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.

Former CDC Directors Denounce RFK Jr.

In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.  A top antivaxxer is HHS Secretary RFK Jr. He is part of the "Disinformation Dozen." He helped cause a deadly 2019 measles outbreak in Samoa.

Several former CDC directors under presidents of both parties at NYT:

By William Foege, William Roper. David Satcher, Jeffrey Koplan, Richard Besser, Tom Frieden, Anne Schuchat, Rochelle P. Walensky, and Mandy K. Cohen

C.D.C. is an agency under Health and Human Services. During our respective C.D.C. tenures, we did not always agree with our leaders, but they never gave us reason to doubt that they would rely on data-driven insights for our protection, or that they would support public health workers. We need only look to Operation Warp Speed during the first Trump administration — which produced highly effective and safe vaccines that saved millions of lives during the Covid-19 pandemic — as a shining example of what H.H.S. can accomplish when health and science are at the forefront of its mission.

The current H.H.S. leadership, however, operates under a very different set of rules. When Secretary Kennedy administered the oath of office to Dr. Monarez on July 31, he called her “a public health expert with unimpeachable scientific credentials.” But when she refused weeks later to rubber-stamp his dangerous and unfounded vaccine recommendations or heed his demand to fire senior C.D.C. staff members, he decided she was expendable.

These are not typical requests from a health secretary to a C.D.C. director. Not even close. None of us would have agreed to the secretary’s demands, and we applaud Dr. Monarez for standing up for the agency and the health of our communities.

We have a message for the rest of the nation as well: This is a time to rally to protect the health of every American. Congress must exercise its oversight authority over H.H.S. State and local governments must fill funding gaps where they can. Philanthropy and the private sector must step up their community investments. Medical groups must continue to stand up for science and truth. Physicians must continue to support their patients with sound guidance and empathy.

And each of us must do what public health does best, to look out for one another.

The men and women who have joined C.D.C. across generations have done so not for prestige or power, but because they believe deeply in the call to service. They deserve an H.H.S. secretary who stands up for health, supports science and has their back. So, too, does our country.

Trump, Labor, and Disability

 In The Politics of Autism, I discuss the employment of people on the autism spectrum.  It also discusses the workforce serving people with disabilities.

 From the Pacific ADA Network:

The U.S. Department of Labor is proposing to change its regulations for Section 503 of the Rehabilitation Act of 1973.

Section 503 regulations require that businesses with federal contractors use voluntary surveys to track their progress in hiring and employing people with disabilities. The regulations also include a goal for contractors — businesses with federal contracts should try to have a workforce that includes 7% people with disabilities. A new proposal from the Administration would delete these requirements.

To learn more and submit a comment, see the Federal Register notice: Modifications to the Regulations Implementing Section 503 of the Rehabilitation Act of 1973, as Amended. Comments must be received by September 2, 2025.

CAP:

The Trump administration has proposed a rule that would get rid of minimum wage protections for upward of 3.7 million domestic workers that work in peoples’ homes to provide care and assistance for children and to allow aging Americans and disabled people to live independently in their local communities.

Home care workers already struggle with low wages: In 2024, the median wage for a home health aide was only $34,900 per year. By exempting these employees from the federal minimum wage law, employers will be free to cut wages for millions of domestic workers to less than $7.25 per hour and avoid paying them time-and-a-half pay on hours worked beyond a 40-hour workweek.

More than a decade ago, the Obama administration closed a long-standing loophole in the Fair Labor Standards Act rules to ensure that more domestic workers had access to minimum wage and overtime protections. These workers were excluded from the federal minimum wage law passed in 1938 in order to win support from southern Democrats, who opposed extending the protections to an occupation that was a major source of employment for Black workers. Now, the Trump administration is opening that loophole again.

The Trump administration will take the next step in rolling back these protections just after Labor Day, when the period for public comments on the proposal closes. However, it has already ordered regional enforcement offices to ignore the existing standard and stop enforcing the federal minimum wage law for domestic workers who gained minimum wage rights under the 2013 rule. The administration claims that the 2013 rule—which has been factored into the cost of domestic services for more than a decade—might discourage use of home care services, but in reality, similar minimum wage policies have had little to no impact on employment.

 

Measles Cases and the Administration's Response

In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.  A top antivaxxer is HHS Secretary RFK Jr. He is part of the "Disinformation Dozen." He helped cause a deadly 2019 measles outbreak in Samoa.

