Disparities in Autism Screening

In The Politics of Autism, I discuss the evaluation and diagnosis of young children.  Screening is an important part of the process.

Harrison, A.J., Bowman, K.L., Bub, K.L. et al. Examining Sociodemographic Factors Related to Autism Screening Rates of Children in Early Intervention. J Autism Dev Disord (2025). https://doi.org/10.1007/s10803-025-07154-7

Abstract:

Purpose

Routine developmental screening is essential for early identification of autism. Reliable autism screening is even more valuable for individuals from minoritized groups who are often under-detected and receive later diagnoses. Despite this importance, disparities in access to screening and accurate identification persist. Given these disparities, we were interested in examining group differences in autism screening rates at 18 and 24 months of age among children referred to Georgia’s Part C Babies Can’t Wait (BCW) program between 2018 and 2022.
Method

Among a sample of 52,282 infants and toddlers enrolled in BCW, as hypothesized males and children with private insurance had higher screening likelihoods compared to females and children with public insurance.

Results

Unexpectedly, Black and Hispanic children were more likely to be screened than their counterparts. To examine this further, an examination of screening timing revealed that White and male children were more likely to be screened before their referral to BCW compared to peers.

Conclusion

This reveals continued inequities in screening timing but suggests that BCW providers serve an important role in identifying children who may have been missed in other settings.

From the article:

Using a large sample of families participating in state-funded EI, the current study documented continued sociodemographic variability in terms of autism screening rates and the timing of autism screening among young children. The first research question focused on who received screening and the second research question focused on timing differences within children who were screened. In alignment with previous research (Eldeeb et al., 2023; Evans et al., 2018; Kuhn et al., 2021), we found that males and children from families with private insurance were more likely to be screened at either 18- or 24-months compared to females and families that did not report having private insurance. In this dataset, we observed a higher prevalence of autism screening rates among Black children compared to White peers, and Hispanic children compared to non-Hispanic children. More specifically, within this dataset, Black and Hispanic males living in metropolitan settings were more likely to be screened compared to White and non-Hispanic peers. This finding contradicts past research showing inequities in screening rates among racially and ethnically diverse children (Aylward et al., 2021; Carbone et al., 2020; Hirai et al., 2018; Mandell et al., 2009; Wiggins et al., 2020). To further explore the current dataset, among those with screening data we examined if this date was before or after their enrollment into BCW. It was revealed that the unique racial finding indicated an underlying screening disparity in regard to timing. Among the subset of children screened, we observed that White children were significantly more likely to be screened before enrollment in EI (BCW), whereas Asian, Native American and Alaskan, and Black children were more likely to be screened after entry into BCW. These data highlight that delays in screening are still prominent for some minoritized groups but also demonstrate how community agencies can help ensure universal screening across groups.

Early screening of autism primarily falls under the jurisdiction of primary care physicians engaging in early well visits (Coury et al., 2017). Previous research has documented that autism screening is not equitable across practices. For example, pediatricians with high rates of patients with Medicaid have very low rates of autism screening (Arunyanart et al., 2012). The sociodemographic differences observed in this study reveal the continued prominence of screening disparities among minoritized racial and ethnic groups in these traditional screening settings. This also aligns with research from minoritized communities documenting a lack of support from primary care physicians (Horiuchi et al., 2023; Mendoza et al., 2024), which leads to the need to advocate with greater fervor to receive care equitable to peers. Given these persistent sociodemographic screening discrepancies in primary care settings (Wallis, 2021), other community providers are being called upon to help fill the early autism screening gap (Fein et al., 2017; Nowell et al., 2015). In this study, the higher screening rates within BCW for Black and Hispanic children not previously screened highlight the crucial role EI providers can play in improving screening disparities. These study findings align with the documented gap that Spanish-speaking Latine parents often encounter between when they first voice their concerns and the actual age of diagnosis (Wallis et al., 2022).

The finding in this study that autism screening more readily occurred in males compared to females aligns with much of the existing literature (Eldeeb et al., 2023; Evans et al., 2018). These persistent findings reflect the bias to more readily notice autism in children representing the White male autism phenotype (Cruz et al., 2024; D’Mello et al., 2022). Thus, more research must focus on better understanding the female autism phenotype and how it may be overlooked using current screening and diagnostic assessment practices (Napolitano et al., 2022). For example, autistic females may have strengths in their social-communication skills and have a higher tendency to mimic and imitate social skills when compared to autistic males, which might result in hesitancy to deem screening necessary (Head et al., 2014).

Of note, geography or urbanicity also played a meaningful role in our findings. Children from rural areas were more likely than those from metropolitan areas to be screened before BCW and children from micropolitan areas were less likely to be screened before entry into BCW (e.g., screened later than children in metropolitans). The difference between metropolitan and micropolitan areas aligns with previous research showing a higher prevalence of autism rates in urban areas of the United States that likely have a high density of university-medical centers, such as Atlanta, Georgia (Bradshaw et al., 2024). This is likely due to differences in proximity to qualified providers, available resources at the county level, and other sociodemographic factors that are often associated with rural settings (e.g., education level and race; Bradshaw et al., 2024; Vanegas et al., 2023). The finding that children from rural areas were being screened earlier than metropolitan areas was less expected. Research documenting close relationships between rural doctors and patients might serve as one potential explanation for this finding (Desjarlais-deKlerk & Wallace, 2013) but this does not align with the majority of the published data (Antezana et al., 2017).

