Prevalence and Severity Levels

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

Russell, L.A., Tinker, S.C., Shaw, K.A. et al. Prevalence of Autism Spectrum Disorder Severity Levels From the Fifth Edition of the Diagnostic and Statistical Manual (DSM-5) in the Autism and Developmental Disabilities Monitoring Network. J Autism Dev Disord (2026). https://doi.org/10.1007/s10803-026-07292-6    

Abstract

Purpose

The fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) introduced severity level specifiers for autism spectrum disorder (ASD) with minimal description of the criteria for categorizing three levels of severity (1 to 3, with 3 being the most “severe”). The objective of the analysis was to assess the prevalence of ASD severity levels using population-based surveillance data.

Methods

We analyzed severity level data on children with ASD ages 4- and 8-years-old in 2018 and 2020 in the multisite Autism and Developmental Disabilities Monitoring (ADDM) Network. Prevalence of any documented severity level and of each individual level were calculated overall and by demographic characteristics. Prevalence ratios adjusted for sex, race/ethnicity, age, intellectual disability, ADDM surveillance year, and site (aPRs) and 95% confidence intervals (CIs) were used for comparisons.
Results

Less than half (40.4%) of children with documented ASD diagnoses had any severity level specified in their records, with wide variation by site (4.8%-73.2%). Severity levels were more common in records of children aged 4, in surveillance year 2020, and more often missing in non-Hispanic Black children and from records also missing information on intellectual disability (ID). Higher prevalence of more severe (level 3) ASD was observed among non-Hispanic Black children, children aged 4 years, children in 2020, and children with ID.

Conclusion

Utilization of the DSM-5’s severity levels by community professionals varied widely, limiting their potential utility in identifying needed services and supports for children with ASD.

From the article:

Wide variation in use and assignment of severity levels across sites suggest a lack of standard of practice for determining a child’s level of severity. This may be due to differences in diagnostic training, clinical protocols, or documentation practices. The DSM-5 specifies that “the descriptive severity categories should not be used to determine eligibility for provision of services. Indeed, individuals with relatively better skills overall may experience different or even greater psychosocial challenges. Thus, service needs can only be developed at an individual level and through discussion of personal priorities and targets” (APA, 2013). Providers may therefore question the utility of severity levels defined by support needs, when the DSM also advises that service needs be determined on an individual basis. There is at least one documented instance of severity levels being used to determine eligibility for services: Australia requires at least a level 2 designation to receive their National Disability Insurance Scheme (NDIS) (National Disability Insurance Agency, 2022). It is unknown whether and how often severity levels are used by U.S. service systems.

The degree to which autistic people find utility in the severity levels is unclear. Some who had been diagnosed under the DSM-IV with Asperger’s disorder found the Asperger’s descriptor helpful in understanding themselves and in describing their needs, and they reported concern when it was removed from the DSM-5 (Kapp & Ne’eman, 2020). The severity levels introduced in the DSM-5 could provide a similar type of descriptor that some autistic people find useful. However, other autistic people have expressed concern about the use of severity levels because they might be used to limit care access or to inappropriately group people with very different types of support needs (Kapp & Ne’eman, 2020). Similar concerns have been expressed in other attempts at grouping functioning in ASD, notably with the introduction of the term “profound” ASD, coined by the Lancet Commission on the Future and Care and Clinical Research in Autism (Kapp, 2023; Kripke-Ludwig, 2023; Lord et al., 2022; Pukki et al., 2022).

 

Blue Envelopes in Washington State

 In The Politics of Autism, I discuss interactions between first responders and autistic people.  Some jurisdictions allow autistic drivers to ask for a blue envelope to disclose the driver's diagnosis in case of an accident or traffic stop.  Others have ID cards.

A release from Washington State Rep. Carolyn Eslick:

Legislation aimed at preventing misunderstandings during traffic stops and improving safety for drivers with autism and other neurodivergent conditions has been signed into law by Gov. Bob Ferguson.