From CDC:

As of August 26, 2025, a total of 1,408 confirmed* measles cases were reported by 43 jurisdictions: Alabama, Alaska, Arkansas, Arizona, California, Colorado, Florida, Georgia, Hawaii, Idaho, Illinois, Indiana, Iowa, Kansas, Kentucky, Louisiana, Maryland, Michigan, Minnesota, Missouri, Montana, Nebraska, New Jersey, New Mexico, New York City, New York State, North Carolina, North Dakota, Ohio, Oklahoma, Oregon, Pennsylvania, Rhode Island, South Carolina, South Dakota, Tennessee, Texas, Utah, Vermont, Virginia, Washington, Wisconsin, and Wyoming.

There have been 35 outbreaks** reported in 2025, and 86% of confirmed cases (1,214 of 1,408) are outbreak-associated. For comparison, 16 outbreaks were reported during 2024 and 69% of cases (198 of 285) were outbreak-associated.

Amy Maxmen at KFF:

As measles surged in Texas early this year, the Trump administration’s actions sowed fear and confusion among CDC scientists that kept them from performing the agency’s most critical function — emergency response — when it mattered most, an investigation from KFF Health News shows.

The outbreak soon became the worst the United States has endured in over three decades.

In the month after Donald Trump took office, his administration interfered with Centers for Disease Control and Prevention communications, stalled the agency’s reports, censored its data, and abruptly laid off staff. In the chaos, CDC experts felt restrained from talking openly with local public health workers, according to interviews with seven CDC officials with direct knowledge of events, as well as local health department emails obtained by KFF Health News through public records requests.

“CDC hasn’t reached out to us locally,” Katherine Wells, the public health director in Lubbock, Texas, wrote in a Feb. 5 email exchange with a colleague two weeks after children with measles were hospitalized in Lubbock. “My staff feels like we are out here all alone,” she added.

A child would die before CDC scientists contacted Wells.

...

Kennedy deflected criticism from those who call him anti-vaccine, saying that any parent in Texas who wants a measles vaccine can get one. He followed this with dangerously inaccurate statements. “There are adverse events from the vaccine. It does cause deaths every year,” he said. “It causes all the illnesses that measles itself causes, encephalitis and blindness, et cetera.” There is no evidence that measles vaccines “cause deaths every year.” Scores of studies show that the vaccine doesn’t cause encephalitis, that most potential side effects resolve quickly on their own, and serious adverse reactions are far rarer than measles complications.

In another interview, Kennedy said, “The MMR vaccine contains a lot of aborted fetus debris.” The measles, mumps, and rubella, or MMR, vaccine does not contain an iota of fetal cells.

 

 

The Attack on Autism Research

In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.  A top antivaxxer is HHS Secretary RFK Jr. He is part of the "Disinformation Dozen." He helped cause a deadly 2019 measles outbreak in Samoa.

He claims to be searching for the causes of autism but the administration is slashing autism research.

 Eric Garcia at The Independent:

"To see decades of high quality, excellent research, just being ignored is as concerning to say the least," said Molly Losh, a professor at the Northwestern University School of Communication. "And and the people who are the the individuals with the strongest voices are, seem to be the those who are the least informed of the science."

Massive cuts, largely initiated by the Elon Musk-led Department of Government Efficiency, saw the elimination of federal grants, including research focused on autism. Kennedy has sought to characterize the increase in cases of autism as signs of an epidemic, even though the Centers for Disease Control & Prevention, which also falls under his jurisdiction, has found that much of the increase in diagnoses stems from improved detection.

...

In May, the National Institutes of Health, which falls under the Department of Health and Human Services jurisdiction, announced that it would not issue awards to domestic or foreign entities “that include a subaward to a foreign entity.” For Losh, it was a death blow for a project that would have studied “social language abilities” as well as neural and behavioral markers in autism across English and Cantonese speakers.

Kennedy v. Public Health

In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.  A top antivaxxer is HHS Secretary RFK Jr. He is part of the "Disinformation Dozen." He helped cause a deadly 2019 measles outbreak in Samoa.

This week's CDC purge is just the lastest installment of RFK Jr's war on public health.