Families with lower incomes have documented disparities in accessing a myriad of treatments (Smith et al., 2020) and assessment services (Zuckerman et al., 2014). Similar to past research documenting diagnostic disparities tied to public insurance (Kuhn et al., 2021), in this study, children from families reporting having private insurance were more likely than those that did not report it to be screened. General factors preventing equitable care reported by families most commonly include financial stress, a limited number of available providers and resources, a lack of parent and/or provider education, and societal stigma (Aylward et al., 2021; Elder et al., 2016; Zuckerman et al., 2017), many of which have a financial component. Barriers specific to the low-income community documented in the literature include the pronounced shortage of adequate providers among households that rely on Medicaid (Aylward et al., 2021). Parents often serve a crucial role in the identification process (Raspa et al., 2015); however, documented knowledge deficits among low-income populations related specifically to the early childhood delays most related to autism also can contribute to screening delays (Campbell et al., 2019).

 

Demographics and Experience of Discrimination

In The Politics of Autism, I discuss the civil rights of people with autism and other disabilities.

Menezes, M., Linde, J., Howard, M. et al. Associations Among Demographic and Clinical Characteristics and Discrimination Experiences of Autistic Youth. J Autism Dev Disord (2025). https://doi.org/10.1007/s10803-025-07019-z.  Abstract:

Purpose

Autistic individuals experience discrimination as a neurominority. Nonetheless, there has been limited research on characteristics or factors contributing to discrimination against autistic people. Therefore, this study sought to examine demographic and clinical predictors of discriminatory experiences of autistic children and adolescents utilizing a large, population-based sample. 

Methods

Data were obtained from the 2021 and 2022 National Survey of Children’s Health, a nationally distributed caregiver-report questionnaire. Participants included 2,297 autistic youth (6–17 years old). Two separate binary logistic regressions were conducted for the prediction of race or ethnicity discrimination and health condition or disability discrimination. Predictors were child age, sex, race, ethnicity, autism “severity,” behavior problems, and intellectual disability, and household income.

Results

Results demonstrated a relationship between minoritized racial and ethnic background and increased likelihood of discrimination due to race/ethnicity and health condition/disability. Relationships between older age and greater odds of race/ethnicity and health condition/disability discrimination experiences were also found. Furthermore, “more severe” autism, intellectual disability, and challenging behavior were associated with increased odds of health condition/disability discrimination.

Conclusion

This study highlights characteristics of autistic youth that may increase their risk for experiencing discrimination and should inform practices and policies to reduce discrimination against autistic people.

Discussion:

This study examined demographic and clinical predictors of discriminatory experiences of autistic youth. Results demonstrated an association between minoritized racial and ethnic background and likelihood of discrimination due to race or ethnicity and health condition or disability. Relationships between older age and greater odds of race/ethnicity and health/disability discrimination experiences were additionally found. Furthermore, “more severe” autism, ID, and challenging behavior were related to an increased likelihood of an autistic young person having experienced discrimination due to health condition or disability.

Aligned with hypotheses, increased odds of race or ethnicity discrimination were found for autistic youth identifying as Black, Asian, multiracial, and another (non-White) racial identity (i.e., American Indian/Alaska Native or Native Hawaiian/Other Pacific Islander), as well as for Hispanic or Latino autistic children and adolescents. These findings align with previous research on racial discrimination experiences of the general population of marginalized youth (Datu, 2018; Lee et al., 2019) and marginalized youth with special health care needs (Helton et al., 2023). Results further previous research by demonstrating an association between minoritized racial and ethnic backgrounds and increased risk for race/ethnicity discrimination within the autistic community, which should prompt the implementation of policies and practices to address the complex vulnerabilities autistic youth from minoritized racial and ethnic backgrounds experience.

An increased likelihood of race or ethnicity and health condition or disability discrimination was found for older age, which was not predicted. This could result from bullying, harassment, and other forms of victimization and discrimination increasing as youth have more contact with external discriminatory systems as well as individuals in older childhood and adolescence (Fisher et al., 2000; Greene et al., 2006). In addition, victims may become more aware of their differing treatment. Peer victimizers may also become more perceptive of differences in characteristics (e.g., social differences associated with autism), and the general population may be less tolerant of social and behavioral differences in older children and adolescents than younger children (Locke et al.,2017; Rotheram-Fuller et al., 2010).

 

California Data

In The Politics of Autism, I discuss evaluation and diagnosis.

O’Sharkey, K., Mitra, S., Paik, Sa. et al. Trends in the Prevalence of Autism Spectrum Disorder in California: Disparities by Sociodemographic Factors and Region Between 1990–2018. J Autism Dev Disord (2024). https://doi.org/10.1007/s10803-024-06371-w

