Life Expectancy Among Autistic Medicaid Beneficiaries

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.

Li G, DiGuiseppi CG, Blanchard A, Russell MT, Ing C. Autism Spectrum Disorder and Life Expectancy Among Medicaid Beneficiaries. JAMA Netw Open. 2026;9(9):e2633251. doi:10.1001/jamanetworkopen.2026.33251

In this serial cross-sectional study of Medicaid beneficiaries, life expectancy at birth for those with ASD was approximately 65 years, nearly 6 years less than for the Medicaid beneficiary population and 14 years less than for the US general population. The shortened life expectancy for Medicaid beneficiaries with ASD was due to excess mortality from a variety of diseases and health problems. Compared with the general population, autistic women face a greater deficit in life expectancy than autistic men do, due to more psychiatric comorbidities and resulting excess mortality.4,5,8,9

Our study has several notable limitations. Because Medicaid is a means-tested public insurance program for low-income individuals and individuals with disabilities, beneficiaries with ASD are likely to have lower socioeconomic status and more severe symptoms than autistic individuals who are not enrolled in Medicaid, possibly biasing life expectancies reported in our study toward underestimation.10 Moreover, Medicaid beneficiaries with ASD are disproportionately children, young adults, and males compared with the reference populations, a potential concern for residual bias from unmeasured confounding in the SMRs. Despite these limitations, our findings have important implications for developing targeted interventions to reduce preventable excess mortality among people with ASD.

 

Literature on Older Autistic Adults

In The Politics of Autism, I write about the everyday struggles facing autistic people and their families.  The struggles of autistic adults have not received enough scholarly attention.

Nicholas, D.B., Nelson, H., Shafai, F. et al. Examining the Lived Experiences of Older Autistic Adults: A Synthesis Review of Qualitative Literature. J Autism Dev Disord (2026). https://doi.org/10.1007/s10803-026-07343-y

This review reflects literature published from 2013 to 2024, with a focus on aging, older adulthood and autism. Themes in this literature addressed ways of being and sense of self (Hickey et al., 2018; Hwang et al., 2017; Moseley et al., 2020), relationship with others (Hickey et al., 2018; Mason et al., 2019; Hwang et al., 2017, 2023), pathways to meaning and enjoyment (Hickey et al., 2018; Hwang et al., 2017, 2023; Mason et al., 2019; Moseley et al., 2020; Waldron et al., 2022), and daily life at home or in the community (Hickey et al., 2018; Hwang et al., 2017, 2023; Mason et al., 2019; Moseley et al., 2020; Waldron et al., 2022). Notably, positive experiences and outcomes generally related to personal experience and meaning-making, whereas negative outcomes consistently were associated with healthcare challenges and service gaps.

The literature highlighted gaps in services and service provider knowledge about aging with autism (Barber, 2015; Heijnen-Kohl et al., 2022; Mansour et al., 2024; Moseley et al., 2020). Stigma and bias were noted to result in negative experiences with healthcare professionals (Mansour et al., 2024; Moseley et al., 2020), barriers to accessing supports (Moseley et al., 2020) and reduced individualized service provision (Hwang et al., 2023). Inaccurate diagnoses negatively impacted treatment plans and eligibility for needed services (Mansour et al., 2024), resulting in an overall dearth of systemic support (Barber, 2015; Hwang et al., 2017; Mansour et al., 2024; Moseley et al., 2020).

Reflecting on such gaps, improved support across the lifespan was strongly recommended, including the need to cultivate greater trust among autistic people in their healthcare providers, based on findings that earlier experiences influence later engagement and trust (Moseley et al., 2020). Training for service and healthcare providers was advocated (Trollor et al., 2022), with attention to processes of aging, autism and the experiences of older autistic adults (Barber, 2015; Heijnen-Kohl et al., 2022; Moseley et al., 2020).

Focus on Helping Autistic People, Not Spreading Pseudoscience

 A number of posts have discussed Trump's support for discredited notions about autism 

Challenging Claims of an Autism Epidemic — Misconceptions and a Path Forward

Authors: Tara Eicher, Ph.D., John Quackenbush, Ph.D., and Ari Ne’eman, Ph.D.Published January 17, 2026DOI: 10.1056/NEJMp2514250

The history of autism offers many reasons for fraught relationships between clinicians and autistic persons and their families. For decades, the psychiatric and especially psychoanalytic communities relied on psychodynamic theories of the causation of autism that blamed “refrigerator mothers.” It is thus unsurprising that a culture of distrust exists between parents of autistic children and physicians — a distrust that the president only exacerbates when he suggests that physicians are withholding information from families about environmental causes. This rhetoric, specifically the blaming of mothers who use acetaminophen during pregnancy for their children’s impairments, harkens back to past decades. Such rhetoric can cause concrete harms, encouraging expectant mothers to forgo essential treatment for fever and leading parents to turn to an exploitative alternative medicine industry peddling costly pseudoscience that frequently harms autistic people.

