Racial and Ethnic Disparities

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

At JAMA Netw Open,  Bennett M. Liu and colleagues have an article titled "Racial and Ethnic Disparities in Geographic Access to Autism Resources Across the US."

Key Points

Question  Do autistic children belonging to minoritized racial and ethnic groups have access to fewer autism resources than White autistic children in the US and, if so, where are these disparities most significant?

Findings  In this cross-sectional study involving 530 965 autistic children and 51 071 autism services in the US, analyses by core-based statistical area revealed that American Indian or Alaska Native, Black or African American, and Hispanic or Latino autistic children had access to significantly fewer resources than White autistic children.

Meaning  These findings suggest that autistic children from minoritized racial and ethnic groups experience significant disparities in access to autism services, with certain core-based statistical areas having greater inequities than others, necessitating a prioritized response strategy to address these disparities.

Reawaken America

 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.

Unfortunately, Republican politicians and conservative media figures are increasingly joining up with the anti-vaxxers.   Even before COVID, they were fighting vaccine mandates and other public health measures. 

The anti-vax movement has a great deal of overlap with MAGA, QAnon, and old-school conspiracy theory.  

Peter Stone at The Guardian:

A far-right project that has helped spread Donald Trump’s false claims about voting fraud in 2020, and misinformation about Covid vaccines, is trying to expand its mission, while facing new criticism from scholars and religious leaders about its incendiary political and Christian nationalist messages.

ReAwaken America, a project of Oklahoma-based entrepreneur Clay Clark, has hosted numerous revival-style political events across the US after receiving tens of thousands of dollars in initial funds in 2021 from millionaire Patrick Byrne, and become a key vehicle for pushing election denialism and falsehoods about Covid vaccines.

ReAwaken America also boasts close ties to retired Lt Gen Michael Flynn, who in December 2020 met with Trump, Byrne and others at the White House to plot ways to reverse Trump’s election loss. The meeting happened shortly after Trump pardoned Flynn, who was convicted for lying to the FBI about his contacts with the Russian ambassador prior to serving briefly as Trump’s national security adviser.

Clark’s project also has links to Dr Simone Gold, who served a 60-day jail sentence for illegally entering the Capitol on 6 January and founded America’s Frontline Doctors, an anti-vaccine group that has also touted bogus cures.

...

Flynn and Gold have made multiple appearances at ReAwaken America events, and spoke this January at a two-day gathering hosted at the Tennessee church of rightwing pastor Greg Locke. It drew other Trump loyalists such as the My Pillow chief Mike Lindell, Eric Trump, Roger Stone and Kash Patel, all of whom have appeared at other ReAwaken meetings.

Locke has attended a few other ReAwaken events too, and earned notoriety for calling vaccines “sugar water”, the pandemic fake, and holding book burnings.

...

Besides hosting Gold at its meetings, the ReAwaken website serves as a resource for vaccine naysayers. It provides information about jobs where proof of vaccinations are not required, and how to “request a Covid vaccine religious exemption”.

Locke has said that autism is a form of demonic possession. 

Suicide and Self-Injuiry

In The Politics of Autism, I write about the many challenges facing people on the spectrum.  Among many other things, they are at high risk for suicide. (In July, the United States transitioned from 10-digit National Suicide Prevention Lifeline to 988 – an easy-to-remember three-digit number for 24/7 crisis care. "

 At Autism, Theodoros V Giannouchos and colleagues have an article titled "Suicide and non-fatal self-injury-related emergency department visits among individuals with autism spectrum disorder."  The lay abstract:

This study used data for 14.4 million individuals with 43.5 million emergency department visits from all hospitals in the state of New York to explore the association between suicide and non-fatal self-injury-related (self-injury) emergency department visits and autism spectrum disorder. Overall, we found that individuals with autism spectrum disorder had more emergency department visits and admissions through the emergency department, more years of emergency department utilization, and higher prevalence of mental health-related comorbidities. Individuals with autism spectrum disorder were also significantly more likely to have at least one self-injury-related emergency department visit compared to those without autism spectrum disorder. These results emphasize the need to raise awareness across both family caregivers and healthcare providers on the increased suicide and self-injury risks that individuals with autism spectrum disorder face and to improve care delivery practices. In addition, effort to promote and increase timely access to mental health care is an urgent priority for individuals with autism spectrum disorder.