Abstract

Autism Spectrum Disorders (ASD) prevalence has risen globally, with regional variation and sociodemographic disparities affecting diagnosis and intervention. This study examines ASD trends from 1990 to 2018 in California (CA), focusing on sociodemographic factors that may inform policy/interventions. Using CA Department of Public Health birth records (1990–2018) and Developmental Services ASD cases (1994–2022), we analyzed diagnosis incidence by age 4 or 8, stratified by sociodemographic and regional factors. From 1990 to 2018, for each birth year the cumulative incidence of ASD by 4 and 8 years of age in CA increased while the diagnosis age decreased. Distinct patterns emerged over these three decades. Children born to White and Asian and Pacific Islander (API) mothers, or to mothers with higher education or living in high socioeconomic status (SES) neighborhoods exhibited higher ASD cumulative incidences throughout the 1990s and early 2000s. However, in the mid-2000s, ASD incidence in children born to Black or Hispanic mothers, with low education, or living in low SES neighborhoods surpassed that of White/API children or those living in high SES neighborhoods. Black or Hispanic children now have the highest ASD cumulative incidence, even though age at first diagnosis remains lowest in high SES regions, for the highly educated, and for White/API children. ASD cumulative incidence in CA from 1990 to 2018 exhibited demographic reversals with higher rates in children born to Black or Hispanic mothers or lower SES neighborhoods. Black and Hispanic children still have delayed age at diagnosis compared to White/API children.

Black Families and Autism Diagnosis

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. 

 Wendy Chung at STAT:

In two separate studies of Black families with autism, partially funded by SPARK, investigators from Vanderbilt University and the University of Arkansas found that cultural barriers, stigma, and a basic lack of understanding of autism often led to delays in seeking an initial diagnosis. What’s more, when Black families did seek an evaluation or tried to access services, many experienced cultural bias and overt racism. Both studies underscore the role of misinformation, misperception, and misunderstanding in perpetuating false narratives about autism and increasing the amount of anxiety parents felt about receiving a diagnosis.

The Vanderbilt study documents the lived experience of 400 Black or multiracial families seeking care. In it, one in 10 parents said they delayed seeking an evaluation for their child because they simply did not know enough about autism and its signs. When Black parents did seek help, they often encountered a system misaligned with their needs. Parents noted evaluations that relied on toys and activities their children weren’t familiar with, clinicians who didn’t understand their culture, and a scarcity of available, affordable resources within their communities.

Early Intervention and Racial Disparities

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. 

 Mendez, A. I., McQueen, E., Gillespie, S., Klin, A., Klaiman, C., & Pickard, K. (2024). Access to Part C, Early Intervention for children younger than 4 years evaluated for autism spectrum disorder. Autism, 0(0). https://doi-org.ccl.idm.oclc.org/10.1177/13623613241229150 

Lay abstract:

Health disparities are defined as preventable differences in the opportunities to achieve optimal health outcomes experienced by marginalized and underrepresented communities. For families with autistic children, health disparities limit accessing early intervention services—which have been found to improve quality of life and other outcomes. One specific early intervention service in the United States is Individuals with Disabilities Education Act, Part C Early Intervention programs, which are federally funded interventions for children birth-to-three with developmental delays. This study adds to this topic by examining which factors impact accessing Part C, Early Intervention services for children who were evaluated for autism. Results showed that only half of the sample received these services despite there being concerns about development for all children. In addition, results showed that those who identified as Black had decreased odds of having accessed Part C, Early Intervention compared to those who identified as White. These results suggest that there are disparities when it comes to accessing important early intervention services that may be negatively impacting the Black autistic community.

From the article:

This study provides important information on treatment disparities for children with an increased likelihood of having autism prior to receiving a diagnostic evaluation for autism. This is an important question to understand, given the growing recognition of the EI system being an entry point to therapeutic supports for many children who go on to receive a medical diagnosis of autism (Eisenhower et al., 2021). Although families of children with developmental delays are able to access Part C EI services irrespective of a medical diagnosis of autism, only half of the participating children were reportedly receiving EI services prior to their diagnostic evaluation, despite all children having developmental concerns that supported a referral for an autism evaluation. In fact, available data on clinical characteristics, including intellectual and developmental skills, revealed no significant differences between children who were and who were not reportedly receiving EI services. This finding persisted even when only considering children who were later diagnosed with autism—only 50% of autistic children had accessed EI services prior to their diagnostic evaluation. These children would have shown clinically significant levels of impairment in social communication and restrictive and repetitive behavior and therefore have all been eligible for EI services.

Although research has not yet examined the developmental trajectories of children who do and do not receive EI services, it is possible that delayed or no enrollment in EI services has negative consequences for child development and family well-being (Adams et al., 2013). Access to Part C, EI may also support enrollment into Part B special education services through the school system. Research suggests that 88% of children enrolled in Part C, EI go on to receive Part B services (i.e. special educations services), whereas only 46.5% of children with developmental delays receive Part B services if they were not previously enrolled in Part C EI services (Shenouda et al., 2022). Therefore, missing the opportunity to enroll in EI services can have long-term effects in the enrollment of and access to special education services after children turn 3 years old.

When investigating the unique role of sociodemographic factors on parent-reported access to EI services, race and age of first parental concern were each related to reported EI service access. More specifically, Black families reported a lower likelihood of having received EI services. This finding is largely consistent with literature demonstrating that Black children experience a number of disparities in accessing autism services, and EI services specifically (Constantino et al., 2020; Shenouda et al., 2022). However, we now know that these disparities are present within broader systems of care that support children prior to an autism diagnosis. Furthermore, the results of this study corroborate the importance of first parental concern (Angell et al., 2018). For this sample, children whose parents became concerned about their development at a younger age were slightly more likely to access EI services. Given that EI services are only available for children birth to 3 years old, it follows that those whose parents notice developmental differences earlier have more time to access those services.