 Brandy Zadrozny at MSNBC:

Save for his confirmation hearing and private promises to Cassidy, Kennedy has clearly communicated his intentions to dismantle the CDC. Over decades of activism and lawyering, Kennedy has cast the CDC as the villain in his vaccine conspiracy theories, calling the agency a “cesspool of corruption,” filled with doctors and scientists who seek to profit off of injured children.

In just seven months, Kennedy has: pushed sweeping budget cuts and canceled billions in research and development; overseen mass layoffs and reorganizations that erased whole teams tackling clear health threats; without justification, withdrawn Covid vaccine recommendations for healthy children and pregnant people; gutted the agency’s vaccine advisory panel, firing respected experts and replacing them with ideological loyalists; installed a vocal Covid vaccine critic to chair a safety subcommittee; reopened the long-debunked vaccines-and-autism debate, promising a cause by September; hired a discredited anti-vaccine researcher who experimented on autistic children to trawl government data and relitigate settled science; pressed for access to private data to fuel his project; undermined his own epidemiologists during the Texas measles response; downplayed a shooting that left CDC staff shaken; announced sweeping policy changes on social media with no data to back them and accused the American Academy of Pediatrics of a “pay-to-play scheme” for daring to dissent. He’s done it all mostly from the road, on a national MAHA tour, where between performative push-ups and pull-ups, he’s cheered GOP states as they have restricted food benefits for low-income families.

CDC in Revolt

In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.  A top antivaxxer is HHS Secretary RFK Jr. He is part of the "Disinformation Dozen." He helped cause a deadly 2019 measles outbreak in Samoa.

Lena H. Sun, Lauren Weber and David Ovalle at  WP:

As the Centers for Disease Control and Prevention reeled from the ousting of its director, three senior leaders who resigned in protest told The Washington Post they were asked to participate in an unscientific vaccine recommendation process that they believe could harm the health of Americans.

The officials spoke shortly before security officials escorted them off the CDC’s Atlanta campus Thursday morning. Staff and leaders of the agency are openly revolting against the Trump administration and Health and Human Services Secretary Robert F. Kennedy Jr., a longtime critic of the CDC and anti-vaccine activist, after months of tension over vaccine policy and staffing cuts.

Demetre Daskalakis, who resigned as the agency’s top respiratory illness and immunization official, said the CDC had reached an “unfettered situation where undue influence and ideology would drive the science.”

... 

The White House on Wednesday announced the firing of CDC Director Susan Monarez, a longtime federal government scientist nominated by President Donald Trump and confirmed by the Senate in July. Her attorneys have challenged the legality of her firing and said she would not resign after she refused to follow “unscientific, reckless directives.” Kennedy and other officials pressured Monarez to change vaccine policy and fire senior staff, people familiar with the conversations previously told The Post.

...

The move to oust Monarez prompted three career officials at the agency to coordinate and announce their resignations Wednesday: Daskalakis, Deb Houry, the chief medical officer, and Dan Jernigan, who helped oversee the CDC’s infectious-disease response.

...

As the founder of an anti-vaccine group, Kennedy has a history of falsely linking vaccines to autism and other unscientific claims. Kennedy has criticized the CDC often, calling it a “cesspool of corruption” and arguing it’s in the pocket of the pharmaceutical industry.

...

Jernigan said the last straw for him was being forced to work with David Geier, a proponent of the false claim that vaccines cause autism who was hired by HHS to review old vaccine safety data and study a possible link between the two. In recent weeks, an HHS official asked for Geier be given access to additional up-to-date vaccine safety data, which Jernigan said raised patient privacy and ethical concerns.

 

CDC employees walk out to rally in support of ousted leadershttps://t.co/blJCzpEKah

— MSNBC (@MSNBC) August 28, 2025

Trump-Kennedy Horror Show

In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.  A top antivaxxer is HHS Secretary RFK Jr. He is part of the "Disinformation Dozen." He helped cause a deadly 2019 measles outbreak in Samoa.

Even though HHS is cutting autism research, he claims he will identify the causes of autism next month.

Remarks: Donald Trump Leads a Cabinet Meeting at the White House - August 26, 2025

TRUMP: I don't want to go too long because we have a lot of people. But the autism is such a tremendous horror show, what's happening in our country and some other countries, but mostly our country. How are you doing on that?

KENNEDY: We are doing very well. We will have announcements, as promised, in September. We're finding interventions, certain interventions now that are clearly, almost certainly causing autism and we're going to be able to address those in September.

