Prevalence and Underdiagnosis in NY-NJ Metro

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

Walter Zahorodny and colleagues have an article at the Journal of Autism and Developmental Disorders: "Prevalence and Characteristics of Adolescents with Autism Spectrum Disorder in the New York-New Jersey Metropolitan AreaBrief Reportith Autism Spectrum Disorder in the New York-New Jersey Metropolitan Area."

Abstract

Purpose

Almost all epidemiologic studies estimating autism spectrum disorder (ASD) prevalence have focused on school-age children. This study provides the first population-based data on the prevalence and expression of ASD among adolescents in a large US metropolitan region.

Methods

Active multiple source ASD surveillance of adolescents aged 16-years was conducted according to the Autism and Developmental Disabilities Monitoring (ADDM) Network method in a four-county New Jersey metropolitan region. Prevalence estimates are provided, characteristics are described and comparison of the distribution and characteristics of ASD is offered for this cohort, at 8 and 16-years.

Results

ASD prevalence was 17.7 per 1000 (95% CI: 16.3–19.2)]. One-in-55 males and one in 172 females were identified with ASD. High-SES was positively associated with ASD and White adolescents had higher ASD prevalence (22.2 per 1000) than Hispanic adolescents (13.1 per 1000). One in four study-confirmed individuals with ASD did not have an ASD diagnosis. A majority of ASD adolescents (58.8%) had a co-occurring neuropsychiatric disorder. White and High-SES individuals had greater likelihood of co-occurring disorder. The demographic distribution and functional profile of ASD was similar in this cohort at 8 and 16-years.

Conclusion

Approximately one-in-55 adolescents in our area had ASD, in 2014, and one-in-4 16-year-olds with ASD was not diagnosed. A majority (3-in-5) of the adolescents with ASD had a co-occurring neuropsychiatric disorder. ASD under-identification and the high frequency of co-disorders in adolescents with ASD pose significant challenges to care and support.

Another Insurrectionist Tries the Autism Defense

In The Politics of Autism, I write:

There is no evidence linking autism to planned violence, but in recent years, mass shootings by young men have led commentators in the mainstream media and on the Internet to suggest such a connection. After the 2007 Virginia Tech massacre, for instance, news reports said that the shooter was on the spectrum. The speculation made little sense to anyone who understood autism. Whereas autistic people have language delays and deficits, the killer had learned English as a second language — and learned it well enough to major in the subject in college. Later on, it turned out that he had an entirely different problem, a social anxiety disorder. Adam Lanza, who committed the Sandy Hook massacre in 2012, may have had an Asperger’s diagnosis, but his father emphasized that his behavior stemmed from the psychiatric illnesses that he also had. Nevertheless, the media speculated about Lanza’s place on the spectrum, which worried autism parents. One mother of an autistic child wrote: “This is the first time I'm truly afraid for him. Afraid of what may happen to my son with autism at the hands of a stranger; a stranger who has chosen to buy into the media-fueled misinformation that individuals diagnosed with an Autism Spectrum Disorder are dangerous and capable of horrendous acts of terror and violence.”

Daniel Barnes and Ryan J. Reilly at NBC News:

 A Jan. 6 defendant, in opening arguments at his trial before a jury Wednesday, compared himself to Supreme Court Justice Brett Kavanaugh and said he liked that members of Congress were fearing for their lives during the Capitol attack.Brandon Fellows at the U.S. Capitol in 2021.U.S. District Court for the District of Columbia

Brandon Fellows was initially arrested 10 days after the Capitol riot in January 2021. He first faced misdemeanor charges but was later indicted on a felony charge of obstruction of an official proceeding and aiding and abetting.

Fellows had been held in pretrial custody since mid-2021. He was detained because, while he was on pretrial release in his Jan. 6 case, he called his probation officer’s mother and reportedly harassed a former girlfriend, in violation of a state protection order. In recent court filings, he called U.S. District Judge Trevor McFadden corrupt and biased.

Jury selection took place Tuesday, and opening arguments began Wednesday, with Fellows representing himself before jurors.

Fellows told jurors that he believes Jan. 6 "was a beautiful day." He said he’s on the autism spectrum and had been diagnosed with Asperger’s syndrome, as well as attention-deficit/hyperactivity disorder.

Fellows referred Elon Musk, calling the owner of the social media platform X, previously known as Twitter, a "high-functioning person" he looked up to, and he said people with Asperger's "are more susceptible to manipulation." He told jurors that he would express beliefs they would find abhorrent.

