Health Care Costs for Children with Disabilities

The Politics of Autism includes an extensive discussion of insurance and Medicaid services for adults with intellectual and developmental disabilities.

Houtrow AJ, Shearer CS, McKernan G, Kuhlthau K, Agrawal R. Health Care Cost Concerns and Hardships for Families of Children With Disabilities. JAMA Netw Open. 2025;8(4):e257826. doi:10.1001/jamanetworkopen.2025.7826

Introduction

Families of children with disabilities report more health care–related financial problems than families of children without disabilities.1 Their families are also more likely to report inadequate insurance coverage.2,3 We used the National Health Interview Survey (NHIS) to quantify the hardships of health care costs to families of children with disabilities in terms of difficulty paying their child’s medical bills, concerns about paying their child’s health care bills, and their child’s care delayed or forgone due to cost.

Methods

Data from the 2019-2022 NHIS for children aged 5 to 17 years were pooled for these analyses (eAppendix in Supplement 1). The NHIS is a nationally representative cross-sectional survey of the noninstitutionalized US population conducted by the National Center for Health Statistics.4 Information about the household’s sample child was collected via computer-assisted personal interview with a parent or guardian knowledgeable about the child’s health and disabilities, if present.5 Statistical analysis was performed from December 2024 to February 2025. Prevalence estimates and 95% CIs were calculated with survey weights applied. The χ2 test was applied to determine within-group prevalence differences, and the Cramer V was calculated for effect size estimates. The main outcome was the presence of health care–related financial hardship measured by caregiver report of difficulty paying the child’s medical bills, concerns about paying the child’s medical bills, delayed or forgone medical care due to cost and/or delayed or forgone prescriptions due to cost. Outcome estimates were adjusted for sociodemographic factors with missing data deleted. All P values were from 2-sided tests, and results were deemed statistically significant at P < .05. All analyses were conducted using R software, version 4.4.1. This secondary analysis falls under the exempt category for the University of Pittsburgh institutional review board because the data are publicly available. The study follows the AAPOR reporting guideline for survey studies.

 Results

Among the 22 670 children aged 5 to 17 years in the analytic sample representing 53 586 children annually, the overall prevalence of disability among children aged 5 to 17 years was 17.4% (95% CI, 16.7%-18.1%) (Table 1). The most commonly reported disabilities were emotional or behavioral (10.8% [95% CI, 10.2%-11.3%]). Disability prevalence varied across sociodemographic characteristics, with generally weak associations (Table 1). Children with disabilities were more likely to have public insurance (adjusted odds ratio [AOR], 1.42 [95% CI, 1.26-1.60]) or a combination of private and public insurance (AOR, 2.79 [95% CI, 2.10-3.71]) than their peers without disabilities (Table 2). Families of children with disabilities were almost twice as likely to experience any of 6 financial hardships than families of children without disabilities (22.3% [95% CI, 22.3%-20.7%] vs 12.6% [95% CI, 12.0%-13.3%]; AOR, 1.91 [95% CI, 1.70-2.14]). Families of children with disabilities had more difficulty paying medical bills (AOR, 1.97, 95% CI 1.76-2.21) and were more likely to be very worried about medical expenses (AOR, 1.35 [95% CI, 1.18-1.55]). These families also experienced higher rates of delayed and forgone care due to cost compared with families of children without disabilities.

Discussion

This study contributes to the existing literature by identifying that while insurance coverage is higher among children with disabilities, their families had higher adjusted odds for all of the financial hardships evaluated, compared with families of children without disabilities. This finding suggests that insurance is inadequate for disabled children. A key component of adequate insurance is the lack out-of-pocket expenses or having out-of-pocket expenses that were usually or always reasonable, such as for copays and coinsurance for diagnostic tests, visits, services, and treatments.3 Proposed cuts to the federal contribution to Medicaid6 would likely exacerbate the financial distress of these families. These data demonstrate a need to structure health insurance policies to ensure that children with disabilities have their needed medical care covered in a way that is not financially burdensome to families.3 This study is limited by the cross-sectional nature of the survey design, which does not allow for assessment of causality. Nonetheless, recognizing that nearly one-fourth of families of children with disabilities face financial hardships, worry about the cost of health care, and/or delay or forgo health care for their children with disabilities should be a call to action to improve insurance adequacy.

