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Thursday, November 30, 2023

Disabled STEM PhDs Make Less Money

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

A release from Johns Hopkins:
New research from the Johns Hopkins Disability Health Research Center at the School of Nursing suggests that PhD graduates in science, technology, engineering, and medicine in the U.S. who were born with disabilities or became disabled before age 25 earn $14,360 less per year in academia than those without disabilities. They are also underrepresented at higher faculty levels—such as deans and presidents—and in tenured positions, according to the study published Nov. 27 in Nature Human Behaviour.

"We're identifying the barriers to inclusion so we can dismantle them," says Bonnielin Swenor, an author of the study. Swenor is also a faculty member at the Johns Hopkins School of Nursing and founder and director of the center. "Combating the disparities will take structural transformation."
Previous research has revealed pay disparities and unequal representation in STEM for women and underrepresented racial minorities in the U.S.; research has also identified that scientists and engineers with disabilities, regardless of the age of disability onset, are more likely to be unemployed than the overall U.S. labor force. However, data on disparities for STEM doctoral recipients with disabilities have been lacking.

Swenor and colleagues examined evidence for differences in salary and representation of STEM PhD grads with disabilities before 25 years of age and those with disabilities at 25 years of age or later, compared to doctorate recipients without disabilities. The authors used national data on nearly 1.15 million U.S. research doctorate recipients who received degrees between 1973 and 2017. Of their sample, 704,013 individuals were still working in STEM, including 36,807 individuals who reported disabilities experienced in later life and 20,544 people who reported disabilities from early in life. Within this subset, they matched individuals by socioeconomic background, job, and degree-related characteristics.

Across all employment sectors, STEM PhD graduates with disabilities earned $10,580 less per year than their counterparts without disabilities, and in academia, they earn $14,360 less. The authors also found those with disabilities were underrepresented at higher faculty levels, such as deans and presidents, and in tenured positions. The authors call for structural transformations to combat these disparities.

Wednesday, November 29, 2023

Vax Rate Ticks Downward

 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

Tanya Lewis and Josh Fischman at Your Health, Quickly, a Scientific American podcast series:

Lewis: COVID gave a huge boost to the antivax movement. But vaccination rates for many childhood diseases were starting to erode long before that.

Fischman: That’s right—it started with people like Jenny McCarthy and Robert F. Kennedy Jr. spreading false information about the effects of vaccines and autism, and got amplified from there. It’s really become an organized movement now.

 Lewis: Absolutely. So it may not surprise you that during the pandemic, the number of kids getting routine vaccinations fell even more, leaving them more vulnerable to these diseases.

Fischman: That’s definitely not good. The last thing we need is another measles or whooping cough outbreak.

Lewis: Exactly. And some of these diseases can cause serious disability or even death—remember polio?

Fischman: My parents remember it vividly. Kids on crutches, horror stories of iron lungs, people fearing summer because that’s when cases peaked. And Jonas Salk became a huge hero because of his polio vaccine in the 1950s.

Lewis: Right! It was a scary time. Thanks to vaccines, polio was nearly eradicated worldwide, except for Afghanistan and Pakistan. In August 2022, there was a case of polio in Rockland County, New York—the first U.S. polio case since 2013. The virus was also found circulating in wastewater.

Vaccination rates for polio in the Americas have dropped to about 80 percent—much lower than the 95 percent threshold public health officials say is needed.

Fischman: And it’s not just polio, right?

Lewis: Right—it’s also diseases like measles, mumps and rubella, or tetanus, diphtheria and pertussis. The Centers for Disease Control and Prevention just came out with a report saying that between 2019 and 2022, vaccination rates for many childhood diseases dropped from 95 percent to around 93 percent nationwide. Idaho had the lowest vaccination rate, at just over 81 percent.

Fischman: A change from 95 to 93 percent doesn’t sound like a huge drop. But for diseases like measles, which are extremely contagious, its a big deal. Anything less than 95 percent could lead to an outbreak.

Tuesday, November 28, 2023

How to Dance in Ohio

In The Politics of Autism, I discuss depictions of ASD in popular culture.  There is a need for authentic casting.

