Undiagnosed and Older

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

Rhiannon Evans at The Guardian:

There has been a huge shift in awareness around neurodiversity recently, with improved provision for children in schools and increased middle-age diagnosis and detection in women. Still, one group has remained underserved when it comes to support; adults over 60. A recent study estimated that 89-97% of autistic people over 60 are undiagnosed, leading experts in the field, such as Dr Louise Rutter (who last year co-authored a report on the subject for the British Psychological Society) to brand them a “neglected generation”.

The figures are for the UK, but it is likely that the American figures are similar.

First posted here in September: 

Gavin R. Stewart1 and Francesca Happé, "Aging Across the Autism Spectrum," Annual Review of Developmental Psychology  Vol. 7:461-484 (Volume publication date December 2025) 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.

Workplace Experience

 In The Politics of Autism, I discuss the employment of people on the autism spectrum.

 A release from NEXT for Autism

:A new national survey from NEXT for AUTISM, a leading nonprofit dedicated to transforming services for autistic adults, offers one of the first comprehensive looks at workplace experience from the perspective of autistic employees themselves – revealing the everyday practices that support autistic employees – and the gaps that stand in the way.

Based on responses from more than 400 currently or recently employed autistic adults across the U.S., the data finds that the most important factor shaping success for autistic employees isn't workplace policy – it's their direct manager.

 ta shows that employees are turning to managers, not HR, as their primary point of trust: 49% report disclosing their autism diagnosis to a manager or supervisor, compared to 44% who disclose to HR. Simultaneously, nearly 8 in 10 respondents say their manager trusts them, and that relationship shapes whether employees feel safe communicating how they work, accessing support, and contributing fully at work.

The report, Inside the Autistic Workforce: A National Survey of Autistic Employees on Their Workplace Experience – and What Employers Need to Know, was developed by NEXT for AUTISM in partnership with Sago and funded by the Anita Bhatia Foundation for Tomorrow. It captures insights from autistic employees working across industries – from data scientists and occupational therapists to bartenders, paramedics, and overnight restockers – and offers a clear blueprint for the conditions that help autistic employees contribute, perform, and stay at work. Uniquely, the survey was developed in collaboration with autistic and neurodivergent staff, advisors, and subject-matter experts to ensure that the questions and analysis reflected authentic workplace realities.

The findings challenge long-held assumptions about disclosure, accommodations, performance, and retention. They show that the conditions shaping workplace experience are often neither complex nor costly, but instead rooted in how managers communicate, build trust, and adapt to individual needs.

"Managers are the difference between success that's sustainable and success that quietly drains," said Gillian Leek, CEO of NEXT for AUTISM. "Autistic employees are already contributing across the workforce, but too often they're doing it while managing challenges that go unseen. When managers build trust and make it easier for employees to communicate how they work, that's when organizations get the full value of the talent they've hired."

Key findings from the survey include:

Many Autistic Employees Are Contributing at a Cost
While many respondents report strong workplace outcomes, the findings reveal a critical tension: performance is often sustained through significant, invisible effort.72% feel fairly compensated

• 70% say their role matches their abilities
• 73% feel supported and respected at work

At the same time:80% report masking and emotional exhaustion as a challenge
More than half cite sensory demands and communication overload as highly challenging

For many autistic employees, doing well at work doesn't come without a cost. Masking behaviors—suppressing natural responses, scripting interactions, and managing sensory overload—can consume as much mental energy as the job itself.

Managers Are the Difference Between Stability and Chronic Strain
Throughout the data, one factor stands out above all others: the direct manager.

Managers shape whether employees feel safe disclosing their diagnosis, asking for support, and working in ways that align with their strengths. In practice, this makes managers – not policies – the front line of inclusion, retention, and performance.

The practices autistic employees associate with effective managers: empathy, active listening, clear communication, willingness to accommodate, and consistent follow-through – are the fundamentals of competent leadership. In return, managers are rewarded with loyal, dedicated, and creative employees.

The Hidden Gap in Workplace Support
The survey highlights a gap between the availability of workplace support and employees' ability to access it.

• 41% don't know what supports are available without disclosing
• 36% are unfamiliar with the range of workplace accommodations once hired
• 31% are unfamiliar with legal rights to reasonable accommodations

As a result, many employees manage challenges independently, even when support is available. Nearly 7 in 10 respondents report relying on support outside of work to navigate workplace expectations and sustain employment.