Autism and Rural Health Care

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  Those challenges can be especially daunting for those living in rural areas.

 Zhang, E., Alduraidi, W., Snyder, M., Kaiser, E., Hunley, S., Davis, A., Nelson, E.-L., & Cheak-Zamora, N. (2025). Pilot rural–urban comparison of health care experiences among autistic adolescents and young adults. Autism, 0(0). https://doi.org/10.1177/13623613251337506.

Lay abstract

Health care can be especially challenging for young autistic people, particularly when they move from child to adult health care. Our pilot study looked at whether the health care experiences are similar or different for autistic young people living in rural areas versus urban areas. We surveyed 180 autistic people aged 14–25 years about their health care experiences, including 96 from urban areas and 84 from rural areas. The survey asked about their experiences in finding providers, getting appointments, working with providers, and how well their providers understood autism. The results showed that rural young autistic people face some unique challenges. They often had to travel farther to find providers. They were more likely to work with one provider and report that their providers did not understand autism well compared to urban young autistic people, who often could choose between different providers. Interestingly, both rural and urban participants felt similarly about how well they could talk with their providers once they started working with them. Dental care stood out as particularly challenging among different health care services—rural participants had trouble finding dentists who accepted their insurance, while urban participants were more likely to have no dental insurance at all. These findings highlight important areas for improvement. Rural communities need more autism-trained providers and better access to nearby health services. In urban areas, addressing gaps in insurance coverage is critical. Together, we should improve care for all young autistic people, no matter where they live.

Physicians Are Poorly Trained to Deal with Autism

The Politics of Autism discusses health care, and explains that autism services can be complicated, creating difficulties for autistic people and their families.  Sometimes medical professionals lack sufficient training in ASD.

Cassie Shortsleeve at Medscape:

Despite the need for specialized training, no accreditation standards currently mandate autism education in medical school curricula. A small survey published last year found that only 16% of medical students had received formal training in neurodivergence; 97% expressed a desire for more.Maura Sullivan

Too often, medical students graduate with little education and understanding of proper care for people with autism, explains Maura Sullivan, CEO of The Arc of Massachusetts; it’s a gap that contributes to medical access issues for patients with autism, an increase in health disparities, and more.

...“A little over half of schools have at least some elements of disability education, but it’s not necessarily autism education,” [Dr. Dorothy] Tolchin said....
...
Research in BMJ Open found that only 25% of primary healthcare providers reported high confidence in communicating with adult patients with autism or identifying and making necessary accommodations.


When physicians in training don’t receive adequate education about caring for patients with autism, there’s a wide range of consequences.

For one, there are access issues for patients. In a survey of 714 US physicians, only 40% felt equipped to treat patients with autism and intellectual and developmental disabilities. “Because physicians don’t feel competent, they are not willing to treat,” Sullivan said. “These attitudes can lead to fear or concerns around providing care for these patients.”

Study: 61.8m Autistic People in the World

In The Politics of Autism, I discuss the uncertainty surrounding estimates of autism prevalence. c

 Elana Gotkine at MedicalXpress:

Damian Santomauro, Ph.D., from the University of Queensland in Archerfield, Australia, and colleagues conducted a systematic literature review to estimate the global prevalence and health burden of autism spectrum disorder.

The researchers found that in 2021, an estimated 61.8 million individuals were on the autism spectrum globally. The global age-standardized prevalence was 788.3 per 100,000 people, which was equivalent to 1,064.7 and 508.1 males and females with autism per 100,000 males and females, respectively.

Globally, autism spectrum disorder accounted for 11.5 million disability-adjusted life-years (DALYs), which was equivalent to 147.6 DALYs per 100,000 people. Age-standardized DALY rates varied from 126.5 to 204.1 per 100,000 people in Southeast Asia, East Asia, and Oceania and in the high-income super region, respectively. Across the lifespan, DALYs were evident, emerging for children younger than 5 years (169.2 DALYs per 100,000 people) and decreasing with age (163.4 and 137.7 DALYs per 100,00 people aged younger than 20 and aged 20 years or older, respectively). For people younger than 20 years, autism spectrum disorder was ranked within the top 10 causes of nonfatal health burden.