“I truly do like the fact that those senators and congressman were in fear for their lives,” Fellows told jurors near the end of his roughly 19-minute opening statement, doubling down on statements he had made on social media in the wake of the riot.

AJ McDougall at The Daily Beast:

A Jan. 6 defendant who represented himself in court after being accused of smoking marijuana in a senator’s office during the Capitol attack was held in criminal contempt on Tuesday, with the judge overseeing his trial smacking him with a five-month jail sentence before jury deliberations in the case were even set to begin. Brandon Fellows, 29, has been in custody since June 2021 on a federal felony charge of obstruction of an official proceeding and aiding and abetting, as well as a number of other misdemeanors. As his trial, which began last week, wrapped up on Tuesday, Fellows took the stand. Asked about sitting down in the office that belonged to Sen. Jeff Merkley (D-OR), Fellows remarked, “I didn’t know it was a senator’s desk. It felt very comfy.” He also insisted that the rioters “had the right to overthrow” the government on Jan. 6. Later, as U.S. District Judge Trevor McFadden explained to Fellows that he had forfeited his right to a rebuttal, Fellows replied, “I would expect nothing less from a kangaroo court,” according to NBC News. His contempt sentence was first reported by a Politico journalist. The jury is expected to begin deliberating on Fellows’ charges on Wednesday morning.

Canine Vaccine Hesitancy

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

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

Matt Motta Gabriella Motta b, Dominik Stecula "Sick as a dog? The prevalence, politicization, and health policy consequences of canine vaccine hesitancy (CVH)," Vaccine, August 26, 2023.

Abstract

Canine vaccine hesitancy (CVH) can be thought about as dog owners’ skepticism about the safety and efficacy of administering routine vaccinations to their dogs. CVH is problematic not only because it may inspire vaccine refusal – which may in turn facilitate infectious disease spread in both canine and human populations – but because it may contribute to veterinary care provider mental/physical health risks. In a nationally representative survey of US adults (N = 2200), we introduce a novel survey-based instrument for measuring CVH. We document pervasive CVH in dog owner subpopulations. Troublingly, we find that CVH is associated with rabies non-vaccination, as well as opposition to evidence-based vaccine policies. We conclude by discussing the human and animal health consequences of CVH, and outline a research agenda for future opinion-based research on this important topic.

In the survey, 37% agreed with this statement: "Some vaccines for dogs can cause them to develop cognitive issues, like canine/feline autism. (37%)"

ABLE Match Act

The Politics of Autism includes a discussion of the ABLE Act.

A July 26 release from Senator Bob Casey:

Today, on the 33rd anniversary of the passage of the Americans with Disabilities Act (ADA), U.S. Senator Bob Casey, Chairman of the U.S. Senate Special Committee on Aging, introduced new legislation to expand access to the Achieving a Better Life Experience (ABLE) program. The ABLE MATCH (Making ABLE A Tool to Combat Hardship) Act removes some of the financial barriers low-income Americans with disabilities face when enrolling in the ABLE program, which allows people with disabilities to save more than the $2,000 asset limit required in many federal assistance programs and was initially created in 2014 by Senator Casey’s ABLE Act.

“Over the last nine years, the ABLE program has been a lifeline for thousands of people with disabilities across the Nation,” said Chairman Casey. “However, there are still too many people whose lives would be made easier by the program, but don’t have sufficient funds to open an account. The ABLE MATCH Act will make it easier for low-income people with disabilities to access the ABLE program, and get the benefits they need and deserve.”

People with disabilities are more than twice as likely to live in poverty compared to people without disabilities, yet households including a person with a work-limiting disability need, on average, 28 percent more income to obtain the same standard of living as people without disabilities. For a long time, this intersection of disability and poverty was made worse by asset limitations for federal assistance programs that many people with disabilities rely on. The ABLE program has provided a work around this problem for more than 144,000 people with disabilities across the United States, who have saved an average of $9,715.

However, currently many people with lower incomes are discouraged from opening ABLE accounts because they do not have sufficient funds. The ABLE MATCH Act helps people with lower incomes participate in the ABLE program by creating a federal dollar-for-dollar match for new and existing ABLE accounts held by individuals that make $28,000 annually or less. The match then tapers off for each dollar a person earns over $28,000. This figure is also indexed to inflation and adjusted for heads of household and married couples. The ABLE MATCH Act will reward low-income people with disabilities for saving money for their disability expenses and health needs. This addition to ABLE program will help boost enrollment and improve the financial health of people with disabilities with lower incomes.