 

Access to Early Intervention (EI) and Early Childhood Special Education (ECSE)

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

 A report from  The National Institute for Early Education Research:

The federal Individuals with Disabilities Education Act (IDEA) affords eligible children the civil right of access to special education.1 Access to Early Intervention (EI) and Early Childhood Special Education (ECSE) is essential to support children with disabilities at an early age, setting an early, strong developmental foundation, and putting them on a path towards success. As this report finds, not all young children are equally likely to have access to these important services. 

...

Our key findings are as follows. 

1.The Covid-19 pandemic resulted in fewer children receiving EI and ECSE services. Moreover, the pandemic led to a much larger decrease in EI services for Asian children and a much larger decrease in ECSE for Black children than for others. Such differential decreases cannot be justified, and steps should be taken to address the needs of children who missed out on services. 

2.Asian, Hispanic, and Black children areless likely to receive both EI and ECSE services than are White non-Hispanic children. For Black children, the disparities in access to services are especially large and cannot plausibly be explained by differences in need. These differences are indefensible and should be eliminated. 

3.Boys are twice as likely as girls to receive EI and ECSE. Potential reasons including biological differences need further study.4

4.The percentage of children served in EI and ECSE increases with state median income. Young children in states with the lowest incomes are least likely to receive IDEA services. Whether or not children receive EI and ECSE should not depend on the wealth of the state in which a child lives

 1 Early Childhood Technical Assistance Center (2023). Fact Sheet: Advancing Racial Equity in Early Intervention and Preschool Special Education. Retrieved from: https://ectacenter.org/~pdfs/ topics/racialequity/factsheet-racialequity-2023.pdf 

2 Natural Environments for infants and toddlers receiving early intervention refers to “settings that are natural or typical for a same-age infant or toddler without a disability, may include the home or community settings.” For additional information, see: https://sites.ed.gov/idea/regs/c/a/303.26 

3 The Least Restrictive Environment requirement in IDEA stipulates that “students with disabilities receive their education alongside their peers without disabilities, to the maximum extent appropriate.” For more information see the IRIS Center Information Brief: https://iris.peabody.vanderbilt.edu/wp-content/ uploads/pdf_info_briefs/IRIS_Least_Restrictive_Environment_InfoBrief_092519.pdf 

4 Skårbrevik, K. J. (2002). Gender differences among students found eligible for special education. European Journal of Special Needs Education, 17(2), 97-107

Black Single Female Caregivers

 In The Politics of Autism, I write about the everyday experiences of autistic youths and caregivers.

At SSM - Qualitative Research in Health, Jennifer S. Singh has an article titled "Intersectional analysis of autism service inequities: Narratives of Black single female caregivers."

Abstract

Despite the wide range of research on autism disparities in early identification, diagnosis, and access to services in racial and ethnic minorities in the United States compared to White children, few studies focus distinctly on the experiences of Black single female caregivers of children with autism. The dominant research and cultural narrative of White, married, and upper-middle-class families of a child with autism devalues the standpoint and experiences of caregivers whose social and economic position situates their differential experience of raising a child with a disability. Based on a narrative analysis of three Black single female caregivers who have a child diagnosed with autism and rely on Medicaid health insurance in the southern United States, this study offers an intersectional analysis of autism service inequities in diagnosis and services driving evident disparities based on race, gender, and social class. The analysis highlights intersecting ideological, political, and economic domains and associated institutions (i.e., education, employment, housing, and governing laws) that reflect and shape these narratives of autism service inequities. This study re-centers much-needed attention to the silent voices of Black single female caregivers made invisible in the structure of our society and offers a way forward by thinking critically about universal systems of care that can benefit all people.

From the article:

One important finding of this narrative analysis was the effects of caregiving on the mental and physical health of Black single caregivers raising a child with autism. This finding was also evident in the larger sample (Hong & Singh, 2019). While there is limited research in this area, especially among minority caregivers, population-based research indicates that the burden and stress on caregivers have a greater physical impact (i.e., more chronic illnesses and functional limitations) for Black mothers (Lee et al., 2022). Future research in this area is needed to investigate the long-term physical and mental impacts of structural inequities on parenting a child with autism at the intersection of race, class, and gender.

 

Vicious Beating of Autistic Teen

In The Politics of Autism, I write:

People with disabilities are victims of violent crime three times as often as people without disabilities. The Bureau of Justice Statistics does not report separately on autistic victims, but it does note that the victimization rate is especially high among those whose disabilities are cognitive. A small-sample study of Americans and Canadians found that adults with autism face a greater risk of sexual victimization than their peers. Autistic respondents were more than twice as likely to say that had been the victim of rape and over three times as likely to report unwanted sexual contact.

 Emma Seiwell and Thomas Tracy at NY Daily News:

Detectives have identified the three teens who allegedly beat a 15-year-old autistic boy in an upper Manhattan subway station as others yelled the n-word at him in an attack that police are investigating as a possible hate crime.

The three teens hadn’t been arrested by Tuesday, as community activist groups decried the sheer viciousness and flippant racism seen in the video.

The boy, sporting glasses and a blue hooded sweatshirt, was pulled off a northbound A train at the 181st St. station near Fort Washington Ave. in Washington Heights around 5:30 p.m. Friday, cops said.