From: Damian F Santomauro et al, The global epidemiology and health burden of the autism spectrum: findings from the Global Burden of Disease Study 2021, The Lancet Psychiatry (2024). DOI: 10.1016/S2215-0366(24)00363-8

Prevalence did not vary substantially over time. Studies reporting an increase in the prevalence of the autism spectrum have often relied on registries or administrative records to determine prevalence. Studies using random sampling or consistent active-case finding did not show this trend. This finding aligns with previous work suggesting autistic characteristics in the population have remained stable over time despite a rise in registered diagnoses.32 Nonetheless, the absence of temporal trends in our analysis should be interpreted with caution as we relied on a 15-year time window (reduced from 25 years) to model prevalence data. This time window might have limited our ability to explore temporal trends, but a further reduction was not possible because of data sparsity.

Autism spectrum disorder ranked within the top-ten causes of non-fatal health burden for young people (age <20 years), emphasising the need for early detection and developmental support for autistic people.3,4,33 Most epidemiological investigations into the autism spectrum have been predominantly centred on children and adolescents, leaving a gap in our understanding of the autism spectrum in adults. The prevalence and health burden of autism spectrum disorder persisted across the lifespan, beginning to decline from age 60 years. DisMod MR 2.1 estimated prevalence while also taking into consideration data available from other epidemiological parameters. In this case, with most of our raw prevalence data limited to younger cohorts, the age pattern in prevalence was informed by excess mortality data modelled by DisMod-MR 2.1 because of limited available prevalence data in adulthood. Because of limited data availability, all mortality data sourced from the systematic review relied on passive case finding (eg, from administrative records). This method might overestimate excess mortality for all autistic people, leading to an underestimation of prevalence in adulthood.

32. Lundström, S ∙ Reichenberg, A ∙ Anckarsäter, H ∙ et al.
Autism phenotype versus registered diagnosis in Swedish children: prevalence trends over 10 years in general population samplesBMJ. 2015; 350, h1961 Crossref Scopus (126)  PubMed Google Scholar
33. Peters-Scheffer, N ∙ Didden, R ∙ Korzilius, H ∙ et al. A meta-analytic study on the effectiveness of comprehensive ABA-based early intervention programs for children with autism spectrum disordersRes Autism Spect Disorder. 2011; 5:60-6  Crossref Scopus (0) Google Scholar 

 

Healthcare Providers on Vaccines and Autism

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

A number of posts discussed Trump's support for the discredited notion.

Amanda L. Eiden, Sheila Drakeley, Kushal Modi, deMauri Mackie, Alexandra Bhatti, Anthony DiFranzo, "Attitudes and beliefs of healthcare providers toward vaccination in the United States: A cross-sectional online survey," Vaccine, Volume 42, Issue 26, 2024, 126437, ISSN 0264-410X, https://doi.org/10.1016/j.vaccine.2024.126437 .  Abstract:

Background

Healthcare providers' (HCPs') beliefs and practices regarding vaccination influence vaccine acceptance in patients.

Objective

To describe HCPs' beliefs and practices regarding vaccines and perceptions of patient perspectives related to vaccine hesitancy.

Methods

This was a non-interventional, cross-sectional, online survey administered to 1213 HCPs based in the United States from December 2021 through January 2022. HCPs provided responses regarding their demographic and professional characteristics, beliefs about vaccine safety and effectiveness, vaccination practices, and their views regarding patients' willingness to receive vaccination.