TRUMP: It's such a big day. I'm looking forward to that day because there's something wrong when you see the kind of numbers that you have today versus 20 years ago. And those numbers, what are those numbers, Bobby?

KENNEDY: Well, in 1970, the biggest epidemiological study in history was done in Wisconsin. They looked at 900,000 children and they were looking for autism. They knew what it looked like and they were very, very precise about it. And they found an incident rate of 0.7. In other words, less than one per every 10,000 children.

Today, our most recent numbers are one in every 31 kids. It's probably actually much worse than that because California, which has the best collection system, is reporting 1 out of every 19 children, American children, has autism, one in every 12.5 boys. So it's gone from less than 1 in 10,000 in 1970 to 1 in 12.5 boys.

TRUMP: Look at those numbers, so there has to be something artificially causing this, meaning a drug or something. And I know you're looking very strongly at different things and I hope you can come out with that as soon as possible.

KENNEDY: we will.

TRUMP: So 1 in 10,000 and now it's 1 in 31 or 34, or 12, if it's a boy. Can you imagine that, 1 in 12? That's for a boy.

KENNEDY: One every 12.5 boys.

TRUMP: It's not even believable that that could be, and that was 1 in 10,000, not so long ago. I've been hearing these numbers and they get worse and worse every year. There's got to be something -- I think there's nothing including favored nations and everything else, there's nothing that can be -- if you can find out the reason that that's happening, and I know we're going to do some things.

TRUMP: I think it's --

KENNEDY: We're going to have some answers for you.

TRUMP: I think we -- I think we maybe know the reason and I look forward to that press conference, to be with you in that press conference. That's going to be a great thing. Thank you, Bobby. You're doing a great job.

Cutting Autism Research

In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.  A top antivaxxer is HHS Secretary RFK Jr. He is part of the "Disinformation Dozen." He helped cause a deadly 2019 measles outbreak in Samoa.

Helen Pearson at Nature:

On 16 April, Robert F. Kennedy Jr held a press conference about rising diagnoses of autism. The US Health and Human Services (HHS) secretary pointed to new data showing that autism prevalence in the United States had risen steeply from one in 150 eight-year-olds in 2000 to one in 31 in 2022. He called it an “epidemic” caused by “an environmental toxin” — and said he would soon be announcing a study to find the responsible agent.

The next month, the US National Institutes of Health (NIH), part of the department that Kennedy leads, announced the Autism Data Science Initiative (ADSI). The initiative offered up to US$50 million to fund studies on the causes of autism. The winning applications are expected to be announced in September.

Usually, big investments in research are welcomed by scientists — but not this time. Many were dismayed that these developments seemed to ignore decades of work on the well-documented rise in autism diagnoses and on causes of the developmental condition. Although Kennedy said that environmental factors are the main cause of autism, research has shown that genetics plays a bigger part. Population studies1 have linked a handful of environmental factors — mostly encountered during pregnancy — to increased chances of autism, but their precise role has been hard to pin down. More than anything, research has shown that the drivers of autism are fiendishly complicated. “There will never be a sound-bite answer to what causes autism,” says Helen Tager-Flusberg, a psychologist who studies neurodevelopmental conditions at Boston University, Massachusetts.

...

And researchers and autism groups are concerned that funding cuts and policies introduced by the Trump administration will ultimately set back autism research and support much more than the ADSI could further it. A Nature analysis of NIH-funded research projects using the RePORTER tool shows that autism research received $62 million less funding in the first half of 2025 than in the same period in 2024 ($212 million compared with $274 million).

Investment in the ADSI “cannot offset the broader erosion of support” caused by cuts to research grants and to Medicaid (the US public-health insurance system for people with low incomes), education funding and other services, a spokesperson at the Autism Society of America in Rockville, Maryland, said in a statement to Nature. “These cuts threaten the infrastructure that supports both scientific progress and quality of life for Autistic individuals and their families.”

MAHA Rhetoric

In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.  A top antivaxxer is HHS Secretary RFK Jr. He is part of the "Disinformation Dozen." He helped cause a deadly 2019 measles outbreak in Samoa.

RFK Jr. has suggested that autism is preventable through MAHA guidelines. Megan Donelson at The Conversation:

Wile the government is clearly not responsible for the genetic causes of chronic diseases, this narrow focus on lifestyle and environmental factors implies that autism can be prevented if these factors are altered or eliminated.