Notably, respondents report turning to social media for workplace guidance and support at rates comparable to therapists and professional support providers.

Workplace Experiences Are Not Equal
Certain groups consistently report more acute challenges. Autistic women face a workplace environment that is consistently less responsive to how they communicate and what they need:54% are unsure how or when to disclose (vs. 32% of men)
53% feel safe being themselves at work (vs. 73% of men)
48% fear being labeled/stereotyped (vs. 35% of men)

A Clear Path Forward for Employers
The survey findings show that hiring is just the beginning. What shapes whether autistic employees contribute fully and stay in their jobs is the day-to-day reality of how workplaces actually operate. The report offers employer recommendations that can make an immediate difference:

• Equip managers to communicate clearly, build trust, and adapt to different working styles
• Make support visible before employees have to ask for it
• Build clear expectations, flexibility, and predictable structures into everyday work
• Listen to your autistic employees and treat their feedback as data, not complaints

"These are the fundamentals of how good workplaces operate," said Leek. "When organizations get this right, they don't just support autistic employees, they create environments where all people can succeed."

The full report is available at NEXTforAUTISM.org/SurveyReport. A companion infographic is available.

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).

988, Crisis Counselors, and Autistic People

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

Corinne Purtill at LAT:

Free, largely confidential and available 24 hours a day via call, text or online chat, the 988 Lifeline — formerly the National Suicide Prevention Lifeline — is among the most accessible and effective suicide prevention tools in the U.S.

But there are challenges for autistic people, who may process information slowly or misunderstand what the crisis counselor is saying.

“Autistic people are misunderstood and have difficulty conveying what they’re going through in a way that’s productive,” said Lisa Morgan, founder and co-chair of the Autism and Suicide Prevention Workgroup, a research collective dedicated to the issue. “The crisis counselors try to help, but end up kind of just landing wrong.”

...

Morgan, who is herself autistic, and her research partner Brenna Maddox, a clinical psychologist and co-chair of the workgroup, set out to help the 988 system do just that.

In 2023, they published a guide to help crisis workers assess whether the person they are talking to could be on the autism spectrum. It also offered specific conversation strategies that could improve the call: asking if the person has any special interests; asking clear, short, direct questions; allowing ample time for the person to respond; and being open to the caller’s own suggestions for what works for them. The final page of the guide is a single sheet of tips that crisis workers can print out and hang by their desk.

“An autistic individual may say that spinning quarters is a good distraction technique for them,” reads one tip. “Even if that sounds unusual to the crisis center worker, it is still a valid and acceptable answer.”

The following year, they published a detailed guide for autistic adults on what to expect when contacting 988. This includes the likelihood of a wait time (the 988 number connects to a network of more than 200 individual call centers around the U.S. and it can take a few minutes to find an available counselor) and how to sign off on a call or text chat. Earlier this year, the workgroup released a version for autistic youth and their caregivers.

Then last year, they achieved a goal long in the works: direct training for 988 counselors. Morgan and Maddox conducted three one-hour webinars for Vibrant that covered the fundamentals of autism, autism-specific suicide warning signs and support strategies for autistic people in crisis.

 

Literature on Autism and Aging

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.

Mokhwelepa, L.W., Sumbane, G.O. & Ngwenya, M.W. The dynamic trajectory of autistic life and its changing challenges: a scoping review. BMC Psychiatry 25, 769 (2025). https://doi.org/10.1186/s12888-025-07212-5

Abstract

Background

There is a noticeable knowledge vacuum on the ways in which autism interacts with the difficulties associated with aging, even though in recent decades there has been a growing recognition of the different needs and experiences of those on the autistic spectrum. Importantly, experiences across earlier life stages such as youth and young adulthood also influence later outcomes and warrant consideration within this dynamic trajectory, meaning the ongoing and evolving developmental path individuals follow throughout life.

Objectives

This study aimed to review the existing literature on the unique needs, challenges, and experiences of autistic adults as they progress into later stages of life.

Methodology

The scoping review was carried out by following a structure that included defining the research topic, finding pertinent studies, choosing studies, charting data, and ultimately compiling, summarizing, and synthesizing the findings, the scoping review was carried out. PubMed, PsycINFO, Google Scholar, and ScienceDirect are the databases that were used to perform an exhaustive search of the literature from 2010 to 2023. Studies were screened for inclusion based on predefined criteria.

Results

Despite an initially large dataset, only a limited number of studies directly addressed the intersection of autism and aging in sufficient depth. This review yielded only two themes: (1) Challenges experienced by adults with autism when aging; (2) interventions and support strategies.