Results

Study participants included doctors (55.4 %); physician assistants (11.2 %); pharmacists (11.7 %); nurse practitioners (11.1 %); and registered nurses (10.6 %) from across the United States (West, 35.6 %; Midwest, 27.0 %; South, 25.6 %; Northeast, 11.9 %). HCPs belonged to group practices or clinics (34.5 %), private practices (31.9 %), hospital-based practices (21.9 %), or pharmacies (11.7 %). Most HCPs strongly believed it was their duty to promote vaccination (78.1 %) and used in-person conversations to educate patients about vaccines (85.0 %); 95.1 % had been vaccinated against COVID-19. HCPs reported that 54.9 % of patients accept all vaccines without hesitation, 21.0 % accept all vaccines but hesitate, 16.8 % accept only select vaccines, and 7.2 % reject all vaccines. Reasons commonly cited by patients for being hesitant to accept vaccines or refusal included negative media (hesitancy: 64.6 %; refusal: 73.2 %), the influence of friends or family (hesitancy: 60.5 %; refusal: 68.7 %), distrust of the government (hesitancy: 45.8 %; refusal: 68.4 %), concerns over long-term side effects (hesitancy: 56.1 %; refusal: 68.3 %), and worries about vaccine-related autism or infertility (hesitancy: 49.7 %; refusal: 71.9 %). HCPs reported that the largest contributors to vaccine misinformation among patients were social media (91.0 %), celebrities/TV personalities (63.5 %), and mass media (61.1 %).

 

Inclusion and Clinical Trials

In The Politics of Autism, I discuss research priorities.

From the National Council on Disability:

Today, the National Council on Disability (NCD) released a timely report on exclusionary practices that prevent people with disabilities from participating in clinical trials.

The Implicit and Explicit Exclusion of People with Disabilities in Clinical Trials discusses how healthcare practitioners’ internal biases and federal policies contribute to the participation rates, and how the disparity affects people with disabilities and the efficacy of clinical trials.

Federal agencies have made efforts to address exclusionary practices pertaining to people with disabilities, including the U.S. Department of Health and Human Services’ explicit requirements of clinical trials inclusion in the amended Section 504 regulations. However, much work remains to ensure that people with disabilities are meaningfully included in clinical trials.

“A significant step forward was made last September when the NIH finally recognized individuals with disabilities as a health disparities population,” said NCD Chair Claudia Gordon.

“Building upon this progress, our report underscores the alarming reality that people with disabilities are systematically excluded from crucial clinical trials,” said Gordon. “To effectively address health disparities, HHS must prioritize this issue as a connected policy matter across the entire department.”

Health Problems of Autistic Adults

 In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Health problems are prominent among them. 

Li, Y., Xie, T., Snieder, H., & Hartman, C. A. (2024). Associations between autistic and comorbid somatic problems of gastrointestinal disorders, food allergy, pain, and fatigue in adults. Autism, 0(0). https://doi.org/10.1177/13623613241254619. Lay Abstract:

What is already known about the topic?

Autistic children frequently often have accompanying physical health problems. However, this has been much less studied in autistic men and women during adulthood.

What does this article add?

This is one of the first studies to investigate the associations between autistic and somatic problems in adults from the general population. Using a continuous measure of autistic symptom scores and a categorical definition of autism (referred to below as probable autism) which considered symptom severity, childhood age of onset, and functional impairment, we found that autistic problems and  irritable bowel syndrome, food allergy, pain, and fatigue were associated in adults. Sex differences were present for pain and fatigue, for which the associations with autistic symptom scores were somewhat stronger in females than males. Regarding age differences, the associations with fatigue and having food allergy were more pronounced in younger adults. Conversely, older individuals had a higher risk of developing irritable bowel syndrome or experiencing pain if they met the criteria for probable autism.

Implications for practice, research, or policy

There is a need for providing routine programs of screening, assessment, and treatment of autism-related somatic problems and developing evidence-based interventions for autistic individuals. These could be tailored to the needs of specific autistic populations. For example, autistic females could be given extra attention about the potential presence of pain and fatigue, younger adults about the potential presence of food allergy and fatigue, and older adults concerning the potential presence of irritable bowel syndrome and pain.

Best Practices for Health Care

 In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Health problems are prominent among them. 

Kinga Borondy at Gannett:

A bill pending before the Massachusetts Legislature would establish best-practices standards around treatment of patients on the autism spectrum or those with intellectual and developmental disabilities.