As the lead sponsor of the ABLE Act, passed in 2014, Senator Casey has long been a champion of ABLE accounts. He introduced the ABLE Age Adjustment Act to extend the eligibility of ABLE accounts from those who acquired their disability before the age of 26 to the age of 46. At an Aging Committee field hearing in August 2022, Senator Casey uplifted the success of the ABLE program and pushed for his bill to expand the program to 6.2 million additional Americans, including more than one million veterans. Senator Casey’s bill passed in December 2022 and takes effect in 2026.

Read more about the ABLE MATCH Act here.

Medicaid and IDEA

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

Shasta Kearns Moore and Emily Harris at NPR:

Since 1975, the Individuals with Disabilities Education Act (IDEA) has guaranteed children the right to a free public education, even if they have a disability that makes their education more expensive than average. Congress promised to fund 40% of those needs, but it's never even come close. In 2020, the National Education Association calculated the rate was just 13.2%.

Since 1988, Medicaid has slowly – though not completely – helped backfill for that lack of funding, allowing schools to get reimbursed for certain IDEA-required services, such as physical therapy for a child in a wheelchair.

But schools aren't always taking advantage.

Despite months of inquiries to districts in Oregon and across the nation, few officials would speak plainly and on the record about what's stopping them.

In an unsigned, emailed statement last spring, Winnie's school district, Portland Public Schools, described numerous barriers. Primary among them: The staff didn't think the burdensome process was worth it.

Wendy Niskanen, a board member for the National Association of School Nurses, echoed that concern: "Right now, the barriers are too great for most districts to do it."

Niskanen said schools aren't doctors offices, so they're not set up with the right training or software to do the kind of billing and documentation Medicaid requires.

It's a complaint Medicaid officials like Dan Tsai have heard from districts around the country.

"You have to bill for healthcare services in the same way that a hospital or a doctors office would bill, and most schools ... don't happen to have a medical expert coder sitting around."

GAO on HCBS

The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for adults with intellectual and developmental disabilities. Home and Community-Based Services (HCBS) are particularly important.

From the Government Accountability Office:

Medicaid: Characteristics of and Expenditures for Adults with Intellectual or Developmental Disabilities GAO-23-105457 Published: Apr 24, 2023. Publicly Released: Apr 24, 2023.

Intellectual or developmental disabilities, such as Down syndrome, are conditions that are present from childhood that may result in difficulties with learning, problem solving, and using everyday life skills. Medicaid home-and community-based services (HCBS) programs provide a range of services that can help individuals with these disabilities with daily activities, such as eating and bathing.

Reviewing Medicaid data for six selected states, GAO found that over 45 percent of beneficiaries with intellectual or developmental disabilities enrolled in HCBS programs had an additional health condition in 2019. Health conditions included behavioral health conditions, such as anxiety disorders, and chronic physical conditions, such as high blood pressure. Among beneficiaries enrolled in comprehensive HCBS programs, which cover round-the-clock care, the prevalence of behavioral health conditions was higher than in the overall Medicaid population.

GAO's analysis found that average per-beneficiary Medicaid expenditures in 2019 for beneficiaries with intellectual or developmental disabilities in selected states ranged from about $51,000 to $70,000. This is two to five times higher than the average expenditure for all Medicaid beneficiaries with disabilities.

 GAO's analysis also found for 2019:

HCBS expenditures lower than institutional costs: Average HCBS program expenditures were generally lower than states' estimated costs for serving beneficiaries with intellectual or developmental disabilities in institutional settings.

Expenditures higher for beneficiaries with additional health conditions: Expenditures were generally higher for beneficiaries with intellectual or developmental disabilities who had additional health conditions. For example, in comprehensive HCBS programs, expenditures were 13 to 40 percent higher for beneficiaries with a behavioral health condition than for those without.

 

Why GAO Did This Study

Medicaid is the nation's primary payer of long-term services and supports, including HCBS programs, for individuals with intellectual or developmental disabilities. Medicaid spending for these services was estimated at $23 billion in fiscal year 2018, the most recent year of nationwide estimates available. States are permitted to limit enrollment in certain HCBS programs and establish waiting lists. Research has shown people with intellectual or developmental disabilities comprised the majority of individuals on waiting lists for HCBS programs as of 2021, with wait times averaging over 5 years.