Autistic people and their families do deserve answers — not answers involving ill-conceived “causes” and pseudoscientific “cures,” but answers to their aspirations for improved services, medical care, and inclusion in society. Much needs to be done to shift the focus of existing autism-research investments toward issues of immediate relevance to autistic people and their families. Researchers who make this shift can help address the root causes of mistrust that make some parents of autistic people so receptive to pseudoscientific treatments and theories of causation. Unfortunately, the direction the federal government is taking on autism seems calculated to exacerbate the divide.

Research programs can be designed to maximize the benefits for autistic people and their families by studying both causes and the most effective and meaningful services and supports in an appropriate balance. Such a constructive shift will not be accomplished, however, by means of alarmist claims about autism as an epidemic, chasing of ill-supported and debunked theories of causation, and further stigmatizing autism. Instead, it will require building strong, collaborative research programs in which researchers from diverse fields join forces with autistic people and their families to generate lasting change.

Nature Medicine: Autistic People Deserve Science-Based Policy

 A number of posts discussed Trump's support for discredited notions about autism. The Sept 22 White House news conference was a firehose of lies. Last month, he posted an unfounded warning about Tylenol.  RFK then tiptoed away from the idea that it definitely causes autism.

From an editorial in Nature Medicine:

Recent public discourse in the USA has been marred by the propagation of claims about the causes of autism that do not reflect current scientific consensus and disregard an extensive research body indicating that there is no single root cause of autism. US Secretary of Health and Human Services Robert F. Kennedy Jr. has made identifying the causes of autism a focal point1 of his tenure. While understanding the origins of autism is important, the approach must be grounded in rigorous, unbiased science and informed by the lived experiences of people with autism and their families. So far, this standard does not seem to have been met.

Within the first 10 months of the current administration, senior officials have advanced a series of assertions linking autism to childhood vaccines, prenatal acetaminophen2 (Tylenol) use, and even circumcision3. These claims reflect a broader pattern of science communication that prioritizes ideology over evidence, often relying on selective data interpretation4 while disregarding the broader scientific literature. This approach marginalizes experts, advocacy organizations, and — most importantly — people with autism and their families.

The consequences of such rhetoric were immediate and far-reaching. A national poll conducted shortly after a press conference in which Secretary Kennedy and President Trump alleged a causal link between prenatal Tylenol use and autism found that 77% of respondents had been exposed to the claim5. Alarmingly, 60% expressed uncertainty about its validity. This confusion is not benign. Acetaminophen is considered the safest choice of analgesic and antipyretic for use during pregnancy; systematically discouraging its use could endanger maternal and fetal health.

Moreover, the language employed in these public statements risks perpetuating stigma. Framing autism as a condition to be ‘cured’ or attributing blame to parents6 reinforces harmful stereotypes and undermines the dignity of people with autism. It is imperative that public communication about autism be accurate, respectful and reflective of neurodevelopmental diversity.

While understanding autism’s causes remains a legitimate scientific goal, it must not eclipse the urgent need to improve the quality of life for people with autism across their lifespan. The US National Institutes of Health’s Autism Data Science Initiative, launched earlier this year with over $50 million in funding across 13 projects, focuses mainly on early-life exposures and the perceived rise in autism prevalence. Although such efforts are valuable, they must be complemented by research into aging, comorbidities and service delivery. Notably, the 2020 Interagency Autism Coordinating Committee report found that less than 13% of autism research funding was allocated to lifespan issues, services and support — an imbalance that must be urgently addressed.

Equally important is the inclusion of people with autism in shaping the research agenda. Participatory research models that prioritize co-creation and community engagement are more likely to yield findings that translate into meaningful improvements in care and policy. Yet, as of this writing, the Interagency Autism Coordinating Committee — the only federal advisory body with representation from the autism community — has not publicly announced a convening since the start of the current administration. This absence raises concerns about the inclusivity and legitimacy of recent policy and funding decisions.

Responsibility for restoring scientific integrity in autism research and policy must be shared. Advocacy organizations such as the Autistic Self Advocacy Network, the Autism Society and the Academic Autism Spectrum Partnership in Research and Education have taken commendable steps to counter misinformation and promote community-engaged research. 

References

1. Seitz, A. PBS News https://go.nature.com/49E5GKv (10 April 2025).
2. Hamilton, J. Noguchi, Y. & Greenfieldboyce, N. NPR https://go.nature.com/4qJlEch (22 September 2025).
3. Beaumont, T. & Ungar, L. PBS News https://go.nature.com/3LAfWcE (10 October 2025).
4. FactCheck.org. Annenberg Public Policy Center https://go.nature.com/47nNCTu (3 February 2025).
5. Shutt, J. The Highland County Press https://go.nature.com/4oGeTGn (23 October 2025).
6. Kim, J. NPR https://go.nature.com/4nGKZRB (26 September 2025).

 

Autism and Aging

In The Politics of Autism, I write about the everyday struggles facing autistic people and their families.