“Terrible things can happen to people with autism or those who are intellectually developmentally delayed while they are in medical settings,” said Maura Sullivan, executive director of The Arc of Massachusetts. “They have been restrained, kept in isolation, suffered medical trauma.”

The legislation, sponsored by Rep. Sean Garballey, D-Medford, and Sen. Jason Lewis, D-Winchester, would offer training to all patient-facing staff, from doctors and nurses to custodians and security officers, on recognizing and adjusting to the challenges presented when treating and interacting with intellectually divergent patients.

The Arc already offers the training to young medical professionals through its Operation House Call program, which was launched in 1991 and uses a network of volunteer families. The program has been integrated into the Tufts School of Medicine and the Simmons School of Health Science, and has expanded to Yale School of Nursing, UMass Chan Medical School and Harvard Medical School.

The bill would set standards for treatment in Massachusetts as well as establish a mandatory training program for all practitioners, with continuing education credits for completing the course.

Medical Misinformation

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

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

Suran M, Bucher K. False Health Claims Abound, but Physicians Are Still the Most Trusted Source for Health Information. JAMA. Published online April 26, 2024. doi:10.1001/jama.2024.6837

The COVID-19 pandemic spotlighted a growing problem: the pervasiveness of false claims about health. To better understand how people in the US view health inaccuracies and learn about them through media use, KFF (formerly Kaiser Family Foundation), a nonprofit organization focused on health policy, tracked exposure to and beliefs about certain claims. For their Health Misinformation Tracking Pilot Poll, conducted last year, public opinion researchers at KFF asked a nationally representative sample of 2007 Black, Hispanic, and White adults about inaccurate information pertaining to COVID-19, gun violence, and reproductive health. The survey team also asked where people get their news and which sources of health information they trust.

The poll showed that trust in health care professionals crossed party lines: 95% of both Democrats and Republicans reported trusting their personal physicians to provide the right recommendations about health issues. “Doctors are particularly well positioned to be the messengers when it comes to health recommendations that people really trust,” Lunna Lopes, MSc, the lead author of the report and a senior survey analyst at KFF, told JAMA Medical News in an interview.

Most people have a fair amount of trust in the government to provide accurate information about health issues, but trust varies across political party lines. For example, 87% of Democrats reported trust in the Centers for Disease Control and Prevention compared with 49% of Republicans. State and local public health officials were trusted by 74% of Democrats and 58% of Republicans.

Overall, 96% of participants reported that they’ve heard at least 1 of the 10 inaccurate health claims listed on KFF’s survey—that measles-mumps-rubella (MME) vaccines cause autism, for example, or that ivermectin is effective against COVID-19. And while exposure to health misinformation was rampant, the percentage of people who have heard false claims and believe they’re probably or definitely true ranged from 14% to 35%. “A key takeaway that we got from the data is that people are hearing misinformation, but not many are convinced that it’s true,” Lopes said.

American Academy of Pediatrics: Healthcare Bill of Rights

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Health problems are prominent among them. 

Carol Weitzman, Cy Nadler, Nathan J. Blum, Marilyn Augustyn, Supporting Access for Everyone Consensus Panel; Health Care for Youth With Neurodevelopmental Disabilities: A Consensus Statement. Pediatrics May 2024; 153 (5): e2023063809. 10.1542/peds.2023-063809

Individuals with a neurodevelopmental disability (NDD) face significant health care barriers, disparities in health outcomes, and high rates of foregone and adverse health care experiences. The Supporting Access for Everyone (SAFE) Initiative was developed to establish principles of health care to improve equity for youth with NDDs through an evidence-informed and consensus-derived process. With the Developmental Behavioral Pediatric Research Network, the SAFE cochairs convened a consensus panel composed of diverse professionals, caregivers, and adults with NDDs who contributed their varied expertise related to SAFE care delivery. A 2-day public forum (attended by consensus panel members) was convened where professionals, community advocates, and adults with NDDs and/or caregivers of individuals with NDDs presented research, clinical strategies, and personal experiences. After this, a 2-day consensus conference was held. Using nominal group technique, the panel derived a consensus statement (CS) on SAFE care, an NDD Health Care Bill of Rights, and Transition Considerations. Ten CSs across 5 topical domains were established: (1) training, (2) communication, (3) access and planning, (4) diversity, equity, inclusion, belonging, and anti-ableism, and (5) policy and structural change. Relevant and representative citations were added when available to support the derived statements. The final CS was approved by all consensus panel members and the Developmental Behavioral Pediatric Research Network steering committee. At the heart of this CS is an affirmation that all people are entitled to health care that is accessible, humane, and effective.