GAO was asked to provide information about the characteristics and health care expenditures among Medicaid beneficiaries with intellectual or developmental disabilities with long-term care needs. For selected states, this report describes (1) health and demographic characteristics, and (2) health care expenditures for adults with intellectual or developmental disabilities enrolled in Medicaid HCBS programs in 2019.

GAO analyzed Medicaid data for 2019, the most recent finalized year of data that preceded the COVID-19 pandemic, for six states. States were selected based on, among other things, having at least one HCBS program covering nonelderly adults with intellectual or developmental disabilities in 2019, and having data in the federal Medicaid data system of sufficient detail and quality to conduct analysis.

Average Per-Beneficiary Medicaid Expenditures, 2019

Theme Park and Travel Accommodations

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families -- as well as efforts to mitigate them.   One challenge is that autism is an "invisible disability," which does not have obvious physical markers.  

Jacob Passy at WSJ:

Theme parks, airlines and other businesses are stepping up efforts to weed out abuse by opportunists pretending to be disabled to save money or cut long lines.

Companies looking to stem the abuse increasingly are turning to nonprofits or credentialing agencies to determine who qualifies for exemptions. In July, Universal theme parks in California and Florida began requiring guests with disabilities to register ahead of their visits with the International Board of Credentialing and Continuing Education Standards. IBCCES, a for-profit company, also works with Six Flags theme parks across the U.S. and the Sesame Place park near Philadelphia.

Accommodations include front-of-line access or traveling with a service animal. This assistance is critical for disabled people for whom traveling already can be a Herculean task.

...

Amy Schinner, a theme-park researcher for travel-planning company Touring Plans, relies on accommodations at theme parks for her 25-year-old son, Ben, who is autistic. Her son has difficulty waiting in long lines for rides. Now, Universal visitors like her must fill out an online application through IBCCES that requires documentation of their condition and contact information for a healthcare, education or government professional.

Schinner says the documentation requirement could present challenges. The family provided a school document from 2006 in Benjamin’s application, but Schinner says she had easy access to the document mainly because the family recently moved and her son needed to apply for Social Security benefits.

“To get his records took a lot,” says Schinner, who lives in Winter Garden, Fla.

RFK v. Reality

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

Antivaxxers are sometimes violent, often abusive, and always wrong. A leading anti-vaxxer is presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.

Kate Yandell at Factcheck.org:

Another piece of Kennedy’s argument about vaccines and autism relates to timing. As we have discussed, the number of children with autism diagnoses has increased in the past several decades, although any true increase is likely small. There are also a variety of beneficial childhood vaccines that have become available in the last few decades and have been added to the CDC’s recommended vaccine schedule.

Of course, many things have increased in recent decades, and not all of them are related. “People like Kennedy can pick their favorite two trends that happen to be going in the same direction and point to them as causal,” Mandell said.

But when researchers have looked at how well trends in autism line up with vaccine introductions and changes, it contradicts the hypothesis that they are connected. For instance, one study found similar autism case trends in Sweden, Denmark and the U.S. from the mid-1980s through the late-1990s, even though thimerosal was removed from vaccines in Sweden and Denmark in the early 1990s.

Kennedy tries to argue for a more exact correspondence in the timing of an autism “epidemic” and a boom in childhood vaccines, focusing on the year 1989. He told Rogan that an Environmental Protection Agency study “said 1989 is the year the epidemic began. It’s a red line. And 1989 was the year the vaccine schedule exploded. That doesn’t mean that’s a correlation. It does not mean causation, but it is something that should be looked at.”

But it’s not possible to pinpoint the beginning of the increase in autism cases to 1989, Mandell said, given the sparseness of data on how many people had autism at that time.

Lord told us that “there is nothing special about 1989 in the frequency of autism. The increase has been relatively steady beginning in the 1970s and partly has to do with when there were prevalence studies in the U.S., U.K., and Canada.”

There is another explanation:  the Individuals with Disabilities Education Act of 1990, which made autism a reporting category.   In The Politics of Autism, I explain why the special-ed numbers increased:

In any policy area, the act of gathering data brings out cases. Counting may legitimize discussion of uncomfortable topics. It enables people with a condition to come forward as a group instead of solitary individuals. Official record-keeping opens a channel for reporting: once an organization announces that it is keeping count, people send it information. Such reactive effects are especially strong when benefits attach to membership in a category.