Eril Piepenburg at NYT:
To get to Amigo Family Counseling, I walked down beige hallways on the first floor of a building in a ho-hum Columbus, Ohio, office park a short walk from a Bob Evans restaurant.

The center’s clinical director, Dr. Emilio Amigo, waved at me once I got inside. Behind a closed door I heard the voices of his clients — autistic young adults from mostly working- and middle-class central Ohio families — boisterously chatting about their Friday night plans.

I was there to talk about “How to Dance in Ohio,” a new Broadway musical that features Dr. Amigo and seven of his autistic clients as characters. The show — pop in score and sensibility — is based on Alexandra Shiva’s 2015 documentary, which follows Dr. Amigo and many more of his clients as they navigate life and eagerly, but anxiously, prepare for a spring formal. (The musical is in previews at the Belasco Theater in Manhattan, where it is scheduled to open on Dec. 10. The documentary is on Max.)

In a Broadway first, openly autistic actors are playing the autistic characters, in this case seven. All those actors are making their Broadway debuts. (Non-autistic actors portray other people, including Dr. Amigo, played by Caesar Samayoa.) Ashley Wool, who plays Jessica, hopes the casting puts to rest a misconception about autistic actors: That if there are any, they must be less talented or expressive.


Openly autistic actors performing onstage is not common, but it’s also not new. In 2017 at Syracuse Stage, the autistic actor Mickey Rowe played the autistic teenager at the center of the Tony Award-winning playThe Curious Incident of the Dog in the Night-Time.”

But that was an exception. Of the people I spoke with, the best grade anyone gave Broadway when it came to autism and accessibility was a D+.

“How to Dance in Ohio” is aiming for an A. The production hired Ava Xiao-Lin Rigelhaupt, who is on the autism spectrum, as its autistic creative consultant to make sure the script is authentic about autism and that rehearsal rooms are accessible, among other concerns. The production is working on several front-of-house accessibility efforts, including cool-down spaces. And while the production is sensory friendly, the T.D.F. performance in January will offer further accommodations, like keeping on the house lights during the performance.

Monday, November 27, 2023

Disability Inclusion

 In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities. Many posts have discussed programs to provide them with training and experience.

A release from Accenture:

Companies that lead in disability inclusion drive more revenue, net income and profit, according to a new research report from Accenture (NYSE: ACN) in partnership with Disability:IN and the American Association of People with Disabilities (AAPD).

Building on the 2018 landmark report on disability inclusion at work in the United States, the follow-up research, titled “The Disability Inclusion Imperative,” explores disability inclusion amid major technological advances, changes in geopolitical dynamics and the effects of a global pandemic across 346 companies in the US. These companies participated in the Disability Equality Index (DEI), a leading global benchmarking tool that scores businesses on their disability inclusion policies and practices.


The report identifies that, over the last five years, the business case for hiring persons with disabilities has become even stronger. Specifically, companies that have led on key disability inclusion criteria over that time saw 1.6 times more revenue, 2.6 times more net income and 2 times more economic profit than other companies in the DEI. Further, leaders are more likely to outperform industry peers in productivity by 25 percent.

Since 2018, the number of people with disabilities in the workforce has swelled from 29 percent to 37 percent with most progress occurring since February 2020 at the beginning of the pandemic. This increase can be attributed to increased work opportunities at home—making it easier for people with disabilities to participate in the workforce and an increased awareness and understanding of digital accessibility and inclusion in the hiring process. Additionally, newer and emerging technologies are excellent sources to advance disability inclusion, including AI-powered platforms.


Additional Accenture research has showed that 76 percent of employees with disabilities do not fully disclose their disabilities at work. Further, the 2023 DEI report found that only 4.6 percent of employees self-identify their disability status with employers. When the US Securities and Exchange Commission (SEC) began requiring companies to provide a human capital overview in their filings, voluntary mentions of disability inclusion at work are notable. Organizations can ensure that disability inclusion remains a fundamental aspect of their overall sustainability and responsible business practices by incorporating ESG principles into their accountability frameworks and publicly sharing outcomes.