Stewart, Gavin R. Happé, Francesca
Aging Across the Autism Spectrum
2025 Annual Review of Developmental Psychology
https://doi.org/10.1146/annurev-devpsych-111323-090813

Abstract:

Aging in autistic populations is a historically neglected but now rapidly advancing area of research. This narrative review provides a broad overview of the current state of the field of aging on the autism spectrum by synthesizing and critically appraising findings from across a range of research priorities identified by autistic people and other stakeholder groups. These include (a) the trajectory of core autistic features; (b) health profiles, biological aging, and mortality; (c) influential life experiences and life outcomes (including transition periods such as retirement and menopause and events such as trauma and periods of crisis); (d) cognitive function, aging, and dementia; and (e) quality of life and social support. Where possible, empirical research focusing on diagnosed autistic people is presented, but due to very high rates of underdiagnosis of autism in this demographic, trait-based research is also considered. Research specifically focusing on midlife (i.e., 40–64 years) and older age (i.e., 65 years and older) is presented where available, but due to a dearth of such research, lifespan studies (i.e., samples including middle-aged and older people, but not differentiating them) are also discussed. This review concludes by identifying future research priorities, as well as key conceptual issues that researchers interested in the intersection of aging and autism should consider for this emerging and rapidly advancing area of research.

From the article:

This narrative review highlights that autistic people in midlife and older age likely face poorer aging outcomes than their nonautistic peers. Despite gaps in the literature, current research (using categorical and dimensional approaches) suggests that middle-aged and older people on the autism spectrum are likely to experience higher rates of physical and mental health conditions, greater health-care barriers, increased early mortality, and more challenges with life transitions. They also experience more adverse life events, more cognitive difficulties, potential dementia risk, lower quality of life, greater social isolation, and lower social support. While cohort effects and high rates of underdiagnosis may influence these findings, it is evident that aging autistic people likely require tailored support to improve their outcomes. This review identifies key areas for future research, proposing an improved conceptual framework to better integrate autism into the field of aging research. It also underscores the importance of meaningful engagement with the autistic community and stakeholders to develop effective resources for this historically underserved population.

Measuring Quality of Life and Mental Health

Uncertainty is a major theme of The Politics of Autism. In the concluding section, I write:

A key question in autism policy evaluation is simple to pose, hard to answer: How do autistic people benefit? How much better off are they as a result of government action? While there are studies of the short-term impact of various therapies, there is surprisingly little research about the long term, which is really what autistic people and their families care about. As we saw in chapter 4, few studies have focused on the educational attainment of autistic youths. For instance, we do not know much about what happens to them in high school, apart from the kinds of classes that they take. One study searched the autism literature from 1950 through 2011 and found just 13 rigorous peer reviewed studies evaluating psychosocial interventions for autistic adults. The effects of were largely positive, though the main finding of the review is that there is a need for further development and evaluation of treatments for adults.

Timmerman, A., Totsika, V., Lye, V., Crane, L., Linden, A., & Pellicano, E. (2024). Quality-of-life measurement in randomised controlled trials of mental health interventions for autistic adults: A systematic review. Autism, 0(0). https://doi.org/10.1177/13623613241287586. Lay abstract:

Autistic people are more likely to have co-occurring mental health conditions compared to the general population, and mental health interventions have been identified as a top research priority by autistic people and the wider autism community. Autistic adults have also communicated that quality of life is the outcome that matters most to them in relation to mental health research and that they want to be involved more actively in the research process. Our systematic review aimed to determine the extent and nature of (1) quality of life measurement in randomised controlled trials of mental health interventions for autistic adults and (2) community involvement taking place within identified randomised controlled trials. We searched Medline, Embase, APA PsycInfo, Web of Science and grey literature sources. After screening over 10,000 records, 19 studies were eligible and five of those studies measured quality of life as an outcome. Of those five, three included community involvement and two did not report on community involvement. We conclude there is a need for increased use of quality of life measurement when trialling mental health interventions, including the use of measures validated for autistic adults – which would be facilitated by greater autistic involvement in the research process

Cathy McMorris Rodgers to Retire from Congress

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

I have an article at The Forum: "Disability Policy in the Contemporary Congress." Abstract:

The politics of disability policy in the contemporary Congress confirms the observation by James Curry and Frances Lee that lawmaking largely remains a process of bipartisan accommodation. Most major disability legislation since the 1970s has passed with bipartisan sponsorship and support. One reason is that the issue affects so many Americans, including members of Congress. There have been some exceptions to this bipartisan pattern, particularly when disability policy intersects with more contentious issues. And bipartisanship does not guarantee outcomes that are satisfactory to people with disabilities.

Andru Zodrow NonStop Local:

Rep. Cathy McMorris Rodgers (R-WA) has announced that she is not seeking reelection in 2024. She has served in congress since 2005 and is an influential figure in both Congress and the Republican Party. Her choice to not run again marks a sea-change in regional politics.

...

Eric Michael Garcia, an MSNBC columnist and advocate for autistic people, noted that McMorris Rodgers made disability issues a consistent theme of her legislative work.