New Rule on Health Discrimination

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. 
People with autism and other disabilities have faced discrimination in organ transplants.  During the pandemic, they faced discrimination in the availability of ventilators.  And along with other people with disabilities, they reportedly encounter discrimination in health care more generally.

From HHS:

Today, the U.S. Department of Health and Human Services (HHS), through its Office for Civil Rights (OCR), finalized a rule that prohibits discrimination on the basis of disability. This rule, titled Discrimination on the Basis of Disability in Health and Human Service Programs or Activities, advances equity and bolsters protections for people with disabilities under Section 504 of the Rehabilitation Act (Section 504). This important Final Rule is HHS’s latest action in furtherance of Executive Order 14091, entitled Further Advancing Racial Equity and Support for Underserved Communities Through the Federal Government.

...
Section 504 prohibits discrimination on the basis of disability in programs and activities that receive funding from HHS. Since the law was enacted, major legislative and judicial developments have shifted the legal landscape of disability discrimination under Section 504.

HHS has updated the regulations to clarify obligations in several critical areas. Specifically, the rule:

• Ensures that medical treatment decisions are not based on negative biases or stereotypes about individuals with disabilities, judgments that an individual with a disability will be a burden on others, or dehumanizing beliefs that the life of an individual with a disability has less value than the life of a person without a disability.
• Prohibits the use of any measure, assessment, or tool that discounts the value of a life extension on the basis of disability to deny, limit, or otherwise condition access to an aid, benefit or service.
• Defines what accessibility means for websites and mobile applications and sets forth a specific technical standard to ensure that health care and human service activities delivered through these platforms are readily accessible to and usable by individuals with disabilities.
• Adopts the U.S. Access Board’s standards for accessible medical diagnostic equipment, like exam tables and mammography machines.
• Details requirements to ensure nondiscrimination in the services provided by HHS-funded child welfare agencies, including, but not limited to, reasonable efforts to prevent foster care placement, parent-child visitation, reunification services, child placement, parenting skills programs, and in- and out-of-home services.
• Clarifies obligations to provide services in the most integrated setting, like receiving services in one's own home, appropriate to the needs of individuals with disabilities.

Additionally, the Final Rule updates existing requirements to make them consistent with the American with Disabilities Act (ADA), as many HHS recipients are also covered by the ADA this consistency will improve and simplify compliance.

This rule takes effect 60 days after publication. The current rule remains in effect until that time. If you believe that you or another party has been discriminated against on the basis of race, color, national origin, sex, age, or disability, visit the OCR complaint portal to file a complaint online at: https://www.hhs.gov/ocr/complaints/index.html

The final rule may be viewed or downloaded at: https://www.federalregister.gov/public-inspection/2024-09237/nondiscrimination-on-the-basis-of-disability-in-programs-or-activities-receiving-federal-financial

A fact sheet on the rule is available here: https://www.hhs.gov/civil-rights/for-individuals/disability/section-504-rehabilitation-act-of-1973/part-84-final-rule-fact-sheet/index.html

Axis of Crackpots

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.

Kate Briquelet at The Daily Beast:

The sister of Trump’s former national security adviser Michael Flynn and a band of conservative anti-vax activists are running for the board of a renowned public hospital in Florida under the banner of “medical freedom.”

If they win, they’ll hold a majority over Sarasota’s award-winning facility where one of their allies—elected in 2022 with two other “health freedom candidates” to the nine-member panel—is already trying to peddle vaccine misinformation.