Conclusion

The important need for greater comprehension of the relationship between autism and aging was highlighted by this study. It exposed a wide range of difficulties that autistic adults encounter as they age, such as inequalities in healthcare and problems integrating into society. This review will contribute to a deeper understanding by highlighting the evolving challenges, unmet needs, and support mechanisms required by autistic adults as they age, offering insights for research, policy, and practice.

The Physical and Mental Health of Autistic Adults

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

Lay Abstract:

Autistic adults often face a range of physical and mental health conditions, but the relationship between these two types of health issues is not well understood. Our study looked at how often physical and mental health conditions in autistic adults occurred. We also examined the relationships between these conditions using a method called psychometric network analysis. We surveyed 327 autistic and 274 non-autistic adults, aged 30–90 years, about potential health conditions they faced and the perception of the quality of their health, also known as health-related quality of life. We found that autistic adults had a lower health-related quality of life and reported higher rates of all mental health conditions. Mood (45%), anxiety (22%), and personality disorders (21%) were most common. Autistic adults were between six and 34 times more likely to have these mental health conditions compared to non-autistic adults. In terms of physical health, autistic adults reported higher rates of bowel conditions (27%), allergies (48%), hypothyroid conditions (6%), and less robustly of strokes (CVA/TIAs; 3%), and rheumatic conditions (31%)— and a two- to four-times higher risk than non-autistic adults. Using psychometric network analysis, we found that mental health conditions in autistic adults are closely linked, showing how complex their health challenges are. While there was no single condition that connected physical and mental health in particular, we found several links between the two. These findings emphasize the need for improved healthcare and broader societal changes to enhance the well-being of autistic individuals.

From the article:

In the physical health domain, bowel conditions, respiratory conditions, and allergies showed most connections to other conditions in the network, suggesting they may be key targets for intervention. Hypothetically, they add to the stress that autistic adults already face and deteriorate other physical and mental health problems (Grant et al., 2022). Evidently, such conditions might also be a consequence of stress and MHCs (Ohrnberger et al., 2017). In both cases, improved medical care might reduce the burden for autistic adults. As noted by others, it is essential to take away existing healthcare barriers (Malik-Soni et al., 2022; Mason et al., 2019; Walsh et al., 2020; Warreman, Ester, et al., 2023). The SPACE framework (Sensory needs, Predictability, Acceptance, Communication, and Empathy) highlights principles for making healthcare more accommodating (Doherty et al., 2023). First steps can be in simple solutions such as increasing consultation time to adapt to longer processing time, securing consistent healthcare providers to accommodate a need for consistency and familiarity, and embedding e-Health solutions to ease communication (Mason et al., 2019; Warreman, Ester, et al., 2023). In addition, addressing the “triple empathy problem”—the mutual misunderstandings between autistic individuals and healthcare providers—might reduce healthcare avoidance and improve interactions (Shaw et al., 2024).

 

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.

Barriers to Adult Diagnosis

Abu-Ramadan, T.M., Tassone, A.U., Andrzejewski, T.M. et al. Diagnostic Experiences and Barriers to Diagnosis Among Autistic Adults in the United States: Associations with Diagnostic Timing and Gender. J Autism Dev Disord (2025). https://doi.org/10.1007/s10803-025-06986-7

Understanding Autistic experiences with autism diagnostic processes in the United States is an important priority, including whether assessment experiences differ by diagnostic timing (whether individuals were diagnosed as a child or adult) and gender. Autistic adults (N = 129) who self-consented to participate in online research completed a survey assessing various domains of assessment experiences (e.g., factors leading to an assessment, assessment visits, emotional reactions to diagnosis, post-diagnostic support, diagnostic satisfaction, diagnostic barriers). Analyses examined correlates of diagnostic satisfaction and differences in diagnostic experiences by diagnostic timing and gender (cisgender women, cisgender men, gender diverse group). Fewer barriers to diagnosis, receiving a written report, seeing fewer providers, receiving post-diagnostic resources, and feeling relieved in response to the diagnosis related to higher diagnostic satisfaction. Adult-diagnosed individuals were more likely to raise the question of whether they were Autistic themselves, have mental health concerns contribute to seeking an assessment, and have more positive emotional reactions to the diagnosis compared to child-diagnosed individuals. Barriers and desired post-diagnostic supports also differed by diagnostic timing. Cisgender women and individuals in the gender diverse group were more likely to feel relieved in response to their autism diagnosis. The gender diverse group was most likely to desire post-diagnostic support regarding trauma and suicidality and reported the highest number of barriers to diagnosis. Diagnostic timing and gender relate to a range of diagnostic experiences. Findings highlight the importance of enhancing post-diagnostic support and reducing barriers to assessment, particularly across Autistic people of different genders.