“Cathy McMorris Rodgers is an outspoken voice on ending subminimum wage labor for people with [disabilities.] Her son has Down Syndrome. I was surprised she didn’t put herself up for speaker,” Garcia wrote.

Conservative media figure Brandi Kruse registered her surprise with the decision, and argued that McMorris Rodgers’ departure was part of a broader shift in the Congress.

“We’ve seen this really across the country, from some of the more sane members of congress, where it's just become too much–it's become a sideshow,” Kruse said.

She chairs the Education and Workforce Committee. Daniela Altimari and David Jordan at Roll Call:

Most recently, she led the House debate ahead of passage of a bill this week to ban federal programs from using “quality-adjusted life years” in assessing the value of treatments. Disability advocates argue the strategy discounts people with disabilities. Democrats, for their part, support the concept but argued that the bill, as written, goes further and could hinder other strategies to assess cost-effectiveness.

...

Her son, Cole Rodgers, was born with an extra chromosome and that, she said, inspired her to become an advocate for people with disabilities.

“Cole was with me on the House floor when we passed the ABLE Act, which marked a new chapter of opportunity and independence for people living with a disability,’’ she said, referring to legislation she helped shepherd through that helps people with disabilities open tax-free savings accounts.

Rodgers has cited her son as a reason she is passionately against abortion. She frequently references him as a motivator on issues related to protecting life.

QALYs

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.  and the availability of ventilators.

 A release from Rep. Cathy McMorris Rodgers:

Eastern Washington Congresswoman Cathy McMorris Rodgers (WA-05) today announced introduction of H.R. 485, the Protecting Health Care for All Patients Act, which would expand access to lifesaving cures and prevent discrimination against Americans with disabilities. The House Energy and Commerce Committee Subcommittee on Health will consider the bill at a legislative hearing on February 1, 2023 titled: “Lives Worth Living: Addressing the Fentanyl Crisis, Protecting Critical Lifelines, and Combating Discrimination Against Those with Disabilities.”

“All lives are worth living. It’s unconscionable that a health care bureaucracy would so callously determine that someone’s life is worth less. They deserve every chance to have hope and reach their full potential,” said Rodgers. “The ‘quality-adjusted life years’ measurement is used to discriminate against people with chronic illnesses and disabilities, like cystic fibrosis, ALS, or Down syndrome, putting them at the back of the line for treatment. Moving this legislation will be a priority for our committee.

Rodgers was joined in leading this legislation by House Ways and Means Committee Chair Jason Smith (R-MO), as well as GOP Doctors Caucus Co-Chairs Rep. Brad Wenstrup, D.P.M. (R-OH) and Rep. Michael Burgess, M.D. (R-TX).

Background:

H.R. 485 would prohibit the use of quality adjusted life years (QALYs) in all federal programs—an expansion from the current prohibition that only applies in a limited fashion to the Medicare program.

The controversial metric intentionally devalues treatments for disabled individuals and those with chronic illnesses for purposes of determining whether the treatment is cost-effective enough to be paid for by the federal government. The use of QALYs is a clear form of discrimination. The bill would also prohibit the importation of price-controls from countries that use QALYs, which are a socialist trademark of government-run health insurance programs.

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.

Doctors and Disabilities

The Politics of Autism discusses health care. People with disabilities such as autism face many problems with the health care system, including the attitudes of medical professionals.

Emma Yasinski at The Atlantic:

Due in part to scant data, information about health care for people with disabilities is limited, according to Tara Lagu, a co-author of both the 2021 and 2022 papers and the director of the Institute for Public Health and Medicine’s Center for Health Services & Outcomes Research at Northwestern University Feinberg School of Medicine. The few studies that have been done suggest that people with disabilities get preventive care less frequently and have worse outcomes than their nondisabled counterparts.

... 

These issues are well known to Lisa Iezzoni, a health-policy researcher at Massachusetts General Hospital and a professor of medicine at Harvard Medical School. Over the past 25 years, Iezzoni has interviewed about 300 people with disabilities for her research into their health-care experiences and outcomes, and she realized that “every single person with a disability tells me their doctors don’t respect them, has erroneous assumptions about them, or is clueless about how to provide care.” In 2016, she decided it was time to talk to doctors. Once the National Institutes of Health funded the work, she and Lagu recruited the 714 physicians that took the survey for the study published in 2021 in Health Affairs.

Not only did many doctors report feeling incapable of properly caring for people with disabilities, but a large majority held the false belief that those patients have a worse quality of life, which could prompt them to offer fewer treatment options.

During the 2021 study, Iezzoni’s team recorded three focus-group discussions with 22 anonymous physicians. Although the open-ended discussions weren’t included in the initial publication, Lagu says she was “completely shocked” by some of the comments. Some doctors in the focus groups welcomed the idea of additional education to help them better care for patients with disabilities, but others said that they were overburdened and that the 15 minutes typically allotted for office visits aren’t enough to provide these patients with proper care. Still others “started to describe that they felt these patients were a burden and that they would discharge patients with disability from their practice,” Lagu says. “We had to write it up.”

...