With a greater public awareness of general disability issues, and with the new language of IDEA, parents of autistic children began pressing local school districts to get their children into the system. Psychiatrist Allen Frances writes of a “positive feedback loop” between advocacy and the provision of services. As changes in diagnosis increased the population of identified autistic people and their families, they were better able to push for services, thereby increasing the number of people receiving such services.

Belief in the Myth That Vaccines Cause Autism

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

KFF Health Misinformation Tracking Poll Pilot

Overall, health misinformation is widely prevalent in the U.S. with 96% of adults saying they have heard at least one of the ten items of health-related misinformation asked about in the survey. The most widespread misinformation items included in the survey were related to COVID-19 and vaccines, including that the COVID-19 vaccines have caused thousands of deaths in otherwise healthy people (65% say they have heard or read this) and that the MMR vaccines have been proven to cause autism in children (65%).

"The MMR vaccines have been proven to cause autism in children" Percent who say that claim is probably true or definitely true:

Total 24%

Education

High school or less 31%

Some college                 23%

College degree         16%

Race/Ethnicity

Black                      35%

Hispanic                         25%

White                         21%

Gender

Men                                 22%

Women                         25%

Age

18-29                         23%

30-49                         29%

50-64                      25%

65+                                 15%

Party ID

Republicans         29%

Independents                 34%

Democrats                 14%

Community type

Rural                         25%

Suburban                         23%

Urban                         24%

Employment Services

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities.   I presented a paper titled "Autism and Accountability" at the 2020 Annual Meeting of the American Political Science Association. The abstract:

We expect policymakers to be accountable to the public for their handling of public issues. The case of autism presents fundamental difficulties. First, the boundaries of autism have shifted over the years, and they remain contested. Second, there are multiple publics with radically different views about the character of the issue. Third, there is no single “autism policy.” Instead, the issue spans multiple issue areas where responsibility is diffused and the connections between policy outputs and outcomes are difficult to establish. The paper ends with modest recommendations for improving our knowledge base.

Anne M. Roux and colleagues have an article at Milbank Quarterly titled "Unrealized Cross-System Opportunities to Improve Employment and Employment-Related Services Among Autistic Individuals."  Policy Points:

• Employment is a key social determinant of health and well-being for the estimated 5.4 million autistic adults in the United States—just as it is for citizens without disabilities. Evaluation and monitoring of publicly funded employment services is paramount given the dramatic increases in adults with autism who need job supports.
• Vocational Rehabilitation agencies appeared to be absorbing short-term employment needs of autistic people, but Medicaid was severely lacking—and losing ground—in serving those who need longer-term employment services.
• Across both Vocational Rehabilitation and Medicaid, we estimated that only 1.1% of working-age autistic adults who potentially need employment services are actually receiving them—leaving an estimated 1.98 million autistic individuals without the employment services that are associated with achievement of well-being.

From the article:

In general, state VR [vocational rehab] agencies administer short-term vocational services using a ratio of 79% federal funding granted by the RSA to 21% state matching funds.29 VR services do not have income eligibility thresholds but do require evidence of functional limitations that restrict ability to work. In contrast, Medicaid HCBS 1915(c) waivers fund long-term supported employment services and related supports using proportions of state dollars and federal matching funds,30 which generally vary between 50% and 75%.31 Eligibility for HCBS waivers is based on both disability and income criteria set by states, which range from 83% to 300% of the federal poverty level.32 Both VR and Medicaid guidance prioritize employment in community-based settings integrated with workers without disabilities.33,34 Legal and administrative infrastructure that support these priorities include a revision to Medicaid HCBS federal regulations known as the “HCBS Settings Rule,” the Workforce Innovation and Opportunity Act (WIOA) of 2014 (formerly the Rehabilitation Opportunities to Improve Employment Autism 5 Services Act) governing VR, Department of Justice actions to enforce integration in least restrictive settings, and state definitions of integrated employment.