From the article:

Experiencing more barriers to diagnosis was associated with lower overall diagnostic satisfaction (Lewis, 2017), with barriers differing across diagnostic timing and gender. Although total barrier scores did not differ across diagnostic timing, those diagnosed in adulthood reported higher levels of barriers regarding cost and lack of health insurance compared to those diagnosed in childhood. Financial barriers were more commonly reported by individuals diagnosed in adulthood, aligning with prior research identifying cost as a key obstacle to autism assessment for adults (de Broize et al., 2022). These barriers may include difficulties finding an in-network provider who conducts adult assessments, travel expenses, and indirect costs such as lost wages or childcare. However, research suggests these concerns are also widespread among caregivers of Autistic children (Smith-Young et al., 2025). Thus, cost may be a structural barrier in autism diagnostics throughout the lifespan, necessitating policy changes like insurance reform, expanded public services, and financial assistance for adults and families seeking evaluations. Child-diagnosed individuals reported higher levels of barriers about understanding what the provider is saying, and not seeing themselves in the current idea of what autism is. There may be fewer resources for disclosing autism diagnosis to youth (Smith et al., 2018), although recent research has sought to address this gap in partnership with Autistic people (Almog et al., 2024).

 

Early Employment Disparities

 In The Politics of Autism, I discuss the employment of people on the autism spectrum.

Yon-Hernández, J.A., Gonzales, C., Bothra, S. et al. Early Employment Outcomes in Autistic and Non-autistic Youth: Challenges and Opportunities. J Autism Dev Disord (2025). https://doi.org/10.1007/s10803-025-07001-9.  The abstract:

Autistic youth often encounter significant barriers in securing employment, including difficulties with job acquisition, limited workplace support, and reduced access to structured employment services. This study examined early employment experiences in cognitively able autistic and non-autistic youth, with a focus on job characteristics and the associated factors of employment status. Participants included 99 individuals (51 autistic, 48 non-autistic) aged 18–23. Open-ended responses were coded to characterize first job experiences, including job setting, duration, hours worked, support received, sector, and job acquisition method. Group differences were assessed using chi-square tests. Logistic regression was used to examine the predictors of employment outcomes, including IQ, executive functioning, adaptive functioning, and education level. Results revealed notable differences between groups, with 67% of autistic participants having had a first work experience compared to 86% of non-autistic participants. When unpaid experiences (such as WorkAbility/internships) were excluded, this gap widened to 50% versus 78%. Autistic participants were significantly less likely to obtain jobs through competitive hiring and were more likely to work in sales/retail-related roles, whereas non-autistic participants exhibited greater job diversity and career-oriented positions. Personal connections were critical to job acquisition for autistic individuals, although structured employment programs were also a key pathway. Executive functioning difficulties were significantly associated with lower employment likelihood. Early employment disparities persist among autistic youth, particularly in access to competitive and career-track jobs. Interventions that support executive functioning, expand structured employment options, and leverage family and social networks may enhance employment success during the transition to adulthood.

About Self-Diagnosis

In The Politics of Autism, I discuss the uncertainty surrounding estimates of autism prevalence.   Self-diagnosis is cotnroversial,  but may be helpful in explaining age differences.

Sol Smith at Psychology Today:

Even though studies have shown one-to-one correlations between self-identified autistics and professionally diagnosed autistics when it comes to symptomology, stigma, employment history, and social challenges (McDonald, 2020), these gatekeepers stand strong at their self-appointed posts, letting no one in without their personal permission.

The truth of the matter is that we know that those who are self-diagnosing are more educated on the subject of autism than those who are not; we know that those who are self-diagnosing are struggling in all the same ways as those who have been diagnosed; and we also know that autism is severely underdiagnosed, despite what the colloquial skeptic ferociously types in the comment section. The barriers to diagnoses are many, but in one study (Lewis, 2017), the single biggest barrier cited by autistic individuals is the fear of not being believed.

Shifts and awakenings happen. Cultural awareness expands. What appears to be a trend to the casual social media user is actually a wealth of answers, a source of empathy, and a toolkit for self-understanding to a hidden, marginalized population in desperate need of a little compassion.