Indeed, in the focus groups led by Lagu and Iezzoni, some of the doctors revealed that they view the ADA and the people it protects with contempt. One called people with disabilities “an entitled population.” Another said that the ADA works “against physicians.”

Evaluating ABA

Uncertainty is a major theme of The Politics of Autism.  In the concluding section, I write:

A key question in autism policy evaluation is simple to pose, hard to answer: How do autistic people benefit? How much better off are they as a result of government action? While there are studies of the short-term impact of various therapies, there is surprisingly little research about the long term, which is really what autistic people and their families care about. As we saw in chapter 4, few studies have focused on the educational attainment of autistic youths. For instance, we do not know much about what happens to them in high school, apart from the kinds of classes that they take. One study searched the autism literature from 1950 through 2011 and found just 13 rigorous peer reviewed studies evaluating psychosocial interventions for autistic adults. The effects of were largely positive, though the main finding of the review is that there is a need for further development and evaluation of treatments for adults.

Mojgan Gitimoghaddam, Natalia Chichkine, Laura McArthur, Sarabjit S. Sangha & Vivien Symington have an article at Perspectives on Behavior Science titled "Applied Behavior Analysis in Children and Youth with Autism Spectrum Disorders: A Scoping Review."  The abstract:

This manuscript provides a comprehensive overview of the impact of applied behavior analysis (ABA) on children and youth with autism spectrum disorders (ASD). Seven online databases and identified systematic reviews were searched for published, peer-reviewed, English-language studies examining the impact of ABA on health outcomes. Measured outcomes were classified into eight categories: cognitive, language, social/communication, problem behavior, adaptive behavior, emotional, autism symptoms, and quality of life (QoL) outcomes. Improvements were observed across seven of the eight outcome measures. There were no included studies that measured subject QoL. Moreover, of 770 included study records, only 32 (4%) assessed ABA impact, had a comparison to a control or other intervention, and did not rely on mastery of specific skills to mark improvement. Results reinforce the need for large-scale prospective studies that compare ABA with other non-ABA interventions and include measurements of subject QoL to provide policy makers with valuable information on the impacts of ABA and other existing and emerging interventions.

From the article:

Most of the current literature surrounding ABA-based interventions lacks investigations into the QoL of children with ASD and instead focuses on aberrant behaviors (Reichow et al., 2018; Whitehouse et al., 2020). A recent meta-analysis found that, upon analyzing five articles of higher scientific credence, none conducted investigations into the changes with respect to QoL for the children or parents (Reichow et al., 2018). The present scoping review likewise found no occurrences of subject QoL measures in the sample analyzed. Overall changes in QoL for children living with ASD is of the utmost importance, as QoL is “individuals’ perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns” (WHO, 1997, p. 1). The continued lack of research into long-term effectiveness of ABA treatments is an ongoing concern and should be a focus of future research to help measure QoL (Whitehouse et al., 2020) and also to investigate any possible adverse effects (Rodgers et al., 2020). For example, recent literature investigating adults with ASD who participated in ABA treatments when they were young has shown increases in incidences of posttraumatic stress disorder (PTSD); this is an emerging field of research in adults with ASD and should be further investigated through long-term studies (Kupferstein, 2018).

Social Support and Older Autistic 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.

 Rebecca A Charlton, Goldie A McQuaid, Gregory L Wallace have an article at Autism titled "Social support and links to quality of life among middle-aged and older autistic adults"  The lay abstract:

Social support can take many forms, such as practical help, time spent socially with others, or the satisfaction with personal relationships. Social support is known to affect quality of life (QoL) in both non-autistic older and autistic young adults. QoL reflects how satisfied an individual is with their life either overall or in a certain area. We know little about middle-aged and older autistic adults’ experiences of social support or QoL. In this study, 388 adults aged 40–83 years old, completed online questionnaires asking about background such as age and sex, depression and anxiety symptoms, QoL (physical, psychological, social, environmental, and autism-specific), and different types of social support. Even after taking into account background, depression, and anxiety, social support was important for individuals’ QoL. To our knowledge this is the first paper to examine the relationship between social support and QoL in middle-aged and older autistic adults. Improving social support may have a significant impact on the QoL of older autistic adults. Future studies should examine whether age-related changes in social support (size, content, and arrangement of social networks) that are common in non-autistic aging, also occur among older autistic adults.

Loneliness

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.

Kana Umagami and colleagues have an article at Autism titled "Loneliness in autistic adults: A systematic review."  Lay abstract:

Recently, researchers have been interested in how autistic people experience loneliness. Yet, most of this research has focused on loneliness in autistic children and young people. We present the results of a systematic review on loneliness in autistic adults. A systematic review is a rigorous way of searching for all existing research on a topic and summarizing the findings about specific questions. We searched for all research published on this topic until 9 April 2021. We found 34 articles that investigated loneliness in autistic adults. This research showed that (1) there is fairly little research that has involved directly asking autistic adults about their first-hand experiences of loneliness (e.g. what loneliness feels like for them); (2) few research studies have used loneliness questionnaires specifically developed for autistic adults (this was attempted in just one research study); (3) collective loneliness (i.e. loneliness associated with how much an autistic person feels they ‘fit in’ to society) seems important to autistic adults but has not been investigated as commonly as other aspects of loneliness (e.g. loneliness associated with romantic relationships or friendships); (4) things that might increase loneliness in autistic adults include anxiety and depression, and a lack of autism understanding and acceptance, for example; and (5) things that might reduce loneliness in autistic adults include having relationships and self-acceptance, for example. In our article, we discuss the kinds of future research on loneliness in autistic adults that might be useful.