However, a complicated relationship exists between VR- and Medicaid-funded employment services. Federal policies, including the WIOA, require that Medicaid and VR avoid duplication of services while simultaneously facilitating coordination across these service systems.33 For example, Medicaid HCBS policy requires that individuals exhaust VR employment supports before Medicaid waiver funds can be utilized.30 Meanwhile, the WIOA emphasizes that state VR agencies formally collaborate with the state Medicaid agency and state I/DD agencies in delivery of vocational services.34 Publicly available information illuminating how collaboration is executed in terms of service delivery and payment across systems, however, is limited.35

The degree of complexity within and between VR- and Medicaid-funded employment services is reflected in the administrative burden that autistic people and their families encounter when attempting to access and navigate services through these programs. Administrative burden includes effort required to understand the services these programs fund, psychological costs of being found ineligible for services and having to reapply, and compliance costs in dealing with requirements such as documentation.36 Service seekers weigh these costs against the assumed benefits of accessing services, and this self-assessment is influenced by other stressors in the person’s life and perceptions of how respectfully they are treated within administrative processes.37 Perhaps as a result of administrative burden, in addition to a scarcity of needed employment services, parents of autistic youth and those with other developmental disabilities describe encountering a “services cliff” as youth exit the special education services they were entitled to during high school and enter the fragmented world of adult disability-related services, each with its own administrative burden.8,38 

8. Roux AM, Shattuck PT, Rast JE, Rava JA, Anderson KA. National Autism Indicators Report: Transition into Young Adulthood. A.J. Drexel Autism Institute; 2015. Accessed March 27, 2023. https://policyimpactproject.org/transitioninto-young-adulthood-full-re

 29. Rehabilitation Act: Vocational Rehabilitation State Grants. Congressional Research Service; 2014. Accessed March 23, 2023. https://www.everycrsreport.com/files/20141230_R43855_d5a0c2acc49edfe1fa726907c4d8cad01b94de2d.pdf 

30. Butterworth J, Winsor J, Smith FA, et al. StateData: The National Report on Employment Services and Outcomes. Institute for Community Inclusion; 2015. Accessed March 27, 2023. https://scholarworks.umb.edu/ici_pubs/74/

31. Federal medical assistance percentage (FMAP) for Medicaid and multiplier.Kaiser Family Foundation. Accessed August 9, 2021. https://www.kff.org/medicaid/state-indicator/federal-matching-rate-and-multiplier/

32. State financial eligibility criteria for Medicaid HCBS waivers by target population. Kaiser Family Foundation. Accessed March 23, 2023.https://www.kff.org/other/state-indicator/state-financial-eligibility-criteriafor-medicaid-hcbs-waivers-by-target-population

33. Updates to the Section 1915(c) Waiver Instructions and Technical Guide regarding employment and employment related services. Centers for Medicare & Medicaid Services. September 16, 2011. Accessed June 22, 2022.https://www.hhs.gov/guidance/document/updates-1915c-waiver-instructionsand-technical-guide-regarding-employment-and-employment

34. The State Vocational Rehabilitation Services Program Before and After Enactment ofthe Workforce Innovation and Opportunity Act in 2014. Rehabilitation Services Administration; 2020. Accessed March 17, 2023. https://rsa.ed.gov/sites/default/files/publications/state-of-vr-program-after-wioa.pdf

35. Boeltzig H, Winsor J, Haines K. Research to Practice: Collaboration betweenState Intellectual and Developmental Disabilities Agencies and State Vocational Rehabilitation Agencies: Results of a National Survey. Institute for Community Inclusion; 2011. Accessed March 23, 2023. http://scholarworks.umb.edu/ici_researchtopractice/3

36. Moynihan D, Herd P, Harvey H. Administrative burden: learning, psychological, and compliance costs in citizen-state interactions. J Public Adm Res Theory.2015;25(1):43-69. https://doi.org/10.1093/jopart/muu009

37. Herd P, Moynihan D. Administrative burdens in health policy. J Health HumServ Adm. 2020;43(1):3-16. doi:10.37808/jhhsa.43.1.2

38. Bagenstos SR. The disability cliff. Democracy. 2015;(35):55-67.

Prevalence in England

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

Elizabeth O'Nions and colleagues have an article in Lancet Regional Health Europe titled "Autism in England: assessing underdiagnosis in a population-based cohort study of prospectively collected primary care data."

Summary

Background

Autism has long been viewed as a paediatric condition, meaning that many autistic adults missed out on a diagnosis as children when autism was little known. We estimated numbers of diagnosed and undiagnosed autistic people in England, and examined how diagnostic rates differed by socio-demographic factors.