Sunday, November 26, 2023

Costs and Benefits of an Autism Diagnosis

In summary then, receiving an autism diagnosis can act as a permission slip, for belonging in the autistic community, for relief from judgement (by self and others), and for access to tailored services and workplace adjustments. However, an autism diagnosis is a double-edged sword and may also come with costs (Ruiz Calzada et al., 2012). For example, autistic people diagnosed in adulthood have reported their experience of being diminished in others’ eyes, especially in the workplace (Romualdez et al., 2021). Such negative experiences may be exacerbated if the thing that drove them to seek a diagnosis was some sort of crisis: mental ill-health or burnout. As a result, many autistic people choose not to disclose their identity at work, fearing negative effects (not without reason) and thus missing out on some of the potential practical benefits (Thompson-Hodgetts et al., 2020). Most strikingly, recent research reports that one-third of autistic doctors had disclosed to no one at all at work (Shaw et al., 2023). Another example of a diagnosis having the precise opposite of the desired effect occurs in mental health services which require a primary or solitary psychiatric diagnosis such that an autism diagnosis becomes an exclusion criterion for access.

Saturday, November 25, 2023

Aaron Sibarium

At POLITICO, Marc Novicoff profiles Aaron Sibarium staff writer at the Washington Free Beacon:
When he was 4, Sibarium was diagnosed with autism. As he wrote in a column for the Yale Daily News, “I flapped my hands, compulsively and uncontrollably, until I was almost 6 years old. I barely spoke until I was 3. I had no true friends until I was 7.” His parents, he says, “hired a coterie of experts to improve my speech, motor and social skills and eventually enrolled me in a school for students with special needs.” By age 7, “a team of child psychologists” told his parents he no longer fit the criteria of autism, and by age 9, he was “pronounced autism-free.” 

Today, though, he says some of those traits persist, particularly a “kind of mild disagreeableness and willingness to just argue about stuff and not really care that much what others think.” He also has no trouble turning a single question into five or ten minutes of uninterrupted speech; he sometimes laughs for longer than seems appropriate; and he often closes his eyes for 5, or 10, or 15 seconds while talking in depth about things. He says he’s got a “lust for order,” although that cannot be observed in his apartment, which is crammed with old papers and open envelopes.


Sibarium seems to enjoy his life at the Free Beacon, poking mainstream, liberal-leaning institutions with small questions and getting big stories. And while he hasn’t ruled out becoming the star op-ed columnist every young conservative dreams about being (always Ross Douthat, sometimes Christopher Caldwell), he’s just fine for now being “a normal, nerdy kid” — the kind who thinks the upcoming Modern Warfare video game is going to be “freaking cool” and the kind who takes himself to pet stores to play with the birds because “the plumage is really beautiful.”   

Friday, November 24, 2023

COVID and Immigrant Parents

 In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges were especially tough for immigrant families during the pandemic.

Zhanag, H. (2023). The Mental Stress of Immigrant Parents of Children with ASD in the United States During the COVID-19 Pandemics: A Study from Ecological System Perspective. International Journal of Special Education, 38(2), 1–13.


Given that researchers interested in the experiences of minority parents of children with special needs sometimes recruit participants solely based on their ethnic origin, despite the socioeconomic and political divide between immigrant and native-born minority parents, little is known about the experiences of immigrant parents in the context of the global pandemic beginning in 2019, even though academics have seen major changes in family life in the context of COVID -19 constraints. By examining through an ecological system perspective and based on the findings of a qualitative interpretive phenomenological analysis(IPA) that sought to understand the experiences of 13 immigrant parents of children with ASD advocating for their children, who immigrated from 7 different countries and regions, this article discusses the mental stress experienced by immigrant parents during the pandemic. The findings about mental stress included coping with mental stress caused by being separated from family support networks, increased miscommunication caused by the shift from in-person to online communication, and increased workload as a home-based intervention provider due to practitioner shortages during the pandemic. This study implies that even though immigrant parents have demonstrated amazing resilience in dealing with the pandemic-related environment, external social support is urgently needed to assist them in managing the impact of pandemic-related stresses and concerns.

Wednesday, November 22, 2023

RFK and the Kennedy Name

 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 wrongA leading anti-vaxxer is presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.

He is now running for president as an independent.  Why is anybody paying attention?