Physican Perceptions of People with Disabilities

The Politics of Autism discusses health care, and explains that autism services can be complicated, creating difficulties for autistic people and their families. 

Lisa I. Iezzoni and colleagues have an article at Health Affairs titled Physicians’ Perceptions Of People With Disability And Their Health Care."  The abstract:

More than sixty-one million Americans have disabilities, and increasing evidence documents that they experience health care disparities. Although many factors likely contribute to these disparities, one little-studied but potential cause involves physicians’ perceptions of people with disability. In our survey of 714 practicing US physicians nationwide, 82.4 percent reported that people with significant disability have worse quality of life than nondisabled people. Only 40.7 percent of physicians were very confident about their ability to provide the same quality of care to patients with disability, just 56.5 percent strongly agreed that they welcomed patients with disability into their practices, and 18.1 percent strongly agreed that the health care system often treats these patients unfairly. More than thirty years after the Americans with Disabilities Act of 1990 was enacted, these findings about physicians’ perceptions of this population raise questions about ensuring equitable care to people with disability. Potentially biased views among physicians could contribute to persistent health care disparities affecting people with disability.

From the article:

Our multivariable findings suggest one potential explanation for the finding about not strongly welcoming disabled patients into their practices: Physicians expressing strong confidence in their ability to provide the same quality of care to people with disability had significantly higher odds of welcoming them into their practices. Medical schools generally do not include disability topics in their curricula.15,16,37,38 Nevertheless, even physicians with more than twenty years of practice, who presumably should have extensive experience with this population, did not appear more likely to strongly welcome patients with disability into their practices.

       ...

Some patients with disability express frustration about physicians’ lack of insight into the quality of their daily lives.39 Yet asking patients with disability to prove their quality of life to their physicians to avoid inequitable treatment is ethically unacceptable. Why should people with disability, unlike other patients, be compelled to justify to their physicians how they value their lives? More than twenty years ago, researchers investigated how perceptions of the quality of life of people with disability can diverge from societal assumptions. These inquiries identified a so-called disability paradox:40 that many people with significant disability equilibrate to living with functional limitations and enjoy good quality of life. Under the disability paradox, “the general public, physicians and other health care workers perceive that persons with disabilities have an unsatisfying quality of life despite the fact that over 50% of these people report an excellent or good quality of life.”40 More than three decades after the ADA, the disability paradox concept seems somewhat outdated, given its assumptions that people without disability have the authority to define what constitutes good-quality life and that all people’s lives must fit some preconceived notion of “normality.”

COVID-19 and Quality of Life

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all.

People with autism and other disabilities have faced discrimination in organ transplants.  Now they face discrimination in the availability of ventilators.

AMA Journal of Ethics, Ethics Talk Podcast Transcript - Disability Community Perspectives on COVID-19 Episode: Disability Community Perspectives on COVID-19 Host: Tim Hoff Guests: Alice Wong and Joe Stramondo, PhD

HOFF: The criteria according to which scare resource allocation decisions should be made almost always include a reference to “quality of life.” Because quality of life is subjective, however, and because we’re so often wrong, as the data suggests, about how we judge other people’s satisfaction with their own lives, quality of life-based criteria can be hard to apply uniformly and equitably and justly. Many have argued in various ways that using quality of life as a criterion is the first step on the slide down the slippery slope to eugenics, and there are very good reasons to take the merits of these arguments seriously. In fact, at least some parts of the federal government seem to be doing so. For example, the Office of Civil Rights in the U.S. Department of Health and Human Services reminds us—and I’m just going to quote this here for the sake of clarity—that, “Persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgements about a person’s relative ‘worth’ based on the presence or absence of disabilities or age. Decisions by covered entities concerning whether an individual is a candidate for treatment should be based on an individualized assessment of the patient and his or her circumstances based on the best available objective medical evidence.”

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WONG: And you know, I think, again, when we think about quality of life, I think all of us need to really question and unpack that term. Because I think for a lot of people, maybe listeners of your podcast, may think that quality of life means a life that’s without suffering or pain or without impairment or one that is independent. And you know, there’s a lot of values that are underlying there of what we consider normative bodies and functioning. And I think so much of this flies in the face of the huge range of human variation and the way that people thrive and adapt with the bodies we have and with the environments that we’re in. And we also can’t separate what’s different about our bodies and the society that we live in, the communities that we’re a part of. I believe that if people had access to the supports and technology that they need, and if people are treated with respect and accepted as they are, quality of life would look very different from the very strictly pathological lens.