Lewis, L. (2017). A Mixed Methods Study of Barriers to Formal Diagnosis of Autism Spectrum Disorder in Adults. Journal of Autism & Developmental Disorders, 47(8), 2410–2424. https://doi.org/10.1007/s10803-017-3168-3


McDonald, T. A. M. (2020). Autism Identity and the “Lost Generation”: Structural Validation of the Autism Spectrum Identity Scale (ASIS) and Comparison of Diagnosed and Self-Diagnosed Adults on the Autism Spectrum. Autism in Adulthood : Challenges and Management, 2(1), 13–23. https://doi.org/10.1089/aut.2019.0069

Adult Autism Prevalence

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

Nidhi Subbaraman at WSJ:

Overall, the rate of autism in people 18 or older more than doubled between 2011 and 2019, from 4.2 per 1,000 to 9.5 per 1,000, according to an analysis of Medicaid data published in the journal JAMA Psychiatry in 2023.

Researchers saw the most rapid growth in adults between the ages of 26 and 34, according to a study, published in the journal JAMA Network Open in 2024, that analyzed U.S. health records and insurance claims for more than nine million individuals a year from 2011 to 2022. That group’s rate of autism increased from 0.7 per 1,000 people in 2011 to 3.7 per 1,000 in 2022.

Some of this growth comes from autistic children aging into adulthood.

For adults seeking evaluations for the first time, scientists attribute the rise to a variety of factors.

Social media has increased awareness of autism. Autism has shed the stigma it used to hold. The definition of the condition has expanded over time to include a broader range of behaviors. And some parents who have children diagnosed with autism then recognize their own challenges and seek out evaluations, said Michelle Gorenstein-Holtzman, a clinical psychologist who works with adults at the NewYork-Presbyterian/Weill Cornell Medical Center and the Center for Autism and the Developing Brain.

Three years ago, before she joined, the center did one adult autism evaluation a month. Now Gorenstein-Holtzman does two a week.

Finding More Autism Among Adults

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

Until recently, there was very little research into prevalence among adults.

And getting a diagnosis as an adult is difficult.

Grosvenor LP, Croen LA, Lynch FL, et al. Autism Diagnosis Among US Children and Adults, 2011-2022. JAMA Netw Open. 2024;7(10):e2442218. doi:10.1001/jamanetworkopen.2024.42218

Question How have autism diagnosis rates changed over time among children and adults seeking care from a network of health systems in the US?

Findings In this cross-sectional study of electronic US health and insurance claims records for over 9 million individuals per year from 2011 to 2022, relative increases in autism diagnosis rates were greatest among young adults compared with all other age groups, female compared with male individuals, and some racial and ethnic minority groups compared with White individuals among children but not adults.

Meaning Patterns of increase in autism diagnosis rates reflect a need for expanded health care services and continued research on sociodemographic disparities among this growing population.

Abstract

Importance An improved understanding of autism spectrum disorder (ASD) prevalence over time and across the lifespan can inform health care service delivery for the growing population of autistic children and adults.

Objective To describe trends in the prevalence of ASD diagnoses using electronic records data from a large network of health systems in the US.

Design, Setting, and Participants This cross-sectional study examined annual diagnosis rates in health records of patients in US health systems from January 1, 2011, to December 31, 2022. Eligible individuals were included in the study sample for a given calendar year if they were enrolled in a participating health system for at least 10 months out of the year. Data were extracted from 12 sites participating in the Mental Health Research Network, a consortium of research centers embedded within large, diverse health care systems.

Main Outcome and Measures Diagnoses of ASD were ascertained using International Classification of Diseases, Ninth Revision (ICD-9) and International Statistical Classification of Diseases and Related Health Problems, Tenth Revision (ICD-10) revision codes. Annual diagnosis rates were calculated as the number of unique members diagnosed, divided by the total members enrolled.