One clue: today is the 60th anniversary of the JFK assassination. According to Gallup, 90 percent of Americans approve of the job he did (even if few can actually name anything that he accomplished).  

Robert F. Kennedy Jr., the political scion with the famous last name who's running as an independent for president, is also infamous for his stances against vaccines.

Vaccines are safe and effective and have been credited with stopping the spread of diseases like measles, mumps and rubella, polio and global pandemics. Despite the solid evidence, people like RFK Jr. — with no expertise and who refuse to listen to experts — have spread disinformation about them, playing on false conspiracy theories.

He's repeatedly falsely claimed that vaccines are not "safe and effective" and he even said, among other things, "I see somebody on a hiking trail carrying a little baby and I say to him, better not get them vaccinated."

And yet, he claimed at a congressional hearing in July: "I have never been anti-vax. I have never told the public to avoid vaccination."  [See video of his contradictory statements.[

That's an obvious lie. But it might indicate Kennedy — who is the son of Robert F. Kennedy and the nephew of former President John F. Kennedy — knows that an anti-vaccine stance is not politically popular outside the segment that deeply, and falsely, disbelieves in their effectiveness.

Despite that, he's made similar statements recently on the campaign trail before friendly crowds.

Tuesday, November 21, 2023

Infertility and Autism

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

 Infertility and Risk of Autism Spectrum Disorder in Children

Maria P. Velez, MD, PhD1,2; Natalie Dayan, MD, MSc3,4; Jonas Shellenberger, MSc2; et alJessica Pudwell, MSc, MPH1; Dia Kapoor, MPH1; Simone N. Vigod, MD, MSc2,5,6; Joel G. Ray, MD, MSc2,7

JAMA Netw Open. 2023;6(11):e2343954. doi:10.1001/jamanetworkopen.2023.43954

Key Points

Question  Is there an association between infertility, its treatment, and autism spectrum disorder (ASD) in the child?

Findings  In this cohort study of 1.3 million children from Ontario, Canada, the incidence rate (per 1000 person-years) of ASD was 1.9 among children in the unassisted conception group, 2.5 in the subfertility group, and 2.7 after fertility treatment. There was a slightly higher risk of ASD in children born to individuals with infertility, which may be partly mediated by obstetrical and neonatal factors.

Meaning  These findings suggest broader strategies are needed to decrease adverse pregnancy outcomes in patients with infertility and to optimize child neurodevelopment.

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

  1. Inflammatory bowel disease;
  2. Pesticides;
  3. Air pollution and proximity to freeways;
  4. Maternal thyroid issues;
  5. Autoimmune disorders;
  6. Induced labor;
  7. Preterm birth;
  8. Fever;  
  9. Birth by cesarean section;
  10. Anesthesia during cesarean sections;
  11. Maternal and paternal obesity;
  12. Maternal diabetes;
  13. Maternal and paternal age;
  14. Grandparental age;
  15. Maternal post-traumatic stress disorder;
  16. Maternal anorexia;
  17. Smoking during pregnancy;
  18. Cannabis use during pregnancy;
  19. Antidepressant use during pregnancy;
  20. Polycystic ovary syndrome;
  21. Infant opioid withdrawal;
  22. Zinc deficiency;
  23. Sulfate deficiency;
  24. Processed foods;
  25. Maternal occupational exposure to solvents;
  26. Congenital heart disease;
  27. Insufficient placental allopregnanolone.
  28. Estrogen in the womb;
  29. Morning sickness;
  30. Paternal family history;
  31. Parental preterm birth;
  32. Antiseizure meds
  33. Location of forebears
  34. Lithium
  35. Aspartame
  36. BPA
  37. Brain inflammation
  38. Maternal asthma

Sunday, November 19, 2023

Disability in Hollywood

In The Politics of Autism, I discuss depictions of ASD in popular culture

UCLA report on diversity in movies:

Comprising at least 26 percent of the United States population, adults with a disability were underrepresented in front of the camera in top films in 2022.

  •  9.1 percent of theatrical film leads
  • 6.1 percent of streaming film leads
  • 5 percent of total theatrical film actors
  • 4.2 percent total streaming film actors 
UCLA report on diversity in TV:

Comprising at least 26 percent of the United States population,  adults with a disability were severely underrepresented in front of the camera across all three platforms in 2021-22.

