emotions; name and feel the same emotion; match where the narrator felt the emotion and indicate how intensely they felt the emotion using a body map. Our results show that participants found it significantly harder to track autistic narrators’ emotions compared to non-autistic narrator’s emotions, especially when viewing clips of narrators feeling happy and sad. We also found that participants felt emotions more intensely in the body when viewing clips of autistic narrators compared to non-autistic narrators, especially when describing anger and fear. These findings support the double empathy problem and have strong implications for therapeutic and interpersonal relationships with autistic people.

Friday, June 14, 2024

Antivaxxers and Antisemites

Since 2020, various white supremacist groups have incorporated anti-vaccine and COVID-19-related messaging into their propaganda.

The Goyim Defense League (GDL), a network of antisemitic provocateurs and white supremacists, has distributed fliers incorporating antisemitic anti-vaccine and COVID-19-related messages on at least 188 occasions since September 2021. For example, following reports that 2024 presidential candidate Robert F. Kennedy Jr., during a July 2023 event, suggested COVID-19 had been “engineered” to spare Ashkenazi Jews, GDL created a flier featuring his quote along with the message, “Does COVID-19 target Blacks and Whites?”
Other white supremacist groups – such as the National Socialist Movement (NSM), Active Clubs, Patriot Front, the New Jersey European Heritage Association (NJEHA) and Hundred Handers – have also incorporated anti-vaccine and COVID-19-related messaging into their propaganda since 2020.
...
Extremists and QAnon supporters have frequently participated in far-right political conferences that prominently feature anti-vax narratives, such as the “Reawaken America” tour in 2023. These events allowed convicted January 6th insurrectionist Dr. Simone Gold and Ann Vandersteel, a QAnon influencer and sovereign citizen, to rub elbows, and to hobnob with elected officials, political candidates and advisors to former President Trump, like Michael Flynn and Eric Trump. The appearance of political leaders and elected officials at these types of events lends legitimacy to anti-vaccine and other conspiratorial beliefs, helping to normalize and further propel them into the mainstream.


Thursday, June 13, 2024

AI Companionship

 In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families

Webb Wright at Scientific American:

Many mental health experts have serious concerns about people who are socially isolated—autistic or not—relying on AI companionship apps as a means of self-treatment or escapism. The problem is “not the inherent content of the AI,” says Catherine Lord, a clinical psychologist in Los Angeles who specializes in autism. But she worries that AI can exacerbate a user’s isolation if the technology is used without the guidance of trained therapists. (Replika and WithFeeling.AI, Paradot’s parent company, have not responded to Scientific American’s requests for comment.)

The open-ended interactions provided by such apps present a double-edged sword for autistic users. Personalized avatars that respond to user behavior with encouraging, humanlike language could help autistic people open up about themselves, especially in ways they may not be able to with other individuals. But these avatars—unlike real people—are always available and very rarely criticize anyone’s opinions. “You end up in this circuit where you have an algorithm dressed up as a human telling you that you’re right and maybe pushing you towards bad choices,” says Valentina Pitardi, an associate professor of marketing at Surrey Business School in England, who has studied the emotional impacts of AI companionship apps.

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Lord also points to what she regards as a lack of real data that show any kind of therapeutic benefit of AI-powered apps for autistic users. She draws a comparison to prescription drugs: new medications must pass rigorous human trials before legal approval, and the same should be true of AI for autistic users, in her view. “It should be clear what the risks are and what the true value is,” she says. But many companion apps are only a few years old, and autism research is often a painstakingly slow process. For more than three decades, Lord has been running a single longitudinal study of autistic people, for example. It will take some time before she and other autism experts fully understand the technology’s potential consequences.

Wednesday, June 12, 2024

SCOTUS Denies Cert in IEP Case

These meetings can turn nasty, and many autism parents have “IEP horror stories.”  One parent told me that she tried to ease tensions by bringing cookies to the meeting.  The principal then shouted to his staff, “Nobody touch those cookies!”  Another parent writes of asking for a sensory diet, a personalized activity plan that helps the student stay focused (e.g., low noise levels for those with a sensitivity to sound).  “After just proclaiming she is extremely knowledgeable about Asperger’s Syndrome, from the mouth of a school psychologist after we suggested our son needed a sensory diet. `Our cafeteria does not have the ability to provide this.’”

 Lauren Sforza at The Hill:

The Supreme Court on Monday rejected an appeal from a father about whether he had the right to video record meetings with school officials about his son’s special education program.

The nation’s highest court turned down the appeal from Scott Pitta, a father of a son with special needs, who wanted to video record a meeting between himself and officials in the school district of Bridgewater, Mass., about his son’s Individual Education Program (IEP).