STRAMONDO: I think that Alice is spot on in her discussion of quality of life and sort of the intersection between disability and one’s environment as being sort of the thing that determines quality of life. It’s not just about the presence or absence of disability itself. But looking at the language used in the complaint, I do have something of a concern in that it’s prohibiting explicit kinds of discrimination that might be sort of written into guidelines. But the fact of the matter is, a lot of times, the discrimination that might be going on when you’re talking about triage isn’t this overt, right? And so, that’s my real worry here. For instance, the best available medical evidence is what we’re supposed to make the determination based on. Well, the problem with language around the best available medical evidence is that a lot of times, people smuggle in quality of life considerations by talking about health, right, in that they equate quality of life with health, right?

Alice was just talking about how there’s this assumption that you need certain things to be part of your life in order to have quality of life. And for many, many people, health is one of those things. And so, when you write guidelines that direct physicians and triage committees to look at the best available medical evidence, that’s a vague term, right? That’s a very, very vague set of terms. Does this allow a triage committee or a state writing a set of guidelines to consider someone’s health status when considering whether or not they get life-saving treatment? And that’s, in some circumstances or by some interpretations, a real problem. If you are talking about health status in a way that what you mean is well, I’m going to consider how responsive this person will be to this treatment and whether or not this treatment will be futile for this person, then of course, that’s definitely some objective medical evidence that you want to consider when doing triage. But if what you’re saying when you talk about health status is something more along the lines of well, I’m going to prioritize this person who, after the treatment, will be healthier than this other patient who still will be disabled and unhealthy after the treatment, then that’s just sort of talking about quality of life considerations just using different words.

Interventions and Health Outcomes

The Politics of Autism discusses health care, and explains that autism services can be complicated, creating difficulties for autistic people and their families. 

Teal W Benevides and colleagues have an article in Autism titled "Interventions to Address Health Outcomes among Autistic Adults: A Systematic Review."  The lay abstract:

Autistic adults have more health problems than their same-aged peers. Yet little research has been conducted that focuses on addressing these health problems. In order to guide future research, it is important to know what intervention studies have been done to improve health outcomes among autistic adults. The project team and student assistants read studies that were published between 2007 and 2018 in the online research database, PubMed. We looked for studies published in English, which were peer-reviewed and included (1) an intervention, (2) an outcome that was related to health, and (3) a study group that included autistic adults. We did not include studies that had outcomes about employment (unless there was a health outcome), studies about caregivers or caregiving, or expert opinions about interventions. Of 778 reviewed articles, 19 studies met all of the criteria above. Within these studies, two approaches were found to have emerging evidence for their use in autistic adults: cognitive behavioral interventions and mindfulness-based approaches for improved mental health outcomes. The remaining intervention approaches did not have enough articles to support their use. Many of the outcomes were about reduced symptoms of co-occurring mental health diagnoses (e.g. reduced anxiety, depression). Most of the participants in these studies were male and did not have intellectual disability. Most study participants were adults younger than 40. There are not many intervention studies that address health outcomes among autistic adults. More research is needed on interventions which are desired by the adult autism community and address preferred health outcomes such as increased quality of life or well-being.

Triage Ethics

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all.

People with autism and other disabilities have faced discrimination in organ transplants.  Now they face discrimination in the availability of ventilators.

At Bioethics.net,  Joseph Stramondo argues against giving lower priority in lifesaving care to people with disabilities.

I would argue that this sort of criterion is clearly grounded in a deeply biased quality of life judgment. Unlike supporting a patient’s right to request the withdrawal of life sustaining care or even assistance in dying, denying patients care on the basis of a non-terminal disability is not justified as a way of respecting a patient’s judgment about their own quality of life. Rather, the reason such a person would be denied lifesaving care via triage is because a third-party judge like a physician or policy maker does not believe their life has enough quality to be worth saving in comparison with that of non-disabled others. A person’s self-assessment of their own well-being is deemed irrelevant in the context of triage and, thus, I would argue, any third party assessment of well-being should also be deemed irrelevant.

Of course, there is a significant body of empirical evidence showing that there is a substantial gap between a disabled person’s self-assessment and how their quality of life is judged by folks that have never experienced their disability. Some prominent bioethicists even refer to this as the “disability paradox.” To me, there is little paradoxical about disabled people valuing their own life more than it is valued by non-disabled people making judgments based on stereotype and stigma. To conceptualize it as paradoxical is to wrongly assume that disability inevitably diminishes well-being.

At Crux, Robert P. George speaks to Charles Camosy about the current COVID-19 pandemic.

Some protocols for rationing limited health care resources focus on the relative need of patients and their relative chances for getting better. Others focus on things like age, cognitive ability, and physical capacity. What sorts of ethical considerations should guide hospitals, medical groups, and other institutions who are trying to decide how they will distribute their limited medical resources?