From the article:

Combined, our results suggest that while the high and growing suicide, and non-fatal self-injury rate in the United States is a concern for the entire population, it is a particular concern in the ASD community and notably among younger children and adolescents (Healthcare Cost and Utilization Project, 2020). Given existing documented issues for individuals with ASD in accessing needed care in a timely manner, many are forced to seek treatment from EDs that are often overwhelmed and not well equipped to address the specific needs of individuals with ASD (Muskat et al., 2015; Nageswaran et al., 2011; Nicolaidis et al., 2013). Our findings suggest that identifying ways to increase timely access to outpatient care—and mental health care in particular given the observed and increased prevalence of ED visits for mental health conditions among those with ASD which is consistent with previous work—is an urgent priority for individuals with ASD to provide continuous and supportive care and to prevent suicidal and non-fatal self-injurious attempts (Lytle et al., 2018). This is emphasized by previous work that found more than half of individuals who leave the ED after a suicide attempt never attend their first outpatient appointment (Lai et al., 2019). Increasing access to outpatient care will require policy changes to overcome both the shortage of mental health care providers in certain parts of the country as well as the large proportion of mental health care professionals who do not accept health insurance, such as expansion of virtual appointments, higher reimbursement rates, and reduced administrative and contractual complexity (Bishop et al., 2014; Thomas et al., 2009).

Police and Autistic People

In The Politics of Autism, I discuss interactions between police and autistic people.  When cops encounter autistic people they may not respond in the same way as NT people, and things can get out of hand. Among other things, they may misinterpret autistic behavior as aggressive or defiant, and respond with tasers, batons, chokeholds, or worse.

Posts have discussed incidents in the following places:

• Orlando
• Richmond, VA
• Jackson County, KS
• Glynn County, GA
• Douglas County, CO
• Graymoor-Devondale, KY
• Vacaville, CA
• Metrairie, LA
• Salt Lake City
• Statesville, NC
• Buckeye, AZ

This list is not exhaustive.  Indeed, it does not even scratch the surface.

Police training could be helpful, but we also need programs to evaluate the implementation and effectiveness of the training.

Better Care Better Jobs Act

The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for adults with intellectual and developmental disabilities. Home and Community-Based Services (HCBS) are particularly important.

A release from Senator Bob Casey:

Today, U.S. Senator Bob Casey (D-PA), Chairman of the U.S. Senate Special Committee on Aging, and Congresswoman Debbie Dingell (D-MI-6) are introducing legislation to expand access to home and community-based services for older adults, people with disabilities, and injured workers, while increasing pay and improving benefits for the caregivers who provide this life-sustaining care. The Better Care Better Jobs Act would enhance Medicaid funding for home care, helping many of the over 650,000 people on waiting lists nationally finally receive care in the setting of their choice, allowing them to stay active in their communities, and live independently. This legislation would also strengthen the caregiving workforce, improve quality of life for families, and boost the economy by creating good-paying jobs to make it possible for families and workers alike to thrive economically.

...
The COVID-19 pandemic highlighted the urgent need to ensure that all Americans have the option to receive quality, long-term care in the setting that meets their needs and preferences, and the vast majority of Americans prefer to receive such care and support at home. While all states provide coverage for some home care services, there are significant variations and gaps in coverage due to varying eligibility and benefits standards. The home care workforce—a majority of whom are women and people of color—earn a median wage of $13 per hour with few or no benefits while providing life-sustaining care. Roughly 18 percent of these workers live in poverty. This results in exceptionally high annual turnover rates, estimated to be above 60 percent.

The Better Care Better Jobs Act would increase payment rates to promote recruitment and retention of direct care workers, increase wages, and develop and update training opportunities. The legislation would provide support to the Centers for Medicare & Medicaid Services to conduct oversight and encourage innovation to benefit direct care workers and care recipients.

The Senate cosponsors of the Better Care Better Jobs Act are U.S. Senators Bob Casey (D-PA), Ron Wyden (D-OR), Chuck Schumer (D-NY), Patty Murray (D-WA), Tammy Duckworth (D-IL), Sherrod Brown (D-OH), Maggie Hassan (D-NH), Bernie Sanders (I-VT), Raphael Warnock (D-GA), Jeff Merkley (D-OR), Chris Van Hollen (D-MD), Kristen Gillibrand (D-NY), Sheldon Whitehouse (D-RI), Richard Blumenthal (D-CT), John Fetterman (D-PA), Alex Padilla (D-CA), Tim Kaine (D-VA), Dick Durbin (D-IL), Tammy Baldwin (D-WI), Tina Smith (D-MN), Ed Markey (D-MA), Amy Klobuchar (D-MN), Jack Reed (D-RI), Elizabeth Warren (D-MA), Debbie Stabenow (D-MI), Maria Cantwell (D-WA), Ben Cardin (D-MD), Cory Booker (D-NJ), Brian Schatz (D-HI), Angus King (I-ME), Martin Heinrich (D-NM), Mazie Hirono (D-HI), Jeanne Shaheen (D-NH), Peter Welch (D-VT), Chris Murphy (D-CT), Bob Menendez (D-NJ), Ben Ray Luján (D-NM), Dianne Feinstein (D-CA), Catherine Cortez Masto (D-NV), and Gary Peters (D-MI).

Read more about the Better Care Better Jobs Act here.

Prevalence and Inequality

In The Politics of Autism, I discuss evaluation, diagnosis, and the uncertainty of prevalence estimates.