Results A total of 12 264 003 members were enrolled in 2022 (2 359 359 children aged 0 to 17 years [19.2%]; 6 400 222 female [52.2%]; 93 002 American Indian or Alaska Native [0.8%], 1 711 950 Asian [14.0%], 952 287 Black or African American [7.8%], 2 971 355 Hispanic [24.2%], 166 144 Native Hawaiian or Pacific Islander [1.4%], and 6 462 298 White [52.7%]). The ASD diagnosis rate was greatest among 5-to-8-year-olds throughout the study period and increased by 175% among the full sample, from 2.3 per 1000 in 2011 to 6.3 per 1000 in 2022. The greatest relative increase in diagnosis rate from 2011 to 2022 occurred among 26-to-34-year-olds (450%) and increases were greater for female vs male individuals among children (305% [estimated annual percentage change (EAPC), 13.62 percentage points; 95% CI, 12.49-14.75 percentage points] vs 185% [EAPC, 9.63 percentage points; 95% CI, 8.54-10.72 percentage points], respectively) and adults (315% [EAPC, 13.73 percentage points; 95% CI, 12.61-14.86 percentage points] vs 215% [EAPC, 10.33 percentage points; 95% CI, 9.24-11.43 percentage points]). Relative increases were greater in racial and ethnic minority groups compared with White individuals among children, but not adults.

Conclusions and Relevance In this cross-sectional study of children and adults in the US, ASD diagnosis rates increased substantially between 2011 and 2022, particularly among young adults, female children and adults, and children from some racial or ethnic minority groups. Diagnosis prevalence trends generated using health system data can inform the allocation of resources to meet the service needs of this growing, medically complex 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

Autism and Emotion

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

One is that autistic people lack empathy and emotion.

A release from Rutgers:

What does giddiness or joy or anger feel like?

To a group of autistic adults participating in a Rutgers study, giddiness manifests like “bees”; small moments of joy are like “a nice coffee in the morning” that yields “a sense of elevation”; anger starts with a “body-tensing” boil, then headaches.

Contrary to common perceptions and years of research that autistic people can’t describe their emotions or often have muted emotional responses, a Rutgers study published in the American Journal of Occupational Therapy concludes that  many autistic adults are in fact acutely aware of their feelings and can label them in vivid, often colorful detail.

“What if everything we know about autism is wrong?” said Aaron Dallman, an assistant professor of occupational therapy at the Rutgers School of Health Professions and the author of the study.

“We spend all this time problematizing autism, rather than doing the work to understand what it’s like to be autistic,” he said. “The popular idea that autistic people don’t have rich, emotional lives is simply not true.”

To catalog how young autistic adults describe their emotions and navigate their interactions with others as well as identify potential strategies to bridge the emotional chasm between autistic and nonautistic people, Dallman conducted a series of focus groups designed to understand individual experiences.

Twenty-four autistic adults ages 18 to 35 participated in one of six video conference focus group interviews. Discussions were facilitated by Dallman and included questions related to how emotions are manifested physically, what participants feel during therapy sessions and how participants communicate about their emotions with others.

Transcripts from the sessions were created and anonymized by a graduate research assistant. Data was then coded and analyzed using a qualitative research methodology that explores how individuals make sense of their experiences.

Participants overwhelmingly reported that typical emotion words such as “happy” or “sad” don’t adequately characterize their complex emotional experiences. Instead, descriptions of emotions included rich, dynamic language and often combined traditional emotional words with references to physical sensations, particularly in the stomach.

Participants also reported that “affective contact” – exchanges of feelings between individuals – with nonautistic people can be difficult and is particularly challenging when nonautistic people misinterpret the emotional expressions of an autistic person.

“I’ve had people say, like, ‘Wow, you look really happy right now,’ when I’m just kind of chilling out,” one participant said. “I’m not sure what about me looks extremely happy.”

Since the first descriptions of autism, difficulties with human interaction have been considered a common feature of autism spectrum disorder. Dallman said confusion arises when therapists or nonautistic people try to supplant neurotypical definitions of emotions – a smile must mean “happy,” a frown “sad” – when these labels don’t apply to autistic people.

Eye contact is a perfect example, Dallman said. For nonautistic people, locking eyes suggests social interest but is often experienced as unpleasant by autistic people. Similarly, autistic people often use stimming techniques – repetitive actions, such as hand flapping or rocking, to regulate emotions – that can be viewed negatively by nonautistic individuals.

Dallman said his findings could point the way to new autism therapy strategies. Instead of urging changes to how autistic people communicate, he said, anyone who has an autistic person in their life should work instead to improve mutual understanding between those who have diverse modes of experiencing the world.“We don't have to change everyone, but let's think about changing the classroom, or caregivers’ attitudes, so they understand what messages an autistic individual is communicating and how they express their emotions,” Dallman said. “It’s time for our communities to embrace the unique perspectives and 
contributions of autistic community members.”

 

The study was published in the American Journal of Occupational Therapy.