House Bill 2323, sponsored by Rep. Carolyn Eslick, directs the Washington State Department of Licensing to establish a statewide Blue Envelope Program. The envelope will hold essential documents, including vehicle registration and proof of insurance, and include printed guidance for drivers and responding officers on how to communicate during a traffic stop.

The concept was first adopted statewide in Connecticut in 2020 and has since been implemented through a mix of state laws and local law enforcement programs across the country.

Research shows interactions with law enforcement are not uncommon for people on the autism spectrum, with a significant share of young adults reporting being stopped and questioned by police. In high-stress situations, some individuals may have difficulty responding quickly or may exhibit behaviors that can be misinterpreted. Sensory triggers such as flashing lights, sirens and rapid commands can heighten stress and complicate communication.

“This is about protecting people in a moment when a simple misunderstanding can have serious consequences,” said Eslick, R-Sultan. “For someone who processes the world differently, a traffic stop can be overwhelming and frightening. Through this bill, we are providing a clear way for drivers to communicate their needs and help officers respond with awareness, patience and understanding so everyone gets home safely.”

Under the law, blue envelopes will be available at no cost at driver licensing offices statewide and by request. Participation is voluntary, and no medical documentation is required. The Department of Licensing will also provide information about the program online.

House Bill 2323 passed the House on a 92-1 vote and the Senate 47-0 before being signed into law. It takes effect June 11.

Neurodivergent: "A single entity is not diverse."

In The Politics of Autism, I discuss the neurodiversity movement.   

 Sara Luterman at The 19th:

Neurodivergent” is an umbrella term that describes people whose minds differ from what society considers normal. It can encompass a number of conditions and is most commonly associated with autism and ADHD today.

What was once an extremely niche term in neurodiversity and disability activist circles is now in the purview of pop stars, business leaders and politicians.

Kassiane Asasumasu, an early neurodiversity advocate, is widely credited with coining the term in the late ’90s. The word was the result of “a pedantic, neurodivergent kid (me) having access to the Internet,” she told The 19th. Specifically, she was annoyed that people were using “neurodiverse” as a descriptor for individual people or individual diagnoses.

“A single entity is not diverse,” Asasumasu told The 19th.

...

There were other competing terms, some of which predated “neurodivergent,” according to Ira Eidle. Eidle is a student archivist who maintains The Autistic Archive, one of the only repositories of documents from the early neurodiversity movement. Eidle put The Autistic Archive together prior to entering academia and is in the process of using the knowledge he has gained to update and improve the website. The earliest usage he could find for the word “neurodivergent” was from 2002.

Teaching Self-Advocacy

In The Politics of Autism, I write about social services, special education, and the Individuals with Disabilities Education Act (IDEA). 

Nadwodny, N., VanHook, B., Esham, B., Larsen, L. N., Levinson, S., & Eisenhower, A. (2026). Good intentions are not enough: Autistic perspectives on structural ableism within the walls of our classrooms. Autism, 0(0).
OnlineFirst https://doi.org/10.1177/13623613261426691

This study aimed to examine how structural ableism affects autistic learners by collecting first-person perspectives of current and former autistic students about how their school experiences shaped their ability to self-advocate. In addition, the study aimed to further highlight autistic perspectives by incorporating a community-participatory research design, which consisted of a primarily autistic research team. Participants consisted of 19 autistic adolescents and adults who represented a wide array of intersectional sociodemographic identities. Participants were engaged in a 90-min semi-structured interview to discuss their school experiences. Interviews were analyzed qualitatively and inductively through a critical constructivist approach to grounded theory. Data analysis highlighted many structural barriers to autistic self-advocacy for our participants. These barriers were described within six distinct domains which emerged as themes in our analysis: erasure, conformity, isolation, oppression, hidden expectations, and authority. This qualitative, community-participatory research study exposes the degree to which systems-level ableism exists within US K–12 systems. Specifically, our participants emphasized ableism that went beyond the individual or interpersonal level. We conclude with a series of recommendations on how to combat these manifestations of ableism in schools.