 Aria Bendix at NBC:

Autism rates tripled among children in the New York and New Jersey metropolitan area from 2000 to 2016, according to a study published Thursday in the journal Pediatrics.

The authors, a team from Rutgers University, calculated the trend by analyzing Centers for Disease Control and Prevention estimates of the number of children who've been identified as having autism spectrum disorder by age 8.

Although there is no medical test for autism, the CDC has established a network of 17 sites across the country that estimate autism rates based on a combination of formal medical diagnoses and records from schools and health care providers.

Nationally, the rise in autism rates has been similar to the trend in New York and New Jersey, according to a 2021 CDC report. One in 54 children had been diagnosed with autism by age 8 in 2016, compared to 1 in 150 in 2000.

Advances in diagnostic capabilities and greater understanding and awareness of autism spectrum disorder seem to be largely driving the increase, the Rutgers researchers said. But there’s probably more to the story: Genetic factors, and perhaps some environmental ones, too, might also be contributing to the trend.

Precisely what those other factors are is still unknown, but researchers are at least clear on one fact: Autism has nothing to do with vaccines.

"We know for sure, for so many years now, that vaccines don’t cause autism," said Santhosh Girirajan, an associate professor at Pennsylvania State University who studies the genetic underpinnings of neurodevelopmental disorders and wasn't involved in the new study.

A release from Rutgers:

“One of the assumptions about ASD is that it occurs alongside intellectual disabilities,” said Josephine Shenouda, an adjunct professor at the Rutgers School of Public Health and lead author of the study published in the journal Pediatrics. “This claim was supported by older studies suggesting that up to 75 percent of children with autism also have intellectual disability.”

“What our paper shows is that this assumption is not true,” Shenouda said. “In fact, in this study, two-in-three children with autism had no intellectual disability whatsoever.”

Using biannual data from the New Jersey Autism Study, researchers identified 4,661 8-year-olds with ASD in four New Jersey counties (Essex, Hudson, Ocean and Union) during the study period. Of these, 1,505 (32.3 percent) had an intellectual disability; 2,764 (59.3 percent) did not.

Subsequent analysis found that rates of ASD co-occurring with intellectual disability increased two-fold between 2000 and 2016 – from 2.9 per 1,000 to 7.3 per 1,000. Rates of ASD with no intellectual disability jumped five-fold, from 3.8 per 1,000 to 18.9 per 1,000.

Shenouda said there may be explanations for the observed increases, though more research is needed to specify the precise causes.

“Better awareness of and testing for ASD does play a role,” said Walter Zahorodny, associate professor at the Rutgers New Jersey Medical School and senior author on the study. “But the fact that we saw a 500 percent increase in autism among kids without any intellectual disabilities – children we know are falling through the cracks – suggests that something else is also driving the surge.”

ASD prevalence has been shown to be associated with race and socioeconomic status. The Rutgers study identified that Black children with ASD and no intellectual disabilities were 30 percent less likely to be identified compared with white children, while kids living in affluent areas were 80 percent more likely to be identified with ASD and no intellectual disabilities compared with children in underserved areas.

Earmarks Are Good: The Case of Staten Island

In The Politics of Autism, I discuss the congressional role in the issue.

Dr. Gracelyn Santos at The Staten Island Advance:

Congresswoman Nicole Malliotakis has announced she helped secure $500,000 for the Eden II School for Autistic Children as part of the federal government’s appropriations process.

Eden II will use the funds to renovate an existing building to expand day habilitation services for adults with autism.

“For nearly 50 years, Eden II Programs have gone above and beyond to support people with autism by helping them achieve their full potential through a number of educational, residential, and day habilitation programs,” Malliotakis said. “Serving more than 500 individuals across the New York City and Long Island communities, Eden II has become a leader in helping participants and their families overcome many of the challenges associated with Autism Spectrum Disorder

DeSantis, Lapado, and Antivaxxers

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

Unfortunately, Republican politicians and conservative media figures are increasingly joining up with the anti-vaxxers.   Even before COVID, they were fighting vaccine mandates and other public health measures. 

John Kennedy at USA Today:

Days after Gov. Ron DeSantis opened his second term with a combative speech blasting federal COVID-19 policies as based “more on ideology and politics than on sound science,” Florida’s surgeon general was a guest on a podcast called Liberty Lockdown.

“Isn’t it a beautiful day to be unvaccinated? It feels so good,” host Clint Russell said before starting into his conversation with Dr. Joseph Ladapo, the state’s top doctor who also is a tenured faculty member at the University of Florida.

With DeSantis expected in coming months to formally launch his bid for the 2024 Republican presidential nomination, Ladapo is emerging as a central player in the governor’s outreach to vaccine skeptics and opponents who now form a stunningly large part of the GOP’s national voter base.

...

The Liberty Lockdown appearance was the doctor’s latest on podcasts which attract a sizable segment of conservative followers.

Weeks earlier, in a First Class Fatherhood podcast airing Nov. 30, Ladapo urged listeners to rely on “intuition,” when it came to following medical or scientific advice.
...