The rogues’ gallery includes Mary Flynn O’Neill, who directs her brother’s nonprofit and routinely appears on right-wing shows with QAnon conspiracy theorists; Tanya Parus, the president of Moms For America’s Sarasota chapter and co-owner of a “freedom-based” health clinic, and Tamzin Rosenwasser, a dermatologist who once railed against the Federation of State Medical Boards’s warning to doctors who spread COVID vaccine misinformation, comparing the organization to Stalin’s secret police.

Michael Flynn posted this picture today. I was finally able to locate a full view of the board behind him. (Telegram) (1/2) pic.twitter.com/y7vTg9TFXa

— PatriotTakes 🇺🇸 (@patriottakes) July 6, 2021

The list includes familiar figures from the antivax movement:

• Del Bigtree (now RFK Jr.'s comms director)
• Rashad [sic, Rashid] Buttar
• Charleen [sic, Charlene] Bollinger
• Robert Kennedy, Jr.
• Judy Mikovits
• Sherry [sic, Sherri] Tenpenny
• Dr. [Andrew] Wakefield

There may be others whose names are too hard to read in the photograph.

Autism, COVID, and Inequality

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

Anderson, K.A., Radey, M., Rast, J.E. et al. The Economic Impacts of COVID-19 on Autistic Children and Their Families. J Autism Dev Disord (2024). https://doi.org/10.1007/s10803-024-06280-y

Abstract

Purpose

We used data from the National Survey of Children’s Health to (1) examine differences in economic hardship and safety net program use after the implementation of federal relief efforts, and (2) assess whether the COVID-19 pandemic exacerbated autism-based disparities in hardship and program use.

Methods

We examined five dimensions of economic hardship (poverty, food insecurity, medical hardship, medical costs, and foregone work) and four safety net programs (cash assistance, Supplemental Nutrition Assistance Program (SNAP), Special Supplemental Nutrition Program for Women, Infants and Children (WIC), and free or reduced-cost meals). First, we calculated adjusted prevalence and odds ratios to compare pre-COVID (2018–2019) and during COVID (2021) outcomes by autism status. Next, we calculated the adjusted odds of each outcome among autistic children compared to those of children with and without other special healthcare needs at both time points.

Results

COVID-19 exacerbated autism-based disparities in food insecurity, SNAP, and public health insurance, but alleviated inequities in medical hardship, foregone work, and cash assistance. Autistic children did not experience declines in food insecurity or increases in SNAP like other children; medical hardship and foregone work decreased more for autistic children; and the magnitude of autism-based differences in public coverage significantly increased during the pandemic.
Conclusion

Federal relief efforts likely improved economic outcomes of children; however, these effects varied according to type of hardship and by disability group. Efforts to promote economic well-being among autistic populations should be tailored to the financial challenges most salient to low-income autistic children, like food insecurity.

Medical Schools and Autism

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Health problems are prominent among them.

Reeda Iqbal and Sherab Tsheringla at Medpage Today:

When I entered medical school, I quickly learned that there are important gaps in autism medical education. A 2019 study demonstrated that medical students report low knowledge of ASD, and more than 90% of students cite inadequate preparation for caring for individuals with autism. Medical students also report a greater need for increased education and training in ASD care.

...
First, it is important for medical students to understand the heterogeneous symptom presentation of autism, including the different communication styles and sensory sensitivities that exist. For example, my sister uses an augmentative and alternative communication device (iPad) to communicate her needs; doctors can learn how to incorporate this in her care. In terms of sensitivities, medical providers can learn how to adjust the lighting and reduce noise for these patients. When conducting physical exams, medical providers can communicate clearly or with visual aids before initiating physical touch.

Second, for patients with profound autism, medical students can receive training on behavioral strategies that can be used to address behaviors that are challenging. Desensitization techniques that explain medical visits ahead of time (e.g., visual aids) will help autistic patients understand what to expect. Demonstration of aspects of the examination -- for example with the provider auscultating their own body with the stethoscope -- helps explain procedures verbally and non-verbally.

...

Third, medical students should learn about the different co-occurring conditions associated with autism. Autistic patients often require care across medical specialties such as gastroenterology, neurology, endocrinology, genetics, physical medicine and rehabilitation, developmental pediatric medicine, sleep medicine, and psychiatry along with speech, occupational, and physical therapies. This holistic approach will ensure that students not only formulate a comprehensive understanding of the patient's past medical history and current complaints, but also effectively practice whole-person care.