From the article:

As a whole, our participants described feeling dissatisfied with their K–12 school experiences and having trouble self-advocating at school. Our findings, in which participants expressed that their needs were largely unmet, replicated similar studies that identified significant dissatisfaction among autistic individuals with their school experiences (Brede et al., 2017; Parsons, 2014; Williams et al., 2019). In addition, the fact that our participants experienced difficulty self-advocating aligns with other findings that autistic students are less likely to self-advocate than nonautistic students at school (Santhanam & Wilson, 2023)

.

I-ACC Meets

 In The Politics of Autism, I discuss the Interagency Autism Coordinating Committee and research priorities.

RFK Jr. has stacked it with his own type of people.

Allison Parshall at Scientific American:

A “shadow committee” of autism researchers and science advocates met in the nation’s capital for the first time on Thursday.

Called the Independent Autism Coordinating Committee (I-ACC), the group rapidly came together as a response to Secretary of Health and Human Services Robert F. Kennedy, Jr., overhauling of the federal government’s Interagency Autism Coordinating Committee (IACC), which provides guidance on autism research. Kennedy’s 21 new appointees to the committee include several who have promoted a disproved connection between vaccines and autism and who have promoted non-evidence-based and potentially dangerous therapies for the condition.

...

The federal autism committee now has a “striking absence of scientific expertise,” said Craig Snyder, policy lead at the Autism Science Foundation, during the rival group’s meeting on Thursday. “It disproportionately represents the small subset of families who believe, contrary to scientific consensus, that vaccines cause autism while excluding the overwhelming majority of autistic individuals, families and advocates who support evidence-based science.”

The independent group plans to review autism science and recommend research priorities to improve the lives of autistic people—something that many of its members worry the federal committee will no longer prioritize.

 ...

.In 2019 the federal committee began to include a larger number of autistic people as members. Now the federal group has less representation from autistic people than before, and the independent group has only one autistic member. Neither group includes representatives of autism self-advocacy organizations.

“At present autistic people are losing ground on political representation,” says Ari Ne’eman, co-founder of the Autistic Self Advocacy Network and a health policy researcher at Harvard University. “I don’t think either [group] can be meaningfully said to represent our community at this moment.”

1,487 Measles Cases

 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.

In March, the US has already had more measles cases than in all of 2024.

From CDC:

As of March 19, 2026, 1,487 confirmed* measles cases were reported in the United States in 2026. Among these, 1,478 measles cases were reported by 32 jurisdictions: Alaska, Arizona, California, Colorado, Florida, Georgia, Idaho, Illinois, Kentucky, Maine, Massachusetts, Michigan, Minnesota, Missouri, Nebraska, New Mexico, New York City, New York State, North Carolina, North Dakota, Ohio, Oklahoma, Oregon, Pennsylvania, South Carolina, South Dakota, Texas, Utah, Vermont, Virginia, Washington, and Wisconsin. A total of 9 measles cases were reported among international visitors to the United States.

There have been 14 new outbreaks** reported in 2026, and 94% of confirmed cases (1,398 of 1,487) are outbreak-associated (323 from outbreaks starting in 2026 and 1,075 from outbreaks that started in 2025).

ABA Funding Turmoil

The Politics of Autism includes an extensive discussion of insurance and Medicaid services for adults with intellectual and developmental disabilities. Cases of fraud and overbilling have led to a backlash.

Maya Goldman at Axios:

Where it stands: States and Medicaid managed care plans are scrutinizing more autism program spending and imposing cost controls.

• Nebraska cut Medicaid payments for applied behavioral analysis by up to 80% last year. Indiana policymakers have proposed payment caps and reduced rates. New York is considering legislation that would make similar changes.
• Medicaid managed care insurers like UnitedHealth Group have also limited coverage for applied behavioral analysis in some states.

Yes, but: The changes are causing significant upheaval for families that have been using applied behavioral analysis.