Video taken of the attack shows one teen handing the victim off to a teenage girl who grabs him by his sweatshirt and forces him to walk down the crowded platform.

“Walk!” the girl screams as her frightened victim tries to get back on the train. Commuters stare as she force-marches the boy down the platform..

After being shoved down the platform, the teen tries to break free, but the girl grabs his sweatshirt tighter.

“You runnin’!” she screams. “Why you runnin’!”

As a crowd gathers, several onlookers start screaming “N----- alert!” as the victim, who is Black, tries to break free one more time and jumps back on the train.

UPDATE:

 

Cops arrest 14-year-old boy they say took part in hate-fueled beating of 15-year-old autistic boy in Manhattan subway station, police say

Investigators charged him with misdemeanor assault, aggravated harassment and menacinghttps://t.co/wydZmRE0Lh

— New York Daily News (@NYDailyNews) March 15, 2023

Racial and Ethnic Disparities

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. 

At JAMA Netw Open,  Bennett M. Liu and colleagues have an article titled "Racial and Ethnic Disparities in Geographic Access to Autism Resources Across the US."

Key Points

Question  Do autistic children belonging to minoritized racial and ethnic groups have access to fewer autism resources than White autistic children in the US and, if so, where are these disparities most significant?

Findings  In this cross-sectional study involving 530 965 autistic children and 51 071 autism services in the US, analyses by core-based statistical area revealed that American Indian or Alaska Native, Black or African American, and Hispanic or Latino autistic children had access to significantly fewer resources than White autistic children.

Meaning  These findings suggest that autistic children from minoritized racial and ethnic groups experience significant disparities in access to autism services, with certain core-based statistical areas having greater inequities than others, necessitating a prioritized response strategy to address these disparities.

Prevalence and Inequality

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

 Aria Bendix at NBC:

Autism rates tripled among children in the New York and New Jersey metropolitan area from 2000 to 2016, according to a study published Thursday in the journal Pediatrics.

The authors, a team from Rutgers University, calculated the trend by analyzing Centers for Disease Control and Prevention estimates of the number of children who've been identified as having autism spectrum disorder by age 8.

Although there is no medical test for autism, the CDC has established a network of 17 sites across the country that estimate autism rates based on a combination of formal medical diagnoses and records from schools and health care providers.

Nationally, the rise in autism rates has been similar to the trend in New York and New Jersey, according to a 2021 CDC report. One in 54 children had been diagnosed with autism by age 8 in 2016, compared to 1 in 150 in 2000.

Advances in diagnostic capabilities and greater understanding and awareness of autism spectrum disorder seem to be largely driving the increase, the Rutgers researchers said. But there’s probably more to the story: Genetic factors, and perhaps some environmental ones, too, might also be contributing to the trend.

Precisely what those other factors are is still unknown, but researchers are at least clear on one fact: Autism has nothing to do with vaccines.

"We know for sure, for so many years now, that vaccines don’t cause autism," said Santhosh Girirajan, an associate professor at Pennsylvania State University who studies the genetic underpinnings of neurodevelopmental disorders and wasn't involved in the new study.

A release from Rutgers:

“One of the assumptions about ASD is that it occurs alongside intellectual disabilities,” said Josephine Shenouda, an adjunct professor at the Rutgers School of Public Health and lead author of the study published in the journal Pediatrics. “This claim was supported by older studies suggesting that up to 75 percent of children with autism also have intellectual disability.”

“What our paper shows is that this assumption is not true,” Shenouda said. “In fact, in this study, two-in-three children with autism had no intellectual disability whatsoever.”

Using biannual data from the New Jersey Autism Study, researchers identified 4,661 8-year-olds with ASD in four New Jersey counties (Essex, Hudson, Ocean and Union) during the study period. Of these, 1,505 (32.3 percent) had an intellectual disability; 2,764 (59.3 percent) did not.

Subsequent analysis found that rates of ASD co-occurring with intellectual disability increased two-fold between 2000 and 2016 – from 2.9 per 1,000 to 7.3 per 1,000. Rates of ASD with no intellectual disability jumped five-fold, from 3.8 per 1,000 to 18.9 per 1,000.

Shenouda said there may be explanations for the observed increases, though more research is needed to specify the precise causes.

“Better awareness of and testing for ASD does play a role,” said Walter Zahorodny, associate professor at the Rutgers New Jersey Medical School and senior author on the study. “But the fact that we saw a 500 percent increase in autism among kids without any intellectual disabilities – children we know are falling through the cracks – suggests that something else is also driving the surge.”

ASD prevalence has been shown to be associated with race and socioeconomic status. The Rutgers study identified that Black children with ASD and no intellectual disabilities were 30 percent less likely to be identified compared with white children, while kids living in affluent areas were 80 percent more likely to be identified with ASD and no intellectual disabilities compared with children in underserved areas.

Underserved Communities and Autism

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. 

At CNN, Kathleen Toner reports on Illinois autism mom Debra Vines:

“My whole life revolved around finding services for Jason. To be able to get any type of assistance I had to take a train, plane, bus, and a magic carpet to get there,” she said. “Multiple cocktails of medication, changing doctors, changing hospitals. And most of it I did alone because my husband worked nights. I felt totally helpless.”

The support groups that she did find were in affluent communities. Not only was it hard for her to get to without a car, but when she did arrive, she felt out of place.