The Journey to an Adult Autism Diagnosis Is Not Easy

In The Politics of Autism, I discuss the uncertainty surrounding estimates of autism prevalence.  Although diagnosis typically takes place in childhood, some adults have sought it out.

 Marina Sarris at Forbes:

While autism helped to explain aspects of their lives, some adults say, the ease and process of getting a diagnosis varied widely. Some say that their insurance companies helped them find the right doctor or psychologist to evaluate them. Others, however, say that they had problems with insurance, cost, or finding a healthcare provider who was experienced with adult autism.

Autism appears in early childhood, when it’s usually diagnosed, and many autism specialists only see children and teens. Some psychologists and psychiatrists who just see adults may not be experienced in diagnosing autism.

And autism may look different in adults. They may no longer have the “red flags” of childhood autism, such as poor eye contact and problems having a conversation, said psychologist Vanessa Bal, Ph.D., during a webinar for SPARK.

That may be because their social communication skills have developed over time, she said. Also, some adults have learned to camouflage, or hide their autism traits, in order to fit in during social situations, Bal said. Camouflaging makes a person’s autism appear less visible to others.1, 2

“For autistic adults, the presentation of autism, what autism ‘looks like,’ may look quite different from what people in the general public might expect, and even professionals who are more familiar with autism in children,” Bal said.

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.

Independence and Interdependence

 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.

Moser, C., Smith DaWalt, L., Burke, M. M., & Taylor, J. L. (2024). Emerging adulthood in autism: Striving for independence or interdependence? Autism, 0(0). https://doi.org/10.1177/13623613241245647

While some autistic youth have attitudes consistent with Arnett’s conceptualization of emerging adulthood, feeling as though they need more time to gradually move toward adulthood (Cribb et al., 2019), others consider themselves to be adults immediately after adolescence (e.g. 18 years of age; Anderson et al., 2016). This belief may lead to unattainable expectations, as most people achieve more traditional milestones of adulthood later in life (e.g. 29 years of age; Arnett, 2014). Like their non-autistic peers, it is also unclear to what extent independence should be considered a marker of adulthood in this group—particularly given the varied opinions autistic emerging adults have about the importance of self-sufficiency. For instance, although some autistic youth hope to live on their own, others report no desire to move out of the parental home (Anderson et al., 2016). Moreover, autistic emerging adults who desire greater independence can find it challenging to achieve this goal without support (Cribb et al., 2019; Sosnowy et al., 2018).

Thus, to support autistic youth in reaching their maximum potential and achieving their goals during emerging adulthood and beyond, it may be helpful to widen our focus from promoting independence, to promoting independence and interdependence. While the term interdependence has been used in various contexts, here we conceptualize interdependence as a mutual dependency between two or more people and is underscored by the notion that support should not stifle autonomy (Condeluci, 1995). Drawing from other scholars (e.g. Settersten et al., 2015), we argue that no one acts entirely independently, and thus, independence and interdependence co-occur within all people (autistic or not). Furthermore, individuals demonstrate varying degrees of independence and interdependence across domains of life and stages of development. For instance, while some emerging adults may prefer a high degree of interdependence throughout their lifespan, others may desire some degree of interdependence to gain more self-sufficiency in later adulthood (e.g. living independently).

Autism CARES Reauthorization

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

Anne Roux at the Policy Impact Project of the AJ Drexel Autism Institute:

The federal Autism CARES Act, which has existed for the past 17 years, is due for renewal by September 30, 2024. This law authorizes funding and guidance for autism surveillance, training, and research programs. Before these programs began in the early 2000s, there was little to no policy that directly addressed autistic people’s needs. Thanks to the establishment of the CDC’s Autism Developmental Disabilities Monitoring (ADDM) program, research and policy activities have grown exponentially, as ADDM quantified the dramatic increase in autism prevalence – now 1 in 36 children.

Findings from scholarly activity, and the aging of the earlier cohorts of autistic youth, have generated new thoughts regarding the focus of Autism CARES Act investments. In recent months, leading autism advocacy organizations have issued statements and provided testimony with recommendations for updates to the Autism CARES Act.*

...

Some proposals also call for restructuring how recommendations for autism research funding are made and how autism policy is coordinated.