  • 12.2 percent of broadcast scripted leads
  • 9.9 percent of cable scripted leads
  • 5.6 percent of digital scripted leads

Saturday, November 18, 2023

Restraint, Seclusion, Discipline, Arrest

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

U.S. Department of Education Office for Civil Rights, "A First Look: Students’ Access to Educational Opportunities in U.S. Public Schools."  Excerpts:

  •  Students with disabilities served under IDEA represented 14% of total K-12 student enrollment, but 32% of students mechanically restrained, 81% of students physically restrained, and 75% of students secluded.
  • Preschool children with disabilities served under IDEA represented 24% of preschool enrollment, but 34% of preschool children who received one or more out-of-school suspensions and 62% of preschool children who were expelled.
  • Students with disabilities represented 17% of total K-12 student enrollment, but 24% of students who received one or more in-school suspensions, 29% of those who received one or more out-of-school suspensions, and 21% of those who received expulsions.
  • Students with disabilities served under IDEA represented 14% of total K-12 student enrollment, but 22% of students referred to law enforcement and 22% of students subjected to school-related arrests. 
  • Students with disabilities served only under Section 504 represented 3% of total K-12 student enrollment, but 5% of students referred to law enforcement and 6% of students subjected to school-related arrests. 

Friday, November 17, 2023

Advice to Autism Parents

 In The Politics of Autism, I write that autism parents must be advocates for their children, who in turn must grow up to be advocates for themselves.

Very quickly, parents will learn that there is no one-stop shopping in the autism world.  Various providers offer various services, with various levels of support from the government, which largely depends on where one lives. Wherever they turn, parents run into red tape.  “Trying to obtain services for a special-needs child is a never-ending process,” one mother told a Tennessee journalist. “Taking care of the children is much simpler than taking care of the paperwork.”

Paolo Zialcita at Colorado Public Radio:

As most Americans will tell you, navigating the healthcare system is hard. For parents of children with disabilities, it can be even harder. 

Jenee Allen, the mother of autistic 5-year-old Beckett, said navigating Health First Colorado, the state’s Medicaid system, is like stumbling in the dark.

“If it was more streamlined, we wouldn't spend so many hours just trying to figure this out for our kiddos,” Allen said.

Allen and other parents said there’s no clear guide to getting pediatric disability services through the state’s Medicaid program. While large, engaged parent communities exist online, Allen said, every parent seems to have a different experience.

“I feel like I understand the disability process now,” she said. “However, if you put the information out there, even on the autism groups I'm on, everyone will kind of have a different answer and so you wonder if there's multiple pathways to get there and you just found a pathway.”

Multiple parents who spoke with CPR News agreed. But they all identified a few things that all parents can do to understand the system and get their children the care they need.

Allen’s tip was simple: Be a diligent note taker.

“Keep all your records. Write down who you talk to,” she said. “If you find a phone number that you connect to, only call that number and keep records of all your emails and all your phone calls so that no one can … say something didn't happen.”

Thursday, November 16, 2023

Neighborhood Disadvantage and Autism Diagnosis

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

Xin Yu and colleagues have a report at JAMA Psychiatry titled "Neighborhood Disadvantage and Autism Spectrum Disorder in a Population With Health Insurance."

Key Points

Question Is neighborhood disadvantage associated with a higher likelihood of the diagnosis of autism spectrum disorder (ASD) in a population with health insurance?

Findings In a cohort study that included 318 372 children with health insurance, neighborhood disadvantage at birth was associated with a higher likelihood of ASD diagnoses, independent of maternal education.

Meaning Providing resources for early intervention and family support in communities with a higher likelihood of ASD is important, while maintaining investment for universal screening.

Importance Family socioeconomic status has been associated with autism spectrum disorder (ASD) diagnoses. Less is known regarding the role of neighborhood disadvantage in the United States, particularly when children have similar access to health insurance.

Objective To evaluate the association between neighborhood disadvantage and the diagnosis of ASD and potential effect modification by maternal and child demographic characteristics.