Ladapo also appeared on right-wing podcasts in the weeks leading up to the November election that DeSantis won by 19% over Democrat Charlie Crist, the largest victory margin in a Florida governor’s race in 40 years.

He disputed widely accepted views of masking and vaccines on shows hosted by Dr. Sherri Tenpenny, an Ohio physician who promotes false claims about COVID-19 shots and wrongly says childhood vaccines cause autism.

Ladapo also appeared on X22 Report, a far-right podcast known for sharing QAnon-related conspiracies and misinformation. He also was on the podcast of conspiracy theorist Stew Peters, who has touted a wide range of false claims about the 2020 election, COVID-19 and more.

Good News on Disability Employment

 In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities.

From the Kessler Foundation:

The year 2022 was a remarkable and historic time for the employment of people with disabilities. That’s according to today’s National Trends in Disability Employment (nTIDE) 2022 Year-End Special Edition, issued by Kessler Foundation and the University of New Hampshire’s Institute on Disability (UNH-IOD), based on data from the U.S. Bureau of Labor Statistics(BLS) Jobs Reports.

Employment trends in 2022 built upon the 2021 recovery from the pandemic recession—where people with disabilities reached beyond pre-COVID-19 levels and even pre-Great Recession levels. These trends are in stark contrast to those of their working counterparts without disabilities who have not yet reached pre-pandemic levels.

The average monthly employment-to-population ratio for people with disabilities (ages 16-64) increased from 31.3 percent in 2021 to 34.8 percent in 2022, which was also higher than the 29.1 percent recorded in 2020 (during the height of the pandemic) and 30.9 percent recorded in 2019 (prior to the pandemic).

In contrast, for people without disabilities (ages 16-64), the employment-to-population ratio increased from 72.5 percent in 2021 to 74.4 percent in 2022, which was higher than the 70.0 percent recorded in 2020 but not above the 74.6 percent in 2019. The employment-to-population ratio, a key indicator, reflects the percentage of people who are working relative to the total population (the number of people working divided by the number of people in the total population multiplied by 100).

Diagnosing Adults

In The Politics of Autism, I write:

Many analyses of autism speak as if it were only a childhood ailment and assume that parents are the main stakeholders. But most children with autism grow up to be adults with autism, and they suffer uniquely high levels of social isolation. Almost 40 percent of youth with an autism spectrum disorder never get together with friends, and 50 percent of never receive phone calls from friends. These figures are higher than for peers with intellectual disability, emotional disturbance, or learning disability. When school ends, many adults with autism have grim prospects. Though evidence is sparse, it seems that most do not find full-time jobs. Compared with other people their age, they have higher rates of depression, anxiety, bipolar disorder, and suicide attempts.

From the 2023 IACC Draft Strategic Plan: 

[A]ncreasing numbers of adults are presenting to clinics for first-time diagnoses of ASD, and recent studies suggest that many adults with ASD may be unidentified and living in the community without appropriate supports84,85. Many autistic individuals diagnosed as adults report being misdiagnosed with other mental health conditions initially, such as borderline personality disorder, generalized anxiety, or mood disorders such as depression or bipolar disorder86, 87 . These misdiagnoses may result in being overmedicated or being subjected to unnecessary medical treatments. Others report receiving care for mental health conditions such as eating disorders while displaying traits of autism that were unrecognized or ignored by healthcare providers88. Thus, there is a need to improve diagnostic tools that are specific for adults. There is also a need to practitioner training to recognize traits of autism in adults.

84. Brugha TS, McManus S, Bankart J, et al. Epidemiology of autism spectrum disorders in adults in the community in England. Arch Gen Psychiatry 2011;68:459-65.
85. Croen LA, Zerbo O, Qian Y, et al. The health status of adults on the autism spectrum. Autism 2015;19:814-23.
86. Lupindo BM, Maw A, Shabalala N. Late diagnosis of autism: exploring experiences of males diagnosed with autism in adulthood. Curr Psychol 2022:1-17.
87. Rødgaard EM, Jensen K, Miskowiak KW, et al. Childhood diagnoses in individuals identified as autistics in adulthood. Mol Autism 2021;12:73.
88. Bargiela S, Steward R, Mandy W. The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype. J Autism Dev Disord2016;46:3281-94.

Burbank's Mayor is Autistic

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 York, Georgia, Texas, and Wisconsin.

In Burbank, California, the City Council chooses one of its members as mayor.  (An appointed city manager is responsible for day-to-day administration.)  Last month, the Council chose  Konstantine Anthony, who now has a very important distinction

Just wanted to remind everyone that this week the United States appointed its first openly Autistic mayor, @KonstantineinCA! pic.twitter.com/n4cdq5RhgM

— 🌟Autistic Voices United (El:Head Writer) (@autismsupsoc) December 24, 2022

From the City of Burbank:

Konstantine Anthony grew up in the small suburban town of Castro Valley, just outside of Oakland, CA. He spent his middle school years in rural Iowa and studied film at San Francisco State University with a diverse group of students from all over the world. In 2004, he moved to Burbank and became a union actor in film and television.