“I was the only Black woman there, I was the only person that had low income,” she said. “The women – they were great. They were giving me resources. But they would say, ‘They only cost $500.’ And I’m trying to figure how I’m going to get groceries for next week. Imagine how I felt then – even more helpless.”

...

In 2007, Vines and her late husband, James Harlan, created The Answer Inc., a nonprofit that supports families in underserved communities who’ve been impacted by autism. To date, Vines says the group has provided programming and guidance to more than 4,000 families in the Chicago area.

“Families are always asking questions, and we want to provide the answers,” she said. “I would say 95% of everything that we provide is a blueprint of what I was missing as a parent.”

Many of those who Vines supports are from Black and Brown communities – a demographic known to face hurdles in the diagnosis and treatment of autism. The CDC reports that Black and Hispanic children are less likely to be identified with the condition, and researchers at Boston University found that Black children are five times less likely to receive early intervention services than white children – due in part to racial bias and cultural stigma.

Autism, Race, Poverty, and Health

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Health problems are prominent among them.

A release from Drexel University:

The Autism Intervention Research Network on Physical Health (AIR-P), a multi-site collaboration housed within UCLA Health's Department of Medicine since September 2020, and the Health Services Systems Node of AIR-P, based at the Policy and Analytics Center at Drexel University's A.J. Drexel Autism Institute, have released the latest National Autism Indicator's Report using national data to highlight the intersection of autism, poverty, race/ethnicity and their compounding impact on health and health care.

While it is well known that autistic children, children from lower-income households, and children who are Black, Indigenous and people of color (BIPOC) disproportionally experience poor health and health care access, very little is known about how these social identities “intersect” to impact health and health care outcomes. Better understanding the intersectionality of these characteristics will allow for more targeted and tailored interventions to improve health outcomes. The new report finds that autism, poverty and non-white race/ethnicity appear to increase rates of health concerns and care challenges, both individually and in combination.“Discrimination based on race and socioeconomic status is increasingly recognized as an important risk factor to people’s health,” said Alice Kuo, MD, PhD, chief of Medicine-Pediatrics at UCLA and project investigator for the federally-funded AIR-P. “With this report, we can begin to see the devastating combination of autism, poverty and race, an important step in translating the research we do into policy and practice to improve outcomes for people with autism.”

“Findings like these are important because policymakers, decision-makers and advocates use this information to better understand the needs of the autism population and guide the development of targeted programs and services” said Kristy Anderson, PhD, a researcher at the Autism Institute and first author of the report.
Report Highlights

To better understand the economic situation of autistic children, the report provides new estimates about the size and characteristics of the population living in lower-income households overall, and by key subgroups defined by race and ethnicity. According to the report, over half of autistic children lived in low-income households and one in four was living in poverty, a higher rate compared to children without autism spectrum disorder. Children living in low-income households were more likely to be non-white relative to the general population.

Across all income levels, autistic children experienced more challenges than non-autistic children across a wide range of health outcomes. 

• Both poverty and race/ethnicity independently, and in combination, contributed to health inequities among autistic children.
• Household income was a very important factor for understanding health disparities for autistic individuals, as it is associated with differences in health status, insurance coverage, medical expenditures and health care access.
• Higher rates of health-related challenges were evident across all socioeconomic groups.
• While children living in poverty generally had the highest rates of health and health care challenges regardless of autism status, and rates typically decreased with each level of rising income, there were still notable differences in the relationship between income and health and health care among autistic children versus non-autistic children.
• Race/ethnicity were also risk factors for poor health and health care outcomes among autistic children.
• Differences between white and BIPOC children were also present across specific racial/ethnic categories.
• Racial/ethnic disparities remained, even when grouping data by household income.

The report found that groups who had multiple potential risk factors (poverty, autism, identifying as BIPOC) had higher rates of poor health and health care outcomes. In some cases, the differences observed between income groups were more substantial than the differences associated with autism status, or between white and BIPOC children. The authors argue that efforts to reduce health inequities must be combined with efforts to improve the economic stability of children, especially those with autism and those who are BIPOC. They call for greater attention to programs and policies outside of health care to address health equity among U.S. autistic children.

The Pandemic Worsened Delays

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

Delays for Autism Diagnosis and Treatment Grew Even Longer During the Pandemic

Andy Miller and Jenny Gold, Kaiser Health News March 30, 2022

Wylie James Prescott, 3, had to wait more than a year after his autism diagnosis to begin behavioral therapy, even though research shows early treatment of autism can be crucial for children’s long-term development.

His mother, Brandie Kurtz, said his therapy wasn’t approved through Georgia’s Medicaid program until recently, despite her continued requests. “I know insurance, so it’s even more frustrating,” said Kurtz, who works in a doctor’s office near her home in rural Wrens, Georgia.

Those frustrations are all too familiar to parents who have a child with autism, a complex lifelong disorder. And the pandemic has exacerbated the already difficult process of getting services.

This comes as public awareness of autism and research on it have grown and insurance coverage for treatment is more widespread. In February, Texas became the last state to cover a widely used autism therapy through Medicaid. And all states now have laws requiring private health plans to cover the therapy, applied behavior analysis.

Yet children from Georgia to California often wait months — and in many cases more than a year — to get a diagnosis and then receive specialized treatment services. Therapies that can cost $40,000 or more a year are especially out of reach for families who don’t have insurance or have high-deductible health plans. Children from minority communities and those who live in rural areas may face additional barriers to getting help.