Design, Setting, and Participants This cohort study examined a retrospective birth cohort from Kaiser Permanente Southern California (KPSC), an integrated health care system. Children born in 2001 to 2014 at KPSC were followed up through KPSC membership records. Electronic medical records were used to obtain an ASD diagnosis up to December 31, 2019, or the last follow-up. Data were analyzed from February 2022 to September 2023.

Exposure Socioeconomic disadvantage at the neighborhood level, an index derived from 7 US census tract characteristics using principal component analysis.

Main Outcomes and Measures Clinical ASD diagnosis based on electronic medical records. Associations between neighborhood disadvantage and ASD diagnosis were determined by hazard ratios (HRs) from Cox regression models adjusted for birth year, child sex, maternal age at delivery, parity, severe prepregnancy health conditions, maternal race and ethnicity, and maternal education. Effect modification by maternal race and ethnicity, maternal education, and child sex was assessed.

Results Among 318 372 mothers with singleton deliveries during the study period, 6357 children had ASD diagnoses during follow-up; their median age at diagnosis was 3.53 years (IQR, 2.57-5.34 years). Neighborhood disadvantage was associated with a higher likelihood of ASD diagnosis (HR, 1.07; 95% CI, 1.02-1.11, per IQR = 2.70 increase). Children of mothers from minoritized racial and ethnic groups (African American or Black, Asian or Pacific Islander, Hispanic or Latinx groups) had increased likelihood of ASD diagnosis compared with children of White mothers. There was an interaction between maternal race and ethnicity and neighborhood disadvantage (difference in log-likelihood = 21.88; P < .001 for interaction under χ24); neighborhood disadvantage was only associated with ASD among children of White mothers (HR, 1.17; 95% CI, 1.09-1.26, per IQR = 2.00 increase). Maternal education and child sex did not significantly modify the neighborhood-ASD association.

Conclusions and Relevance In this study, children residing in more disadvantaged neighborhoods at birth had higher likelihood of ASD diagnosis among a population with health insurance. Future research is warranted to investigate the mechanisms behind the neighborhood-related disparities in ASD diagnosis, alongside efforts to provide resources for early intervention and family support in communities with a higher likelihood of ASD.

Wednesday, November 15, 2023

Anti-Science and the GOP

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 measles and COVID-19.

UnfortunatelyRepublican 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. 

Michael Hiltzik at LAT:
“As both a pediatrician-scientist who develops vaccines and a parent of an adult daughter with autism,” [Dr. Peter] Hotez writes, “I have had a front-row seat on the modern anti-vaccine movement in America.”

The historical roots of the anti-science movement date back more than 100 years, Hotez writes, to when authoritarian regimes such as Stalin’s recognized that discrediting scientific experts assisted their path to personal power. Its appeal to the modern Republican Party has much to do with economics — challenging the scientific consensus on global warming, for example, allows the GOP to serve the anti-regulation interests of its Big Business patrons.

The anti-vaccine movement was in many respects a natural fit. Its invocation of shibboleths such as “medical freedom” and “health freedom” — coded justifications for opposition to vaccine mandates — led to its getting “picked up by the Republican Tea Party in Texas,” Hotez says.
“It was mutually reinforcing,” he told me. “The anti-vaccine groups were getting attention and PAC money that they never had before, and the far right got a new set of adherents and a new faux outrage to rally the base. It just became part of the canon.”

The anti-vaccine and anti-science movements exploit and amplify the lay public’s ignorance about the scientific method and the technical aspects of how vaccines work.

Brian Kennedy and Alex Tyson at Pew:

Declining levels of trust in scientists and medical scientists have been particularly pronounced among Republicans and Republican-leaning independents over the past several years. In fact, nearly four-in-ten Republicans (38%) now say they have not too much or no confidence at all in scientists to act in the public’s best interests. This share is up dramatically from the 14% of Republicans who held this view in April 2020. Much of this shift occurred during the first two years of the pandemic and has persisted in more recent surveys.
Confidence in scientists has also moved lower among Democrats. The share of Democrats and Democratic-leaning independents with a great deal of confidence in scientists – which initially rose in the pandemic’s first year – now stands at 37%, down from a high of 55% in November 2020. But unlike Republicans, a large majority of Democrats (86%) continue to express at least a fair amount of confidence in scientists to act in the public’s best interests. The overall differences in partisan views remain much more pronounced today than they were prior to the coronavirus outbreak.