With 20 years of experience in improv comedy, Konstantine has appeared in numerous television shows and movies. That experience, and a passion for social justice, made running for office in the Media Capital a natural next step. On his second run for Burbank City Council, he won a seat with a record-setting 17,529 votes. In doing so, he also became the first openly autistic elected official west of the Mississippi.

In a 2020 interview, he said:  "My advocacy for disability rights stems from my autism diagnosis and witnessing the discrimination my fellow disabled Americans experience every day."

Coordination

In The Politics of Autism, I discuss the policy paradoxes of the issue.  I presented a paper titled "Autism and Accountability" at the 2020 Annual Meeting of the American Political Science Association.  

The abstract:

We expect policymakers to be accountable to the public for their handling of public issues. The case of autism presents fundamental difficulties. First, the boundaries of autism have shifted over the years, and they remain contested. Second, there are multiple publics with radically different views about the character of the issue. Third, there is no single “autism policy.” Instead, the issue spans multiple issue areas where responsibility is diffused and the connections between policy outputs and outcomes are difficult to establish. The paper ends with modest recommendations for improving our knowledge base.

Full text:  here: https://www.scribd.com/document/475658529/Autism-and-Accountability

From the 2023 IACC Draft Strategic Plan: 

Autism- and disability-related programs exist at numerous federal agencies to address a wide variety of issues ranging from health, research, disability services, justice, housing, employment, transportation, military needs, communication, and other diverse issues. Given the large size and distributed nature of federal activities, the U.S. Congress and federal agencies have also put in place several structures to coordinate federal activities around disabilities and, in some cases, autism specifically. These coordination structures foster interdepartmental and interagency communication and collaboration on issues that are essential to autism and disability-related federal activities.

The Interagency Autism Coordinating Committee (IACC) is a foundational part of the federal coordination structure for autism that was created under the Children’s Health Act of 2000 (Public Law106-310), reconstituted under the Combating Autism Act of 2006 (CAA; Public Law 109-416), and most recently reauthorized under the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2019 (Public Law 116-60). It is the only autism-specific interagency federal advisory committee in the federal government. The Autism CARES Act of 2019 outlines requirements for the membership of the IACC, which includes officials representing an array of federal departments and agencies and public members who represent a variety of perspectives within the autism community. Collectively the committee provides advice to the HHS Secretary concerning issues related to autism and coordinates federal autism efforts. 

In 2014, Congress added a new component to the federal coordination structure by requiring in the Autism CARES Act of 2014 the designation of a National Autism Coordinator (NAC), “an existing official within the Department of Health and Human Services to oversee, in consultation with the Secretaries of Defense and Education, national ASD research, services, and support activities.” The duties of the NAC include coordinating and implementing federal autism research, services, and support activities, taking into account the IACC Strategic Plan, as well as ensuring that federal ASD efforts are not unnecessarily duplicative. The NAC accomplishes cross-agency and cross-departmental coordination in part through the activity of the Federal Interagency Workgroup on Autism (FIWA), an all-federal working group of representatives from multiple federal departments and agencies, most of which are also represented on the IACC. The NAC has led the development of several comprehensive reports to Congress on federal autism activities and other projects requiring cross-agency collaboration.

A third layer of interagency and intra-agency coordination is composed of a series of federal advisory committees and coordinating committees that work on specific issues related to autism and disabilities. At the National Institutes of Health (NIH), the NIH Autism Coordinating Committee coordinates NIH intra-agency efforts on autism research. Other advisory committees and agencies across the federal government that contribute to federal coordination on issues of relevance to autism and disabilities include:

• 2021-2023 IACC Strategic Plan for Autism Research, Services, and Policy Draft January 2023 11

• Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act Council (family caregiver issues)

• President’s Committee for People with Intellectual Disabilities (intellectual disabilities), theInteragency Committee on Disability Research (disability research) 

• Federal Partners in Transition (youth with disabilities)

• National Council on Disability (a federal agency for disability policy)

• Interdepartmental Serious Mental Illness Coordinating Committee (mental illnesses that may cooccur with autism)

• Federal Communications Commission Disability Advisory Committee (communication technology for people with disabilities)

• National Advisory Committee on Individuals with Disabilities and Disasters (disaster preparedness and response)

• Advisory Committee on Accessible Air Transportation - ACCESS Advisory Committee (disabilities and air transportation).

 Each of these advisory committees focuses on specific topics related to disabilities, which are informative to the efforts of the IACC to coordinate autism activities.

SCOTUS Case on IDEA and ADA

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act. II also discuss the day-to-day challenges facing autistic people and their families. 

Amy Howe at SCOTUSblog:

The Supreme Court on Wednesday seemed ready to side with a deaf student who is seeking financial compensation from a Michigan school district that failed to provide him with a qualified sign-language interpreter.