Methods

This population-based cohort study of prospectively collected primary care data from IQVIA Medical Research Data (IMRD) compared the prevalence of diagnosed autism to community prevalence to estimate underdiagnosis. 602,433 individuals registered at an English primary care practice in 2018 and 5,586,100 individuals registered between 2000 and 2018 were included.

Findings

Rates of diagnosed autism in children/young people were much higher than in adults/older adults. As of 2018, 2.94% of 10- to 14-year-olds had a diagnosis (1 in 34), vs. 0.02% aged 70+ (1 in 6000). Exploratory projections based on these data suggest that, as of 2018, 463,500 people (0.82% of the English population) may have been diagnosed autistic, and between 435,700 and 1,197,300 may be autistic and undiagnosed (59–72% of autistic people, 0.77%–2.12% of the English population). Age-related inequalities were also evident in new diagnoses (incidence): c.1 in 250 5- to 9-year-olds had a newly-recorded autism diagnosis in 2018, vs. c.1 in 4000 20- to 49-year-olds, and c.1 in 18,000 people aged 50+.

Interpretation

Substantial age-related differences in the proportions of people diagnosed suggest an urgent need to improve access to adult autism diagnostic services.

 Evidence before this study

We searched PubMed from database inception to October 17th, 2022 using the search terms: (1) ‘autism’, and (2) ‘incidence’ or ‘prevalence’ or ‘underdiagnosis’ or ‘under-diagnosis’, without language restrictions. This identified articles describing the global incidence and prevalence of autism. Some studies identified rates of diagnosed autism, and others used active sampling approaches (community case-finding) to identify the numbers of autistic individuals both diagnosed and undiagnosed in a population. The vast majority of studies focused on rates of autism in children. There was a high degree of variability in estimated autism prevalence by year, by region, and by method of case ascertainment. Most studies investigating time-trends reported increasing rates of diagnosed autism over the past 20 years. No studies estimated the extent to which autism was underdiagnosed at a national level or inequalities in diagnosis by comparing diagnosed autism prevalence for a nationally-representative population of children and adults with estimates of true autism prevalence.

Added value of this study

This study is the first to estimate underdiagnosis of autism using data from English primary care for more than 5 million individuals, a critical question given the key role of diagnosis in providing health and social services to autistic people. We are the first to provide upper and lower bound projected estimates of autism underdiagnosis in England, and to establish how these vary according to key demographic and clinical indices. Applying estimates of true prevalence derived from community case-finding studies and the highest rate of diagnosed autism in any age-band in this dataset, we found evidence suggesting high levels of underdiagnosis, particularly in older age groups. We estimate that between 150,000 and 500,000 people aged 20–49 years, and between 250,000 and 600,000 people aged 50+ in England may be autistic but undiagnosed.

Implications of all the available evidence

Community case-finding studies indicate that the true prevalence of autism has been stable over the last 70–80 years. Therefore, these findings highlight continuing inequalities in access to autism diagnostic assessments for adults in England, and suggest that policy initiatives designed to address underdiagnosis in adults have not yet been effective.

Supporting Autistic College Students

In The Politics of Autism, I discuss the growing number of college students on the autism spectrum. 

At WCVB-TV, Dr. Christopher Keary with Massachusetts General Hospital's Lurie Center for Autism discusses the different types of support young adults with autism spectrum disorder need when starting college.

 

Training the NYPD

In The Politics of Autism, I discuss interactions between police and autistic people.  When cops encounter autistic people they may not respond in the same way as NT people, and things can get out of hand. Among other things, they may misinterpret autistic behavior as aggressive or defiant, and respond with tasers, batons, chokeholds, or worse.

Posts have discussed incidents in the following places:

• Orlando
• Richmond, VA
• Jackson County, KS
• Glynn County, GA
• Douglas County, CO
• Graymoor-Devondale, KY
• Vacaville, CA
• Metrairie, LA
• Salt Lake City
• Statesville, NC
• Buckeye, AZ

This list is not exhaustive.  Indeed, it does not even scratch the surface.

Police training could be helpful, but we also need programs to evaluate the implementation and effectiveness of the training.

A release from the Mayor of New York:

New York City Mayor Eric Adams, New York City Department of Education (DOE) Chancellor David C. Banks, and New York City Police Department (NYPD) Commissioner Edward Caban today announced a new partnership between the DOE and the Police Academy aimed at working with young people with autism and other developmental disabilities. Experts from the DOE’s Special Education Office led a day-long training in person at the Police Academy on behaviors and responses of students with autism and other developmental disabilities and to educate NYPD recruits on responsible and compassionate ways to communicate with all young people.