One of the starkest illustrations of polarization in views of science is the drop in the share of Republicans who view the societal impact of science positively.

Fewer than half of Republicans (47%) now say that science has had a mostly positive effect on society. In 2019, 70% of Republicans said that science has had a mostly positive effect.

A majority of Democrats (69%) continue to say science has had a mostly positive effect on society, though this share is 8 points lower than it was in 2019.

Republicans were largely critical of the country’s response to the coronavirus outbreak. For instance, large shares said too little priority was given to respecting individuals’ choices, supporting businesses and economic activity, and meeting the needs of K-12 students. In addition, many Republicans felt that public health officials’ personal views had too much influence on policy and that officials were too quick to dismiss views that challenged their scientific understanding.


Tuesday, November 14, 2023

Adult Autism Health Resources

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 prospectsThough 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.
Studies show that autism services can be complicated, creating difficulties for autistic people and their families

Tonya Phillips at Harvard Medical School:
Thanks to the generous financial support of the Nancy Lurie Marks Family Foundation (NLMFF), Harvard Medical School has launched the Adult Autism Health Resources initiative. Focused on improving autism care and the lives of autistic adults and their families, the project aims to educate clinicians, caregivers, and self-advocates in leading meaningful change across health care systems.

While most people are aware of the increasing number of autistic children, they may not understand how many autistic people there are in the current adult population. Christopher McDougle, MD, the Nancy Lurie Marks Professor in the Field of Autism at Harvard Medical School, faculty director of the Adult Autism Health Resources initiative, and director of the Lurie Center for Autism at Massachusetts General Hospital explains that “autistic individuals may live as long as the rest of us but once they graduate high school they no longer qualify for many services or receive guidance about ongoing medical care. This initiative is a way to acknowledge the existing population of autistic adults and to inform the world that they need access to quality medical care in the same way that neurotypical individuals do. It’s a wakeup call.”

Sarah T. Campbell, a patient/family advocate for the initiative and the parent of an autistic adult, was brought on board to be the voice of lived experience. She created the Patient Experience Board, a virtual classroom site where group members could engage in discussions, pose questions, and share their thoughts on topics designed to inform the clinician course and website content. Campbell also identified clinicians and experts who might contribute to the Adult Autism Health Resources project.


The Adult Autism Health Resources initiative keeps clinicians and autistic adults and their families up to date through two platforms:
Clinical Care for Autistic Adults

Clinical Care for Autistic Adults is a self-paced, online course that offers a fundamental understanding of autism spectrum disorder and best practices involved in diagnosing, treating, and coordinating adult health care. Anyone who seeks to provide quality care to this population will develop more confidence in their ability to deliver patient-centered, equitable care.

In addition, physicians, nurses, social workers, and physician assistants who complete the course will have the opportunity to earn HMS continuing education credits.

Beth Malow, MD, MS, professor of neurology and pediatrics and the director of the Sleep Disorders Division at Vanderbilt University Medical Center, is a key member of the Adult Autism Health Resources initiative.

"I’m a sleep specialist who sees children and adults on the autism spectrum,” she says. “Clinicians who want to get a better understanding of sleep problems in autistic people are an ideal audience for the Clinical Care for Autistic Adults course, and will find the materials and resources to be informative.”
Adult Autism Health Resources

The Adult Autism Health Resources patient and family website provides information and links to resources that will help autistic adults, their families, and caregivers navigate the health care system, prepare for later life transitions, communicate with providers, and meet the unique challenges of aging with autism.

"Families can use these resources to learn about areas they can advocate for and assist with, and to provide support for their autistic family member,” says Janice Jutras, special projects development editor, for the Adult Autism Health Resources website. “These supports range from collaborating with clinicians to taking ownership of crucial financial or insurance paperwork.”

"An effort was made from the start to involve autistic adults and their parents as consultants,” adds McDougle. “They reviewed the content and have input in the way it is presented.”