“You would never allow a kid with cancer to experience these waits,” said Dr. Kristin Sohl, a pediatrician at University of Missouri Health Care and chair of the American Academy of Pediatrics’ Council on Children With Disabilities Autism Subcommittee.

During the early months of the covid-19 pandemic, many families canceled in-home services, fearing infection. Virtual therapy often didn’t seem to work, especially for nonverbal and younger children. With fewer clients, some providers laid off staff or shut down entirely.

And treatment services always face high turnover rates among the low-wage workers who do direct, in-home care for autism. But covid made the staffing problem worse. Companies now struggle to compete with rising wages in other sectors.

The Centers for Disease Control and Prevention estimates that autism affects 1 in 44 U.S. children, a higher prevalence rate than ever before. Autism symptoms can include communication difficulties and repetitive behaviors and can be accompanied by a range of developmental and psychiatric health conditions.

Early diagnosis of autism can make a difference, Sohl said. Symptoms of some kids who begin their therapy by age 2 or 3 can be greatly reduced.

Diagnoses are typically done by developmental-behavioral pediatricians, psychologists, psychiatrists, and neurologists, all of whom are in short supply. The shortage of developmental pediatricians is especially acute. Even though they do three more years of fellowship training than a general pediatrician does, developmental pediatricians typically earn less.

General pediatricians with training can also do assessments, but insurers often require a specialist’s diagnosis before paying for services, creating a bottleneck for families.

“If we solely rely on specialists, we’re setting ourselves up for failure because there aren’t enough of us. We need the insurance companies on board,” said Dr. Sharief Taraman, a pediatric neurologist and president of the Orange County, California, chapter of the American Academy of Pediatrics.

Even in a metro area, getting a child an appointment can take months. “We cannot get these families in fast enough,” said Dr. Alan Weintraub, a developmental pediatrician in suburban Atlanta. “It’s heartbreaking.”

Some parents pay cash for an evaluation with a private specialist, worsening disparities between kids whose parents can afford to skip the wait and those whose parents cannot.

Once a child has been diagnosed, many face an equal — or longer — wait to get autism therapies, including applied behavior analysis, a process that aims to improve social, communication, and learning skills. These sessions can take more than 20 hours a week and last more than a year. ABA techniques have some critics, but the American Academy of Pediatrics says that most evidence-based autism treatment models are based on ABA principles.

Accessing such treatment largely depends on insurance coverage — and for many families how well Medicaid pays. The Georgia Medicaid program reimburses well for ABA, Georgia doctors said, while Missouri’s pay is low, leading to a scarcity of options there, Sohl said.

In California, Medicaid reimbursement rates vary by county, and wait times for ABA range from about three to 12 months. In the rural northern reaches of the state, where few providers work, some families wait years.

During the first year of the pandemic, Claire Hise of Orange County was thrilled with the ABA therapist who worked with her son. But in January 2021, the therapist quit to go back to school. The company she was working with sent others. Hise had to train each new therapist to work with her son, a difficult process that always took more than a month. “It’s a special relationship, and each kid with autism is an individual,” Hise said. “It takes time.”

By then, they were out the door, replaced by another after no more than four to six weeks. Sometimes the family waited weeks for a replacement.

Hise tried switching to another company, but they all had a six-month waitlist. “He’s already so far behind,” Hise said. “It’s really a year I feel we’ve lost.”

The average age of diagnosis in the U.S. is about 4 years old, but Black and Latino children on average are evaluated later than white kids.

“The impact on families having to wait for diagnosis or treatment can be devastating,” said Kristin Jacobson, founder of the Autism Deserves Equal Coverage Foundation, an advocacy group in California. “They know in their gut something is seriously not right and that there is help out there, and yet they are helpless to do anything about it.”

Araceli Barrientos helps run an autism support group in Atlanta for immigrant families, for whom language barriers can cause additional snags. It took her over a year to get her daughter, Lesly, diagnosed and two more years to secure further treatment.

Sabrina Oxford of Dawson, in rural southwestern Georgia, had to take her daughter Jamelyn more than 150 miles to the Marcus Autism Center in Atlanta to get her diagnosed. “You don’t have any resources around here,” Oxford said.

Dr. Michelle Zeanah, a behavioral pediatrician, draws families from 60 mostly rural counties to her clinic in Statesboro, Georgia. “There’s a massive shortage of people willing and able to do an autism diagnosis,” she said.

Getting insurance to pay for autism treatment can be another frustrating process for families. Therapy denials can be triggered by clerical errors or missed paperwork. Insurer approvals can be especially difficult for older children, who can be less likely to get treatment services than younger ones, said Dr. Donna Londino, a child and adolescent psychiatrist at Augusta University in Georgia.

Many children with autism also need speech, occupational, and physical therapy, all of which are generally easier to secure than behavioral therapy. But even then, Weintraub said, the insurers push back: “They really dictate how many services you can have. These families, literally, meet obstacles at every turn.”

David Allen, a spokesperson for AHIP, an insurance industry trade group formerly known as America’s Health Insurance Plans, said insurers often require prior authorization to ensure that autism services are “medically necessary and evidence-based” and that patients are treated by “providers with appropriate education and training in treating autism.”