• One mother in Arizona told Axios Phoenix that her 3-year-old son spent eight months on a waitlist for services before he got into a program last year.
• Their insurance plan has since removed the provider from its network. The mother said she'll probably have to quit her job when her son loses coverage for his 40-hour-a-week therapy in May.
• North Carolina reversed some cuts to Medicaid payment for applied behavioral analysis services last year after families of kids with autism sued the state.

Autism and Political Careers

In The Politics of Autism, I write:  "Support from the general public will be an important political asset for autistic people. Another will be their sheer numbers, since a larger population of identified autistic adults will mean more autistic voters and activists."  Previous posts have discussed autistic officeholders and political candidates in California,  New York, Georgia, Texas, and Wisconsin.

Friedman, Sally, Kennedy Cox, and Richard K. Scotch. 2026. "Autism and Political Careers: Navigating Political Leadership" Societies 16, no. 2: 67.   https://doi.org/10.3390/soc16020067.  Abstract:

Individuals on the autism spectrum have been stigmatized as not being expected to engage in certain activities, such as interpersonal interaction and communication, which are related to the capacity to exercise leadership and may have implications for their capacity to effectively function in political roles. In this paper, we profile four politicians (who happen to be state legislators) with autism who have beaten the odds with electoral success. We examine their routes to office, their range of activities, including how they represent autism, and the intersectionalities (in addition to autism) that impact their lives.

From the article:

More specifically, we profile four state legislators who self-identify as on the autism spectrum. Jessica Benham and Abigail Salisbury (both Democrats) currently represent the 36th and 34th districts, respectively, in Pennsylvania. Benham was first elected in 2020, and Salisbury in a special election in 2022. Briscoe Cain (R), in office since 2017, represents the 128th district in Texas and is running for Congress in one of the areas involved in the current mid-stream redistricting controversies. Yuh-Line Niou (D) represented the 65th district in New York between 2017 and 2022, when she engaged in what turned out to be an unsuccessful run for Congress. While these are the only elected officials our searches turned up as identified as autistic, as Cain’s story below shows, autism, under some circumstances, can be an invisible disability if or until an individual chooses to “come out.” Given the stigma, the choice not to divulge may make sense for many. Despite the notable stereotypes attached to people on the autism spectrum and acknowledging that the people studied here are “highly functioning,” these four legislators have, nonetheless, by virtue of their political careers, taken on leadership roles. As such, they are involved in the many and varied activities generally engaged in by state legislators. We focus below on their backgrounds/roots to political office, their “autism journey,” their activities as state representatives, and the several intersectionalities that are part of their lives.

 

Lawyers and Autistic Defendants

In The Politics of Autism, I discuss interactions between the justice system and autistic people.

Caliman, C. R., and C. M. Berryessa. 2025. “ Legal Defense of Autistic Defendants in the United States: A Qualitative Analysis of the Experiences of Legal Professionals.” Journal of Social Issues 81, no. 4: e70034. https://doi.org/10.1111/josi.70034. Abstract:

Autistic individuals encounter distinct barriers within the criminal-legal system, such as misinterpretations of their behaviors, a lack of accommodations, and systemic biases. Despite growing understanding of these challenges, research on how defense attorneys understand and advocate for autistic clients remains limited. This study explores how defense attorneys in the United States conceptualize autism and apply neurodiversity-informed strategies in their advocacy. Semi-structured interviews with 31 defense attorneys revealed that while most attorneys view autism through a medicalized lens, they acknowledge the need for better strategies to secure accommodations in court. Findings suggest that attorneys often rely on expert testimony and recognize the courtroom as primarily designed for neurotypical individuals. Gaps in training and understanding about neurodiversity may hinder effective defense strategies and limit access to justice for autistic defendants. This research highlights the urgent need for enhanced legal training and systemic reform to improve representation and legal experiences for autistic individuals.