The student, Miguel Perez, alleges that the school district violated the Americans with Disabilities Act. Lower courts threw out his lawsuit, ruling that a different federal law, the Individuals with Disabilities Education Act, required him to “exhaust” his claims against the district – that is, fully pursue them in administrative proceedings before going to federal court. During over an hour of debate on Wednesday, however, a majority of the justices seemed inclined to allow Perez’s lawsuit to go forward.

Representing Perez, lawyer Roman Martinez stressed that for over 12 years, the Sturgis Public Schools “neglected Miguel, denied him an education, and lied to his parents about the progress he was allegedly making in school.” That “shameful conduct,” Martinez said, “permanently stunted Miguel’s ability to communicate with the outside world.”

Perez initially brought claims under both the ADA and the IDEA through state administrative channels. An administrative judge threw out the ADA claim on the ground that he lacked authority to hear it, and Perez reached a settlement with the school district on the IDEA claim. Perez then tried to revive the ADA claim in federal court.

The school district now argues that Perez’s IDEA settlement “extinguishes” Perez’s right to seek financial compensation under the ADA, Martinez said. “But Congress,” he continued, “didn’t punish kids for saying yes to favorable IDEA settlements.”

Representing the Sturgis Public Schools, lawyer Shay Dvoretzky countered that the primary purpose of the IDEA is to ensure that all students receive the education to which they are entitled. The IDEA’s exhaustion requirement, Dvoretzky insisted, simply channels all claims through the administrative procedures first, rather than allowing parents to go straight to court.

From oral argument in Perez v. Sturgis Public Schools:

JUSTICE KAGAN: Well, I don't know that your view of how school districts are going to operate is always going to be true. As between the two, it strikes me that actually it's the parents that have the greater incentive to get the education fixed for their child. 

MR. DVORETZKY: I think that sometimes that -- 

JUSTICE KAGAN: This isn't litigation being run by a lot of rapacious lawyers, you know. This is litigation being run by parents who are trying to do right by their kids. 

IACC and Research Priorities

  In The Politics of Autism, I discuss the Inter-Agency Autism Coordinating Committee and research priorities.

The Interagency Autism Coordinating Committee has released a draft strategic plan.

Figure 1 shows the trend in funding for each of the Question areas over time. In 2008, the reported autism research funding for federal agencies and private organizations was $222.2 million and 745 projects. In 2020, funding for autism research among both federal and private funders totaled $409.2 million and spanned 1,536 research projects. Over the thirteen years, autism research showed a general upward trend in funding, increasing by 84% since 2008. However, not all Question areas have shown the same pattern of growth. Question 2 (Biology) is the research area that has shown by far the most dramatic increases in funding, peaking at $195.6 million in 2019. In 2020, research on genetic and environmental factors (Question 3) received the second largest amount of research dollars. Funding amounts for Question 3 started out relatively high in 2008, then dipped from 2011-2014, but have shown relative increases in recent years. Question 1 (Screening and Diagnosis), Question 5 (Services), and Question 7 (Infrastructure) have received largely consistent investments in research since 2008. Funding for Question 4 (Interventions) has also been fairly stable but has been on a slight downward trend in recent years. Research focused on lifespan (Question 6) has consistently received the lowest levels of funding but has shown encouraging growth over the past four years.

Using Strengths

In The Politics of Autism, I write:

Many analyses of autism speak as if it were only a childhood ailment and assume that parents are the main stakeholders. But most children with autism grow up to be adults with autism, and they suffer uniquely high levels of social isolation. Almost 40 percent of youth with an autism spectrum disorder never get together with friends, and 50 percent of never receive phone calls from friends. These figures are higher than for peers with intellectual disability, emotional disturbance, or learning disability. When school ends, many adults with autism have grim prospects. Though evidence is sparse, it seems that most do not find full-time jobs. Compared with other people their age, they have higher rates of depression, anxiety, bipolar disorder, and suicide attempts.

 At Autism, Emily C. Taylor and colleagues have an article titled "Psychological strengths and well-being: Strengths use predicts quality of life, well-being and mental health in autism."  The lay abstract:

It is often suggested that supporting autistic people to identify and use their strengths will lead to positive outcomes. However, little research has explored if this is true. To date, no research has explored whether autistic people already have knowledge of and use their strengths, nor whether increased strengths knowledge and use is linked to good outcomes, such as a better quality of life, well-being and improved mental health. Comparing large samples of autistic and non-autistic people, this study tested these unanswered questions. We found that autistic and non-autistic people reported similar strengths, but autistic people reported less knowledge and use of their strengths compared to non-autistic people. Importantly however, autistic people who reported using their strengths often had better quality of life, well-being and mental health than autistic people who reported using their strengths less frequently. We, therefore, propose that supporting autistic people to use their strengths more often may be a valuable way to boost well-being in this population.