An IEP is a document that details what services a student with disabilities needs to receive to meet their educational goals. The petition notes that schools are required to consult with parents about a student’s IEP under the Individuals with Disabilities Education Act (IDEA).

Pitta informed school officials he would be video recording meetings with them about his son’s IEP after he realized that the minutes taken on previous meetings were “incomplete,” according to the petition.

The issue arose after school officials said that his son no longer required an IEP, which Pitta disagreed with, according to the petition. In a Sept. 20, 2022, meeting with officials, Pitta requested that the session be recorded “because he did not trust that the Respondents’ own minutes would accurately reflect the relevant statements.”


Tuesday, June 11, 2024

SSI Is Broken

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. According to the Social Security Administration: "Many parents and caretakers of children with disabilities lose work hours and income because of their children’s care needs. Supplemental Security Income (SSI) provides monthly financial support to low-income families with children who have developmental and behavioral disabilities. This includes ASD – and physical impairments."

At NPR, Joseph Shapiro reports on the broken Supplemental Security Income program:
NPR interviewed roughly 200 people, including those who depend upon SSI, lawyers who help them, experts who study SSI and poverty, Social Security officials, staff and others. Among our findings:

—SSI’s asset limit and other rules are so out of date that many of the poorest Americans — who most need SSI — are excluded from the program.

—Largely because of the asset limit, SSI sends out benefit checks to impoverished beneficiaries, but then often, months or years later, tells them there’s been a mistake and that they need to pay back the money, which it calls “overpayments.”

—SSI’s asset limit and other rules impose a substantial “marriage penalty” on recipients, forcing many to skip marriage or lose benefits when they do marry.

—For many, the marriage penalty comes with even more calamitous results than losing a monthly benefit check. Many beneficiaries depend on the Medicaid eligibility that is automatic in most states for someone who qualifies for SSI, but then risk losing Medicaid if they marry.

—Social Security is not up to the task of administering such a complex system. After years of budget constraints imposed by Congress, it is understaffed and hurt by an antiquated computer system and the extreme administrative burden of calculating the asset limit and other SSI rules.
...

Today, 7.4 million people receive those monthly SSI benefits.

Only 43% of those who apply get accepted for SSI. A Social Security Administration office determines whether an applicant meets the asset limit. A state “disability determination service” officer determines whether the person’s disability is significant enough to limit work and other basic life activities.

The wait times to get approved for disability benefits are long — almost doubling during the pandemic when Social Security closed its offices. One congressional report found that some 10,000 people die every year while they wait to get on SSI or a disability program for people with work history.

Of those who collect SSI benefits, 84% are eligible because of a significant disability. There are 1 million children who receive SSI benefits. A U.S. Supreme Court ruling in 1990 expanded eligibility for children. Policy changes in 1984 expanded eligibility for people with mental illness.

Monday, June 10, 2024

MAGA Means "Measles Aren't Going Away"

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   Examples include measlesCOVID, flu, and polio.

number of posts discussed Trump's support for the discredited notion. In IowaNevadaVirginia, and Georgia, he has said:  "I will not give one penny to any school that has a vaccine mandate or a mask mandate."

Megan Messerly at Politico

Trump’s new anti-vaccine persona could have far-reaching consequences if he’s elected to a second stint as president with far-reaching administrative powers. Public health experts say a White House opposed to immunization mandates could potentially cause upticks in cases of measles, polio and other vaccine-preventable diseases, or hamper efforts to fight a future pandemic.

The CDC could pare back the number of vaccines it recommends children receive or eliminate those recommendations entirely. The CDC could change the paperwork required to be shared with parents to make vaccines sound less safe than they are. Or the FDA could increase the number of years of safety testing required for new vaccines and impose other onerous requirements for vaccines to be approved in the U.S.

Trump also could, as a thank-you to vaccine skeptics for their support in November, appoint someone who opposes the government’s traditional role in promoting vaccines, such as Kennedy or Florida Surgeon General Joseph Ladapo, who called for a pause in the use of Covid-19 mRNA vaccines and did not encourage parents to vaccinate their children during a recent measles outbreak.

Sunday, June 9, 2024

Autism Employment: The Big Picture

IThe Politics of Autism, I discuss the employment of adults with autism and other disabilitiesMany posts have discussed programs to provide them with training and experience.

Preetika Rana at WSJ reports that autism employment used to be the focus of relatively few companies, mostly in tech.
That is slowly changing, said Marcia Scheiner, president of Integrate Autism Employment Advisors, a New York-based nonprofit that helps place autistic workers.
“You would have companies who’d say, ‘I know nothing about this,’” a few years ago, she said. “That stigma or the fear factor is largely gone.”
Rachel Lowenstein used to beat herself up for being unable to think on her feet during group meetings, eroding her confidence at work. Around the time she was diagnosed with autism in 2020, her company—advertising agency Mindshare—made supporting people like herself a part of her job.