Finally, it is critical that medical students practice interviewing autistic children, adolescents, and adults. The Ohio State University Nisonger Center has created a curriculum for third-year medical students that prepares them to care for patients with autism through simulated interviews with autistic adults as standardized patients. Programs like this better support physician preparation and competency in the care of autistic patients.

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 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.

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.”

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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.

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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.”

Prevalence in Australia

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

Maathu Ranjan and Dr Anthony Lowe, "Providing Better Support for Children with Autism and Developmental Delay," Actuaries Institute, September 2023."

Over the past ten years, the National Disability Insurance Scheme (NDIS) has transformed the lives of hundreds of thousands of Australians living with disability — there is much to be proud of. However, the reality of the current Scheme is very different to the original vision. In large part, this is because the Scheme was envisioned and legislated based on the social model of disability but has been implemented using the medical model. One of the fastest-growing cohorts of participants is children, particularly children with autism and developmental delay. The system gives families little choice but to seek out formal medical diagnoses, resulting in considerable diagnostic waitlists and the prevention of timely access to early interventions, which evidence shows are most effective. We should use this current window of opportunity presented by the Independent Review of the NDIS to implement a social model of disability which would better support children and help make the NDIS financially sustainable by restoring specialist support in everyday settings and ensuring the support it provides is delivered in the most effective way. 

The Financial Review reproduces a graph from Ranjan's new paper.  See the LinkedIn post.

Diabetes and Autism

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Health problems are prominent among them.

Daniel Gilmore and colleagues have an article at Autism titled "Diabetes mellitus in privately insured autistic adults in the United States"

Lay abstract:

Diabetes is a chronic health condition that is challenging to manage. Estimates of how common diabetes is among non-autistic adults are available, but improved estimates for autistic adults are needed. The purpose of this study was to obtain improved diabetes estimates for autistic adults. We analyzed a large private health insurance claims database to estimate how common diabetes was among autistic adults, and how likely autistic adults were to have diabetes compared to non-autistic adults at 5-year age intervals throughout adulthood (e.g. 18–22, 23–27). We found that diabetes was more common among autistic adults than non-autistic adults and that autistic adults were significantly more likely than non-autistic adults to have diabetes throughout most of adulthood. Our findings suggest that autistic adults may be more likely than non-autistic adults to experience diabetes in adulthood. The development of diabetes support services and programs that accommodate autistic adults’ individual needs are important for future study to promote positive diabetes outcomes for autistic adults.

Health Care Discrimination

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. People with autism and other disabilities have faced discrimination in organ transplants.  During the pandemic, they faced discrimination in the availability of ventilators.  And along with other people with disabilities, they reportedly encounter discrimination in health care more generally.

"Adults With Disabilities Experienced Unfair Treatment in 2022," Robert Wood Johnson Foundation Brief Oct-11-2023 | Gonzalez D , Kenney GM , Karpman M , and Morriss S

The Issue

Four in 10 adults with disabilities reported experiencing unfair treatment in healthcare settings, at work, or when applying for public benefits because of their disabilities or other personal characteristics in 2022. 

Key Findings

71 percent of adults with disabilities who reported experiencing unfair treatment in healthcare settings reported a subsequent disruption to care, including delaying (54%) or forgoing (50%) needed care and not following clinician recommendations (31%).

Almost half (46%) of adults with disabilities who experienced unfair treatment in workplaces reported looking for a new job because of the way they were treated. 

About 71 percent of adults with disabilities who experienced unfair treatment in social service settings had difficulty receiving public benefits, including delaying (45%) or forgoing (57%) benefits.

Black and Hispanic/Latinx adults with disabilities were more likely to report unfair treatment because of their race, ethnicity, country of origin, or primary language compared to White adults with disabilities. 

Conclusion

Despite laws prohibiting discrimination against people with disabilities, unequal treatment persists. Improving equity for people with disability for people with disabilities requires continuous investment from policymakers and the public and private sectors.