From the article:

When applied to the representation of autistic clients, the assumptions underlying the adversarial model, such as a shared understanding of rational legal strategy, communication norms, and courtroom participation, can pose significant challenges. From a procedural perspective, defense attorneys must provide effective counsel by constructing the best possible defense strategy, negotiating plea deals when appropriate, and ensuring their clients are competent to stand trial. This requires legal expertise and an understanding of their clients’ ability to participate in legal proceedings (Smith 2013). Autistic individuals may experience sensory overload, difficulty with language, and distinct social communication styles that affect how they receive and process legal information (Faccini and Burke 2021; Taylor et al. 2009). For example, a client may nod in agreement while masking confusion or distress, leading attorneys to overestimate comprehension and proceed with legal strategies the client does not fully understand (Cooper et al. 2020).

In response to these limitations, alternative frameworks such as therapeutic jurisprudence have emerged to expand how legal professionals conceptualize their roles. Rather than focusing solely on legal outcomes and adversarial performance, therapeutic jurisprudence encourages attorneys to consider how legal processes and strategies affect their clients' emotional, psychological, and cognitive well-being (Wexler 2004; Winick 1999). For defense attorneys working with neurodivergent individuals, this might mean advocating for courtroom accommodations, using adapted communication techniques, or helping secure external supports that foster more accessible legal participation (Berryessa and Caliman 2026). However, the extent to which attorneys should actively intervene in shaping their clients’ legal experience remains a debated ethical issue.

 

Vaccines and the Midterm

 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.

In mid-March, the US has already had more measles cases than in all of 2024.

Amanda Seitz and Stephanie Armour at KFF:

Trump’s top pollster, Tony Fabrizio, cautioned in December that an embrace of Kennedy’s anti-vaccine policies could cost politicians their jobs this year.

Eight in 10 MAHA voters and 86% of all voters believe vaccines save lives, his poll of 1,000 voters in 35 competitive districts found.

“In the districts that will decide the control of the House of Representatives next year, Republican and Democratic candidates who support eliminating long standing vaccine requirements will pay a price in the election,” a memo on the poll stated.

The White House has since shaken up senior staffing at HHS, including removing Jim O’Neill from the deputy secretary role and his job as acting director of the Centers for Disease Control and Prevention, in which he curtailed the agency’s childhood vaccination recommendations. Ralph Abraham, a vaccine skeptic who as Louisiana’s surgeon general suspended its vaccination promotion program last year, stepped down as the CDC’s principal deputy director in late February.

Jay Bhattacharya, a doctor who said in congressional testimony that he doesn’t believe vaccines cause autism, is now running the CDC in addition to directing the National Institutes of Health.

Though Trump himself has frequently espoused doubts and mistruths about vaccines, polling around anti-vaccine policy has undoubtedly shaken the White House’s confidence during a tough midterm election year, said former U.S. Rep. Larry Bucshon, an Indiana Republican and retired doctor who left Congress last year.

Bucshon said Republicans can’t risk alienating voters, especially parents of young children who might be moved by Democratic attack ads on the topic at a time when hundreds of measles cases are popping up across the U.S.

“That’s the reason you’re seeing the White House get nervous about it,” Bucshon said. “This is just the political reality of it.”

1,362 Measles Cases

 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.

Jim Wappes at CIDRAP

The US measles total grew by 81 cases this week, to 1,362 confirmed infections, the Centers for Disease Control and Prevention (CDC) said today in its weekly update.

In addition, yesterday local and federal officials detailed New Mexico’s response to its 99-case measles outbreak last year, including a 55% increase in uptake of the measles, mumps, and rubella (MMR) vaccine, according to a paper in Morbidity and Mortality Weekly Report (MMWR).

The CDC confirmed 2,284 measles cases for all of last year, which was a 35-year high. The country could well exceed that total before summer. The United States will likely lose its measles elimination status—which it gained in 2000—in November, when officials assess all the new data.

The CDC said all but nine of the 2026 cases are from 30 states and New York City, with the rest travel-related. With two new outbreaks confirmed this week, the nation now has 14 outbreaks this year. Of all confirmed cases, 94% are associated with an outbreak.

Leucovorin Walkback

 A number of posts discussed Trump's support for discredited notions about autism A September news conference was a firehose of lies.