Tracy-Ann Samuels of New York said she paid out-of-pocket for speech and occupational therapy for her son, Trey, now 15. Two years ago, after 18 months on a waiting list, he finally got ABA services covered by insurance. 

“He’s doing so great,” she said. “My son was nonverbal. Now he’s talking my ear off.”

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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Patterns of Identification

In The Politics of Autism, I discuss evaluation and diagnosis.

Amy N. Esler and colleagues have an article at The Journal of Autism and Developmental Disorders titled "Patterns of Special Education Eligibility and Age of First Autism Spectrum Disorder (ASD) Identification Among US Children with ASD."

This study focused on timing of ASD identification in education versus health settings, including variation by key demographic factors, and the extent to which ASD characteristics are documented in educational evaluations for DD versus ASD eligibility. Educational settings are an important source of ASD identifcation, as they are by law accessible to all children and not just those with access to healthcare insurance coverage. Further, all states offer Part C services that provide evaluation and early intervention services to children from birth to age 3 years. Despite this access, our study found that children with records from education-only sources received their first comprehensive developmental evaluation and were identified with ASD over a year later than children with records from health sources. The median age of first evaluation for children from education-only sources was over 4 years, compared to under 3 years for children seen in health or health and education sources. This late age of evaluation is inconsistent with evidenced-based practices in early intervention for ASD as well as any DDs, which indicate that interventions provided in sensitive periods of brain development in early childhood can lead to positive outcomes (e.g., Campbell & Ramey, 1994; Dawson et al., 2012). The finding of later age of evaluation also implies that it is not educational eligibility practices and the use of the DD category instead of the ASD category that are delaying ASD identification; children were seen for any kind of evaluation in educational settings later than those seen in health setting.

Later evaluation and later identification in education-only sources was a consistent finding across sex, race/ethnicity, and presence of ID. Children with ID were identified earlier than children without ID across all record sources, but education-only sources were significantly later than health and health and education sources. In addition, Black, non-Hispanic, Asian, and Hispanic children were more likely to have education-only records compared to White, non-Hispanic children, which may suggest disparities in access to evaluations in health settings that might have resulted in earlier identification and intervention. Our findings are consistent with past research that both identified relatively later age ofidentification in education settings (Pettygrove et al., 2013) as well as lower utilization of health source evaluations for Black children (Yeargin-Allsopp et al., 2003) and Hispanic children (Pettygrove et al., 2013). In our analyses, age of identification and age of frst evaluation did not differ for health-only compared to health and education evaluations for most groups, with the exception that Black, non-Hispanic children with health-only records were evaluated later than Black, non-Hispanic children with health and education records. Black children with health-only and educational-only records had similar median age of first evaluation. This finding may suggest that, for Black children in our sample, access to services in both the educational and health systems facilitated earlier evaluation

Texas Is a Tough State

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act. Some states do a reasonably good job with education and social services, but Texas has not been one of them. A 2016 Houston Chronicle investigation revealed that tens of thousands of disabled students  were refused access to services because of a de-facto enrollment cap.

Lauren Castle at The Fort Worth Star-Telegram:

Forty-six percent of Texas children ages 9 months to 35 months received a developmental screening, according to 2018-2019 data from the Annie E. Casey Foundation. The Centers for Disease Control and Prevention recommend that all children should have a developmental screening and formal test even if there are no concerns.

While pediatricians are able to help families with concerns on child development, continuous health care can be a challenge for some families. Dr. Christina Robinson, medical director at the University of North Texas Health Science Center’s pediatric mobile clinic, has noticed patients facing multiple barriers to care.

...

“We have noticed that there is usually not just one barrier, but layers of barriers our families are struggling with,” Robinson said. “When one barrier may not exist one time, the next time you see them another barrier might be there when the other one hasn’t resolved.”

 The state’s Early Childhood Intervention program underwent a federal investigation that concluded in 2020. The US Department of Education determined that not all of the young children eligible for the agency’s programs were provided services, according to an Oct. 2020 letter sent to the Texas Health and Human Services Commission.

Texans Care for Children, a policy organization, stated in a 2020 report that the state program overall was under-enrolling infants and toddlers across the state, and disparities were seen among children of color. “In 2018, Texas [Early Childhood Intervention] served 2.34 percent of children under age three, compared to the national average of 3.74 percent, ranking the state 46th in the nation,” the Texans Care for Children report stated. “While Texas [Early Childhood Intervention] enrollment is low for children of all backgrounds, it is disproportionately low for Black children.”

RFK Jr. v. Black People

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 antivaxxer is Robert F. Kennedy, Jr.

David A. Love at Yahoo:

Kennedy has faced much-deserved criticism for his anti-vaccination documentary, Medical Racism: The New Apartheid, which spreads lies about vaccines and targets Black people to make its points—and a lot of money. Particularly sinister is the reality that Black people, who have suffered from a long legacy of medical racism, disproportionately suffer and die from a host of diseases, including COVID-19. The film claims vaccines are harmful to the health of Black people and compares the “dangerous experimental” vaccination of Black people in Haiti, Africa and the U.S. to the infamous Tuskegee syphilis experiment. In Tuskegee, the U.S. government used Black men as guinea pigs, leaving their syphilis infections untreated and allowing them to suffer and die from the disease. Penicillin would have treated those Black people, just as the COVID vaccine is saving Black lives today—a vaccine Kennedy believes Black people should not take.