Resarch Overlooks Physical Health Disparity

 In The Politics of Autism, I discuss the Inter-Agency Autism Coordinating Committee and research priorities.

From Vanderbilt University Medical Center,:

Physical health disparity conditions in autistic adults have not been the focus of any research funded by the U.S. National Institutes of Health (NIH) in the last four decades, an analysis of a federal database found.

Using the NIH Research Portfolio Online Reporting Tools Expenditures and Results (RePORTER) database to determine whether the NIH has funded any research related to physical health disparity conditions in autistic adults, T. A. Meridian McDonald, Ph.D., faculty research instructor in the Department of Neurology at Vanderbilt University Medical Center, used 30 separate searches to discover that "autism" is often used as a key term—not the target population.

Results of the study are published today in the Journal of Autism and Developmental Disorders.

Autistic adults are at greater risk of nearly every major chronic health condition, including obesity, diabetes, gastrointestinal and sleep disorders, and cardiovascular and immune conditions. These conditions contribute to increased pain and mortality experienced by autistic people as well as to decreased quality of life such as lower rates of employment and social inclusion.

"We don't know if treatments designed for the general population will work for autistic people," McDonald said. "Take cognitive behavioral therapy, the front-line treatment of insomnia, for example. This treatment is typically carried out in six to eight face-to-face provider-patient clinic sessions. During these sessions, the clinician provides a ton of information about how sleep works and how to do the treatment. The delivery of this information in these types of sessions may overtax many autistic people's information and social processing abilities."

It's key to understand how treatments work in different populations, accounting for social and physiological determinants of health, McDonald said. In the example of insomnia, the treatment often requires patients to change routines and habits, and that may be a serious challenge for autistic patients, she said.

McDonald used "autism," and "adult" coupled with one of 30 health disparity condition terms in the RePORTER, a repository of NIH-funded projects that is searchable with key terms. Searches surfaced numerous studies, which, upon analysis, often used "autism" in a project as a key term rather than a study designed to evaluate the prevalence or manifestation of disease or treatment in autistic people.

Research found only four studies that look at health conditions related to autistic adults, but none of the studies examined the treatment of physical health disparity conditions in autistic adults.

"Many of these studies are focused on the prevention of multiple health conditions. A study's goals might focus on the prevention of neurological conditions, such as stroke, epilepsy and autism. This type of study is not looking at the prevention of stroke in autistic people, who may have different risk factors or need specialized treatment options," said McDonald, lead author on "Mind the NIH-Funding Gap: Structural Discrimination in Physical Health-Related Research for Cognitively Able Autistic Adults."

"We need funding to test whether interventions are effective with autistic people. If treatments are not effective, then funded research is needed to adapt or develop interventions that are effective in treating physical health disparity conditions experienced by autistic adults," she said.

Both the U.S. Congress and the Interagency Autism Coordinating Committee identified co-occurring physical health conditions as a research priority and allocated funds for autism research to the NIH. Each of the 27 institutes that comprise the NIH have latitude in how it determines its research priorities.

The research in JADD describes several potential "nodes," or processes that contribute to the lack of studies focused on health disparities in autistic people, including designation of a "primary disease," which are often thought to be the cause of other conditions.

McDonald and colleagues note this assumption has not been tested in autism and "this designation [of primary disease] prevents researchers from testing whether co-occurring physical health conditions can be treated in autism."

Audrey Scudder, co-author and an autistic undergraduate student at Vanderbilt University and active member of both the McDonald's Spectrum for Life Lab and the Vanderbilt Autism & Neurodiversity Alliance, wants to prioritize advocacy for the autistic community as she pursues a research career.

"Many of my family members, friends and other fellow community members have expressed a need for health care that is accessible and effective for autistic people," Scudder said. "Addressing health disparities would greatly improve the quality of life of many autistic adults who struggle with finding care that treats their whole personhood. This study indicates that at this point in time there isn't enough research supporting what's effective in this population of adults."

Autistic adults have been left out of the recent shift to root out disparities in research, diagnosis and treatment, McDonald said.

"Moving forward I want the NIH to change funding policies to prioritize research on physical health disparity conditions in autistic adults. At the very least, they should not be excluded from review across agencies that fund physical health research," she said.


More information: T. A. Meridian McDonald et al, Mind the NIH-Funding Gap: Structural Discrimination in Physical Health–Related Research for Cognitively Able Autistic Adults, Journal of Autism and Developmental Disorders (2023). DOI: 10.1007/s10803-022-05856-w
Journal information: Journal of Autism and Developmental Disorders

Infinite

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

Joshua Pitney (aka "JP"), a sophomore at Pepperdine University, made this 7-minute narrative film.  It depicts an autistic student who come to accept his identity.

Yet Another Correlate: Where Forebears Lived

In The Politics of Autism, I discuss various ideas about what causes the condition. 