Ariana Eunjung Cha and Rachel Roubein at WP:

Nearly six months ago, federal health officials gathered at the White House with President Donald Trump and vowed to “go bold” on autism. They sketched out plans for what they described as an “exciting treatment” for children with the condition — a decades-old drug, leucovorin, newly recast as a potential breakthrough.

“Hundreds of thousands of kids, in my opinion, will benefit,” Food and Drug Administration Commissioner Marty Makary said at the time.


But the administration is scaling back that vision. FDA announced Tuesday that it will expand approval for leucovorin, but only for a separate condition that some people with autism also have — not for autism itself.

...
“When we first started considering the ability to expand an indication for leucovorin, we did consider broadly whether there was data to support its use in a broader autism spectrum disorder population,” said a senior agency official.


But a systematic review of the literature led the agency to focus elsewhere. The “strongest data,” officials said, were concentrated among patients with the genetic form of cerebral folate deficiency, a condition they estimate affects “less than one in a million” people.
...


The initial press conference in September where Trump and his aides touted the prospect of expanding the drug’s use triggered immediate pushback. The president separately blamed Tylenol for causing autism — a claim without a proven link — and many in the medical establishment questioned the idea of prescribing leucovorin for a much broader population. Professional societies and individual physicians alike warned that the evidence base was thin.

A decades-old drug typically used alongside chemotherapy, leucovorin has been tested for autism-related symptoms in only a handful of small clinical trials in the United States and abroad. Some studies suggested modest gains in speech and behavior. But the data fell far short of the rigorous, large-scale evidence the FDA generally requires before granting approval for a new use.

The largest of the leucovorin-autism studies was retracted by the European Journal of Pediatrics on Jan. 29; after the authors acknowledged some errors, the editors wrote that the publication “no longer has confidence in the validity of the results and conclusions reported in this article.”

Autism Business

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.   Scams plague the world of autism. Some involve shady or abusive providers.

Christopher Weaver, Tom McGinty, and Anna Wilde Mathews at The Wall Street Journal:

The business of providing therapy to children with autism has surged in recent years across the U.S., fueled by taxpayer-funded Medicaid payments. Some companies have found lucrative opportunities to capitalize on the growing need for such care, sometimes outpacing regulators’ oversight, the Journal’s analysis found.

The number of companies offering such therapy—individualized treatments meant to help patients manage behavior and develop daily living and social skills—almost doubled between 2019 and 2023. Direct payments from state Medicaid programs to autism therapy providers grew to $2.2 billion in 2023, from $660 million just four years earlier, according to the data. Private insurers administering Medicaid benefits paid hundreds of millions more.

That made applied behavior analysis, or ABA, as the therapy is called, the fastest-growing service in Medicaid, the state-run program for low-income and disabled people. Federal taxpayers financed about 70% of Medicaid spending during that period. Entrepreneurs and investors, including some private-equity firms, have piled into the business.

 ...

Indiana became the nation’s hotbed of the booming autism therapy industry, home to nine of the top 10 providers by per-patient spending in 2023. A big part of that was because the state started reimbursing providers 40% of whatever they billed. Unlike the fixed prices that most states use to cap costs, Indiana’s approach became a kind of blank check and therapy providers flooded in to take advantage of the generous reimbursements.

Medicaid spending on autism surged—from $21 million in 2017 to $611 million in 2023, according to a state report.

“Over time you saw an explosion of the children who were diagnosed and in billing practices that in my opinion were the epitome of abuse,” said Mitch Roob, the current secretary of the state’s Family and Social Services Administration and interim Medicaid director.

No one monitored providers’ billing practices during those years, said Roob, who was appointed last year. “If you’re a kid and no one was looking at the cookie jar and the lid was off, would you take another one?”

...

The state scrapped the old billing system in 2024, replacing it with a flat rate of $68 an hour for services paid for by the state. Officials are planning an additional 6% cut this year and also plan to cap lifetime hours of service at 4,000 per child.