Last year, she worked on neurodivergence campaigns for Google, Getty Images and others. Lowenstein helped Google curate its first neuroinclusive event, which featured sensory rooms, weighted blankets and fidget toys for participants. For stock-images distributor Getty, she created a photo library with portraits of autistic social-media influencers so the demographic could be better represented.

Lowenstein has learned to change how she interacts with people at work—by getting early downloads of what will be presented at meetings, for example—and now offers career tips to autistic workers on social media.
More companies are becoming open to making accommodations and navigating the challenges that come with hiring neurodivergent employees. Those hurdles include training managers to be more communicative and creating more ways to do job interviews and meetings online.

Companies are using new tools to support neurodivergent employees. Startup Inclusively has built a chatbot for people who might not feel comfortable reaching out to human resources for help. It can tell employees about under-the-radar benefits from their employer, such as subscriptions to meditation apps to help with anxiety, noise-canceling headphones and transcription services for hard-to-follow meetings, co-founder Charlotte Dales said.

Saturday, June 8, 2024

Autistic Teen Dies After Abuse by Jail Guards

In The Politics of Autism, I discuss interactions between the justice system and autistic people.

Erin Glynn and Laura A. Bischoff at the Columbus Dispatch:
Inside the Montgomery County Jail, guards taunted, belittled and threatened Isaiah Trammell, a 19-year-old who had autism spectrum disorder.

Deputies on the overnight shift told Trammell he was "ridiculous," "embarrassing" and "acting like an ass," surveillance video shows. Officers strapped Trammell into a restraint chair two separate times and threatened more time in the chair if he didn’t calm down.

Trammell couldn’t calm himself. He banged his head on the cell door, howled and repeatedly screamed “Let me out!”

Head-banging or other self-injury behaviors are more prevalent among people with autism. For Trammell, it was a dangerous coping mechanism that he continued during his brief time in jail.

“You remember how that restraint chair felt? Remember what the sergeant said? You're gonna go in for 10 hours next time you go in there. You want to do that?" one officer told Trammell, hours after he had been released from the chair the first time.

One officer said they couldn't use the restraint chair, prompting another to respond: “Just put the chair in front of his (expletive) cell so he stops. Give him a constant reminder.”

The restraint chair is supposed to be a last resort, only used in extreme circumstances and when the safety of the incarcerated person or others is in danger. Staff are supposed to use other interventions first, such as offering medication.

Trammell begged for his medications, a phone call and a blanket. No one heeded his pleas.

Less than 10 hours after entering jail, Dayton paramedics loaded Trammell into an ambulance.

He died three days later. The coroner ruled it a suicide − a ruling Trammell's mother wants changed.

Montgomery County Sheriff Rob Streck said Trammell shouldn’t have been in jail, given his mental health issues.

Trammell's case isn't an outlier. A USA TODAY Network Ohio investigation found that most of the 16,000 people in Ohio jails each day suffer from mental illness.

Friday, June 7, 2024

"Embodied Equity"

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

Olivia Sanchez at The Hechinger Report:

[Niki Elliott] became a special education teacher, and said she never stops thinking about how to create a world in which a young Black student like herself could be taught to work with (instead of against) her learning differences, to reach her full potential. Now, a clinical professor in the School of Leadership and Education Sciences at the University of San Diego, she’s helping to open, in August, the school’s Center for Embodied Equity and Neurodiversity.

At its simplest, neurodiversity is the idea that everybody’s brains work differently, and that these differences are normal. Neurodivergent, which is not a medical diagnosis, is an umbrella term that refers to people who have autism spectrum disorder, ADHD, dyslexia, or other atypical ways of thinking, learning and interacting with others.

“Embodied equity,” the other term in the new center’s name, refers to an anti-discrimination approach that considers all aspects of people’s identities — including race, gender, ability, socioeconomic status — when addressing social problems.

...

 Elliott said the center’s work will fall into four main categories: training K-12 teachers and education support staffers, training community college educators, working on policy issues that affect neurodivergent students and offering programs to set up neurodivergent students for success in college and the workplace.

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The number of colleges where at least 5 percent of students report having a disability has risen from 510 in 2008 to 1,276 in 2022, according to data from the Integrated Postsecondary Education Data System. But this measure is imperfect: It includes students who have physical disabilities. Also, roughly two-thirds of college students with disabilities who choose not to disclose their disability to their college.