There is a very long and growing list of other correlates, risk factors, and possible causes that have been the subject of serious studies:

Inflammatory bowel disease;

Pesticides;

Air pollution and proximity to freeways;

Maternal thyroid issues;

Autoimmune disorders;

Induced labor;

Preterm birth;

Fever;  

Birth by cesarean section;

Anesthesia during cesarean sections;

Maternal and paternal obesity;

Maternal diabetes;

Maternal and paternal age;

Grandparental age;

Maternal post-traumatic stress disorder;

Maternal anorexia;

Smoking during pregnancy;

Cannabis use during pregnancy;

Antidepressant use during pregnancy;

Polycystic ovary syndrome;

Infant opioid withdrawal;

Zinc deficiency;

Sulfate deficiency;

Processed foods;

Maternal occupational exposure to solvents;

Congenital heart disease;

Insufficient placental allopregnanolone.

Estrogen in the womb;

Morning sickness;

Paternal family history;

Parental preterm birth;

Antiseizure meds

A release from the University of Utah:

When and where are often vital clues for epidemiologists, the medical detectives who help solve the underlying mysteries of disease. The technique dates back to at least 19th century London, where a physician named John Snow mapped cholera deaths and traced the source of the outbreak to a single well in the city. Once the well was closed, the epidemic ended.


Taking this idea to a new level, University of Utah Health scientists, using a unique combination of geographic and population data, recently concluded that when and where parents and grandparents of Utah children were born and raised could contribute to an increased risk of autism among their offspring.

The scientists think this new approach could be used to explore time and space aspects of any disease where family pedigree information is available.

The study, published in the International Journal of Health Geographics, is among the first to assess the influence of time and space (when and where) across generations on the increased risk of autism. In time, the researchers say, this finding could lead to the identification of environmental factors, such as exposure to pollutants, that could have disruptive effects on genetic information passed between generations.

"Looking back at families and where and when they lived helped us detect clusters of individuals who seem to have a higher subsequent risk of autism among their descendants," says James VanDerslice, an environmental epidemiologist in the Division of Public Health at U of U Health and senior author of the study. "Knowing that the parents and grandparents of these children with autism shared space and time brings us closer to understanding the environmental factors that might have influenced this health outcome."

Epidemiological studies across generations are difficult and time-consuming, says Rebecca Richards-Steed, the study's principal investigator and graduate student in the Department of Geography at University of Utah. In fact, most of these studies have been done in animals, which reproduce quickly and can be followed for several generations in a shorter time span than humans.

Using existing technology in a new way, VanDerslice and Richards-Steed circumvented this drawback by looking at existing data available for parents and grandparents to identify places and time periods that may be associated with risk factors that increased the risk of disease in subsequent generations.

The researchers used the Utah Registry of Autism and Developmental Disabilities, in conjunction with the Utah Population Database (UPDB), to identify parents and grandparents of children born between 1989 and 2014 who have autism.

Birth certificates, driver's license information, and census and medical records in the UPDB helped the scientists track when and where these individuals lived over time. The UPDB is one of the few databases worldwide to include this type of information.

For comparison, they randomly selected parents and grandparents of children in the UPDB database who were not diagnosed with autism. Names of the individuals were withheld from the researchers.

In all, VanDerslice and colleagues pinpointed where 7,900 parents and 31,600 grandparents were born and raised. They identified 20 key clusters, or groupings, scattered across the state. After analysis, 13 of the 20 clusters—nine among grandparents and four among parents—were associated with an elevated risk of autism in their children or grandchildren. In particular, descendants of paternal grandparents were about three times more likely to have autism than expected.

"What we were seeing fits in with current scientific understanding of how paternal genetics is key to evolutionary change and adaptation," Richards-Steed says. "So, it is quite possible in the case of autism that a signal, shaped in part by environmental experiences, is coming from the paternal lineage, which is being passed down through the family."

Seven clusters, all in rural areas, had a low risk of an association between autism and family lineage.

"We're really not sure why some rural areas seemed to have what might be called a protective effect," Richards-Steed says. "It's certainly possible that parents and grandparents living in urban areas had different environmental exposures or experiences."

"What we can say, based on our findings, is what we are being exposed to now is probably not just affecting us or even our children but maybe even our children's children."

Moving forward, the researchers will delve deeper into the factors, including lifestyle, that could help explain these results.

"Evidence shows our environment has a deterministic effect on our growth and development, which includes the germline cells we carry for the next generation," VanDerslice says. "Examining the shared space and time of our ancestors may give us clues about the environmental factors that may lead to biological changes that increase the risk of disease in future generations. "

The scientists think this new approach could be used to explore time and space aspects of other conditions where family pedigree information is available.

"This idea isn't limited to autism," Richards-Steed says. "It can be applied to any disease and could enhance our ability to understand how a confluence of genetic and environmental factors can have long-term health consequences for families."


More information: Rebecca Richards Steed et al, Evidence of transgenerational effects on autism spectrum disorder using multigenerational space-time cluster detection, International Journal of Health Geographics (2022). DOI: 10.1186/s12942-022-00313-4