At the core or foundation of the answer to just about every important ethical question is the principle of the profound, inherent, and equal dignity of each and every member of the human family. In making decisions — including hard, even tragic, decisions about distributing limited medical resources — it is critical that we treat every person as equal in inherent worth and dignity to every other person.

We must avoid the temptation to treat some as superior (and others as inferior) because, for example, they are young and strong (rather than old and frail) or able-bodied (rather than physically disabled or cognitively impaired). The temptation to discriminate invidiously will present itself — about that I’ll give you a money-back guarantee.

Some people will want to throw over the radical egalitarianism (all human beings are “created in the image and likeness of God”; “all men are created equal”) of the sanctity of life ethic and replace it with a “quality of life” ethic that is amenable to decision-making by utilitarian calculation. We must be firm in our resistance to anything of the sort.

If some institutions decide to ration health based purely on age or disability, might they face lawsuits for violations US civil rights law?

Yes, our federal civil rights laws (as well as many state statutes) forbid discrimination based on age or disability. To its credit, the U.S. Department of Health and Human Services’s Office of Civil Rights, under Roger Severino, has already spoken forcefully about the applicability of these laws when it comes to the care of patients and the allocation of health care resources. I’m glad they are getting out ahead on these issues, because, as I noted, the temptation to discriminate invidiously will come.

Some people will say, “why should that Down Syndrome person be given a ventilator when it could be given to someone who’s not ‘retarded’ and who can contribute more to society?” A fully sufficient answer should be: “because in fundamental worth and dignity, the Down Syndrome person is every bit the equal of any other person.”

But for some people, that will cut no ice. But here is an answer that will: “Because federal law forbids discrimination based on disability and you or your institution will be sued or prosecuted if you engage in such discrimination.”

Lifespan Approach to Quality of Life Measurement

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

A release from Children's Hospital of Philadelphia:

A new study led by researchers at Children's Hospital of Philadelphia (CHOP) shows that a set of simple questionnaires can help clinicians and families better evaluate the quality of life of people diagnosed with autism spectrum disorder (ASD). The newly-developed tool is designed for children, adolescents, and adults on the autism spectrum, and early findings show where clinicians can learn more about how to support the needs of autistic individuals by directly asking them these critical questions. The findings were published online this month by the journal Autism Research.

While clinical researchers often focus on measuring diagnostic criteria or behavioral impairments, autistic self-advocates, family members, and community organizations have long called for a greater emphasis on measuring specific and practical areas that, if properly addressed, could then help people on the autism spectrum achieve a better quality of life. Several methods on how to accomplish this have been proposed, but they have not necessarily addressed topics covering a person's entire lifespan or had sufficient data on women and girls.

"Individual studies have examined specific quality of life measurements for people with autism, but we believed there was an opportunity to create an approach that could measure quality of life across multiple areas, in a way that can grow throughout their lifetime as needs change," said Laura Graham Holmes, PhD, a postdoctoral researcher at the A.J. Drexel Autism Institute at Drexel University who led the research while she was a postdoctoral fellow at the CHOP Center for Autism Research. "We wanted to be sure this tool encompassed a variety of domains, including physical and mental health, relationships, and subjective well-being, so we could begin to understand on a more nuanced level the struggles and successes that autistic people experience throughout their lives."

The study team developed and tested an autism-specific lifespan quality of life measurement tool, using the National Institutes of Health Parent-Reported Outcomes Measurement Information System (PROMIS®) as its foundation. The new tool is named the PROMIS Autism Battery - Lifespan (PAB-L). After reviewing each area and receiving feedback from autistic people and their families as well as autism experts, the tool was administered for autistic children ages 5-13 (reported through parent proxy), adolescents ages 14-17 (parent proxy and/or self-reported), and adults ages 18-65 (self reported) and then results were compared with the general population.

A total of 912 participants completed the tool's surveys online. The study measured feasibility, and participants reported that the survey was easy to understand, covered important topics, and may even change the way an individual or parent manages their autism support programs or clinical care based on the results.

While some individuals reported strengths, on average, people of all ages on the autism spectrum reported greater challenges and lower quality of life compared with their peers without an autism diagnosis. In particular, they reported lower life satisfaction, less social support and more social isolation, were more likely to exhibit emotional distress through symptoms like anger and anxiety, and were more likely to have sleep problems. Women and teenaged girls on the autism spectrum reported higher levels of anxiety and sleep problems than their male counterparts. As this is the first study to use this tool, more work is needed. However, these measurements give researchers an important starting point.

"This study demonstrated that assessing quality of life among patients of different ages and genders is possible, and that it's meaningful," said Judith S. Miller, PhD, a psychologist in the Department of Child and Adolescent Psychiatry and Behavioral Sciences, a senior scientist and training director in the Center for Autism Research at CHOP and senior author of the study. "We believe that these findings provide an important foundation to answer some very important questions about how to support the quality of life for people with autism, including those who have been historically under-represented in clinical research."

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Graham et al, "A lifespan approach to patient-reported outcomes and quality of life for people on the autism spectrum." Autism Res, online 10 March 2020. DOI: 10.1002/aur.2275.