Our own services research at the Policy and Analytics Center receives funding through the Autism CARES Act. This funding is critical because services research, which focuses on services that are needed and used by autistic people, has always been allocated less than 10% of autism research funding. This means there is limited research funding focused on improving people’s functioning and quality of life. We have used this funding to advance understanding of the needs of autistic transition-age youth, the needs of autistic individuals who have been historically under-represented in research, and physical health issues common among autistic people. This funding also partly supports publication of the National Autism Indicators Reports which advise decisionmakers and advocates on how autistic individuals and their families are faring. As such, we are uniquely positioned to speak to how the Autism CARES Act could better address the needs of autistic transition-age youth and adults.

Our recommendations:

We concur with the need for increased services research and policy initiatives focusing on:

• autism care, particularly in the areas of adult diagnosis, which is often prohibitively expensive yet required for program eligibility; mental health; and delivery of physical health services in ways that are appropriate for the sensory and cognitive needs of autistic individuals
• the communication needs of non-speaking individuals
• daily life challenges of autistic adults, including accommodations for sensory needs
• an emerging crisis stemming from limited systems-level capacity to support autistic individuals as they age, particularly those who have aging care partners

We concur with the need for research to improve the system of care for autistic individuals who require round-the-clock support (both long-term and intermittent, depending on people’s needs); and we add the need for research to also improve the system of care for autistic individuals who do not meet eligibility requirement for care given absence of a discrete intellectual disability (but who often have severe and persistent mental illness that interferes with functioning).

We further recommend research and policy focusing on:

• Effective supports (e.g., financial, respite, training, emotional) for families who are the primary providers of care for autistic people who cannot live on their own, or who cannot find or fund accessible and safe living arrangements in a place of their own. These needs are exacerbated by long wait lists for Medicaid home- and community-based services, a significant shortage of direct support workers, and difficulty finding affordable housing and funding for rental assistance.
• Understanding of capacity and efficacy of public health insurance mechanisms which are the primary funding source for care of autistic individuals, including investigation of the large numbers of young autistic persons receiving dual Medicaid-Medicare benefits.
• Cross-system capacity to deliver services and supports in the areas of employment, housing, and planning for the transition into adulthood.

*We reviewed recommendations from the Autism Society of America, the Association of University Centers on Disability, Autism Speaks, and the Autism Science Foundation

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Neurodivergence in Adulthood

 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.

But there are also positive stories of autistic adults, including those who received their diagnosis later in life. 

Alexandra Del Rosario at LAT:

For Tallulah Willis, an Instagram throwback about her father, Bruce Willis, evolved into a public conversation about her experience with autism.

Tallulah, the 30-year-old daughter of the “Die Hard” star and his ex-wife, actor Demi Moore, revealed over the weekend that she was diagnosed with autism last year. On Instagram, she posted a video of her younger self in her father’s arms as he answers questions at a red-carpet premiere . In the clip, the younger Willis runs her hands over her father’s head, touching his ears.

“Tell me your [sic] autistic without telling me your [sic] autistic 😂,” she captioned her throwback post.

While the Instagram video garnered multiple comments expressing love for the tender father-daughter moment, it also prompted responses from people in the autism community, including parents whose children were diagnosed at an early age and a psychologist who specializes in neurodivergent conditions.

Meet Kendall Griffin, a neurodivergent college student at Pepperdine University! My son Joshua Pitney co-directed this mini-documentary for Big Heart Toys.

Kendall highlights the positive impacts that accommodations in university have on her learning experience, which other neurodivergent students may relate to! Kendall’s journey portrays the intersect of mental health and finding the freedom to be “comfortably neurodivergent.” While seeking the security to be herself, build connections, and pursue her passions – particularly in theater – she uncovers the beauty and strength within her.   Kendall’s answer to creating a more accepting world? “Showing compassion, love, and understanding – even if you don’t understand – it goes a long way.”

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Housing in Massachusetts

 In The Politics of Autism, I write:

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.

From BNN:

My daughter’s discharge from a dayhab program threw into sharp relief the grim issue that many families like ours face – a system ill-equipped to serve the burgeoning number of autistic adults. It’s a wake-up call to the urgent need for housing solutions. The Massachusetts Department of Developmental Services (DDS) and its vendors, in their inability to provide necessary support, stand testament to this critical deficiency.

The failing of the state in predicting the surge in demand for housing, despite the availability of special education data, has snowballed into a crisis. Analysis by Autism Housing Pathways (AHP) augurs a considerable number of young adults requiring group home placements and supportive housing units annually. The state does have a supportive housing program that could potentially be scaled up to meet this demand, but the challenge lies in overcoming the lack of political will to channel sufficient funding into these housing and service programs.