While this may sound like great news, there are a couple of problems. First, it’s simply not true. Second, the Trump administration and Kennedy have canceled tens of millions of dollars in research funding for autism – including on environmental causes – replacing it with an initiative with an unclear review process. This is an unusual move if the goal is to identify and mitigate environmental risk factors And finally, the government could use this claim to justify removing federally funded support systems that are essential for the well-being of autistic people and their families – and instead focus all its efforts on eliminating processed foods, toxins and vaccines.

...

 Even if organic foods and a toxin-free household were the answer to reducing the prevalence of autism, the leaked MAHA Commission strategy report steers clear of recommending government regulation in industries such as food and agriculture, which would be needed to make these options affordable and widely available.

Instead, MAHA’s supposed interventions would remain lifestyle choices – and expensive ones, at that – left for individual families to make for themselves.

Tariffs Hurt People with Disabilities

In The Politics of Autism, I write about the everyday struggles facing autistic people and their families.  Technology can help -- but not if it is unaffordable.

Chase DiBenedetto at Mashable:

Adaptive products — often "one of a kind" tech — are considered niche, despite their necessity for swaths of people globally. At large, assistive technologies can be in a regulatory limbo for years before they get into the hands of medical professionals and then in the hands of consumers, and insurance companies have more say than many would like. That makes succeeding in this industry more complicated and higher-risk than other tech sectors, explains Sarah Thomas, founder and CEO of accessibility consulting firm Delight x Design and an advisor in age tech — the new term for human-centered technologies designed to serve and adapt an aging population.

Compared to new laptops and gaming consoles, accessibility tools are "a need to have, not a nice to have," said Thomas. Even in a world without additional economic constraints, accessibility tools and assistive technologies are already shockingly high-priced. Power wheelchairs, for example, can range from a few thousand to tens of thousands of dollars. Hearing aids run between $1,000 and $4,000, on average. New technologies are even steeper, and financial assistance or insurance reimbursement is never assured.

..

Medtech founders like [Neil] Weinstock and [Tim} Balz start their businesses already battling pricing and access. Many are now encumbered by staggering import fees, as well. Thomas spoke of a startup specializing in dementia support products that's currently paying out a $30,000 tariff bill just to order more inventory — without having made any sales. Other tech companies in Weinstock's circle have faced million-dollar tariff bills as their stock is held at the country's shipping ports, despite desperately attempting to shift manufacturing domestically. Similarly, a manufacturing colleague of Balz had to lay off staff to afford seven-figure costs related to shipping containers.

In ncurring even more additional costs from tariffs means these companies must choose between "eating" the differences or alienating even more consumers with higher unit prices. That can sink a startup quickly.

"We have no idea just how much our costs are going to be because of the tariffs," said Weinstock. Soliddd's product is partially manufactured in the United States, but they also use Qualcomm chips from third party manufacturers, and proprietary pieces that are imported from other countries, like Japan. "I've had a long career doing hardware, and I see that hardware has just gone away in the United States," he said.

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).

 

Racial Disparity Data

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

Kara Arundel at K-12 Dive:

The U.S. Department of Education is proposing to remove a requirement for states to collect and report on racial disparities in special education, according to a notice being published in the Federal Register on Friday.

The data collection is part of the annual state application under Part B of the Individuals with Disabilities Act. The application provides assurances that the state and its districts will comply with IDEA rules as a condition for receiving federal IDEA funding.

The data collection for racial overrepresentation or underrepresentation in special education — known as significant disproportionality — helps identify states and districts that have racial disparities among student special education identifications, placements and discipline. About 5% of school districts nationwide were identified with significant disproportionality in the 2020-21 school year, according to federal data.

...

Robyn Linscott, director of education and family policy at The Arc, an organization that advocates for people with intellectual and developmental disabilities, said that even if in the future there is no longer a data collection for significant disproportionality at the federal level, the information would still need to be collected by states and districts as required by IDEA.

But the loss of the central repository of information on significant disproportionality in schools will make it more difficult for advocacy groups and technical assistance centers to support school and district efforts to reduce racial disparities in special education.

In the absence of the data being available at the federal level, it will be “much more difficult” for people not within a state education agency to be able to access the data, Linscott said.