...

This partnership signifies the first time the DOE has been invited to directly participate in the training of NYPD recruits. Experts from the DOE will visit the Police Academy on a regular cadence going forward, hosting trainings for each class of recruits, starting with the current training class.

During the training session, participants not only develop an understanding of autism and communication-based disabilities but learn strategies to support students with autism and other developmental disabilities during crises, responding effectively and increasing the use of thoughtful communication tools. Participants also received an overview of school supports for students when they are in crisis and tools interventions schools use prior to calling for emergency services.

Autism and Worship

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

A number of posts have discussed religion -- a source both of strength and difficulty.

Terry Mattingly at Religion Unplugged:

Many modern churches may be weak when it comes to architecture and sacred art, but they almost always have concert-level lighting, sound and multimedia technology.

But in a few sanctuaries linked to ancient traditions, worship leaders are trying something different. In some Eucharistic services, they are offering worshippers with autism an atmosphere that is more calm and less intense.

"If you look at many church services from the point of view of highly sensitive people — especially autistic children -- there is too much noise, too many lights," said Father Matthew Schneider, known to online Catholics as @AutisticPriest. "We can turn down the lights. We can turn down the volume. We can do a few things to accept these families and let them feel more comfortable."

For neurodivergent people, it actually helps that ancient rites are built on repeated gestures, prayers and music that become familiar. Schneider experienced this phenomenon in seminary but grasped its importance when he was diagnosed as autistic several years after his ordination.

"If you do something over and over, then I know what's coming. I have time to take that in. I know what is happening and why," said Schneider, who currently teaches theology at Belmont Abbey College near Charlotte, North Carolina.

"If you throw me a curveball, it may take me some time to get over the shock. That's just a reality for autistic people. ... If I'm familiar with a service — stand up, kneel down, look right, look left — that can become comfortable."

Special Ed Teacher Shortage

 In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act. II also discuss the day-to-day challenges facing autistic people and their families. 

Meghan Whittaker, OSERS Special Assistant

Today, more than 60% of students with disabilities spend at least 80% of their day in general classes. This wouldn’t be possible without special educators who help to customize curriculum that is accessible to all and ensure the individual needs of students with disabilities are met.

Special educators serve a critical role in our nation’s public school, yet 45% of schools reported vacancies in special education roles, and 78% reported difficulty in hiring special education staff. Special education teacher shortages have been a longstanding challenging in most states and have only worsened since the start of the COVID-19 pandemic.

Amid a dramatic teacher shortage nationwide, states and districts have faced the tension between the difficulties in recruiting and retaining special educators and the qualification requirements special educators must meet. States have found innovative solutions to meet these requirements in the face of a worsening educator shortage and are using federal funds to support them.

Indiana and Tennessee provide examples of how states are creatively addressing educator shortages. Additionally, the states’ programs leverage state and local partnerships to create sustainable pathways that maintain high standards while also improving the preparation and retention of special educators.

Shanna Bodenhamer at Institute of Education Sciences:

Special education teachers are essential to our nation’s ability to provide a free and appropriate public education to the 7.3 million students with disabilities that attend our public schools. But significant shortages in qualified special educators affect the ability of our public schools to provide equal educational opportunities for all students.

A nationwide survey of schools in 2022 reported that vacancies in special education were nearly double that of other subject areas. This survey also found that 65% of public schools in the United States reported being understaffed in special education. Even prior to the pandemic, there was a downward trend in the number of special education teachers. One study found the numbers decreased by 17% between the years 2005-12. Research has also shown that the number of teachers leaving the field of special education is among the largest contributors to the growing shortage. High job demands without adequate support and resources may lead to teacher burnout, which may, in turn, lead to teachers leaving the profession. Because teacher burnout and general working conditions are real concerns, NCSER has funded projects to take a closer look at this problem and find potential solutions. This blog highlights a few of these projects below.

Elizabeth Bettini at Boston University led a research project exploring special educator working conditions. The research aimed to provide an understanding of how instructional resources, planning time, and support from colleagues affect teacher instruction and student outcomes, as well as explore how administrators view their role in providing supportive working conditions for special educators. They found that teachers who provided high-quality instruction had a trusted co-teacher, consistent paraprofessionals with time and support for training, and protected time for instruction.