Advocacy Programs for Latino Families

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. 

Burke, M. M., S. Ramos-Torres, G. H. Espinosa, et al. 2025. “ Testing an Advocacy Program to Improve Service Access Among Latino Families of Autistic Youth: A Randomized Controlled Trial.” Autism Research 18, no. 8: 1714–1724. https://doi.org/10.1002/aur.70068.

ABSTRACT

Families of transition-aged youth with autism often struggle to access services. Due to systemic barriers, Latino, Spanish-speaking families of autistic youth especially struggle to access services. One way to improve service access is through parent advocacy abilities (i.e., knowledge of adult services, advocacy abilities and comfort, empowerment). To improve parent advocacy abilities and, ultimately, service access, we conducted a randomized controlled trial to test the feasibility and efficacy of an advocacy program: ASISTIR (Apoyando a nueStros hIjo/as con autiSmo obTener servIcios de tRansición; Supporting our Children with Autism to Obtain Transition Services). Of the 30 participants who were retained for analyses, intervention (vs. waitlist-control) group participants demonstrated significant increases in knowledge about adult services, advocacy activities, advocacy skills and comfort, and empowerment. Further, intervention (vs. waitlist-control) group participants demonstrated significantly greater service access. Implications for research and practice are discussed.

Trial Registration: clinicaltrials.gov: NCT06207149

Summary

• It can be hard to find services for autistic youth.
• There are unique barriers to services for Latino autistic youth.
• To improve access to services, we tested an advocacy program (called ASISTIR).
• The ASISTIR program was comprised of 24 h of instruction about adult services.
• Altogether, 30 families participated in the study.
• Some families were randomized to the intervention group, and some families were randomized to the waitlist-control group.
• Families in the intervention group were significantly more likely to be knowledgeable about adult services, comfortable with advocacy, and empowered.
• Intervention group families also reported greater services.

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.

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.

Disparities in California

 In The Politics of Autism, I discuss services for people with disabilities.

Regional centers are private nonprofits that contract with Califorinia's Department of Developmental Services to coordinate or provide services for people with developmental disabilities. The 21 regional centers help disabled people and their families help find and access a variety of services.

From Disability Voices United

Disability rights advocates released an alarming new report this week outlining deepening racial and ethnic disparities within California’s developmental disability services system, leading to dramatically reduced opportunities and potentially dangerous situations for adults with developmental disabilities.

DOWNLOAD REPORT: A MATTER OF RACE AND PLACE

“The 2022 Disability Voices United report paints a disturbing picture of systemic discrimination throughout California, despite numerous programs and $66 million spent to reduce chronic inequities,” said Judy Mark, Disability Voices United President, and mother of a son with autism. “In a state that claims to be as progressive and multi-cultural as California, people with developmental disabilities receive radically different levels of services depending on their race, ethnicity, or the region where they live. Our government cannot continue to allow this discrimination to continue.”

The new data show disparities are most glaring in Latino communities, where adults can receive as little as 43 cents for every dollar spent on services for white adults. Geography also plays a role. For example: a white adult in Golden Gate Regional Center (San Francisco) gets an average of $85,295 in services annually versus Latino adults at Inland Regional Center (San Bernardino) who receive $19,813 and Asians at Central Valley Regional Center (Fresno) who get only $17,299 in average annual services.

“As parents and advocates, we know that a day that goes by without services for our children is a day that can never be replaced. We need to see that same level of urgency from all of the 21 regional centers,” said Fernando Gomez, co-founder of the Integrated Community Collaborative and father of a teenage son with developmental disabilities. “We’re tired of excuses and our children can’t afford to wait. We can’t leave behind another generation of Latinos because the State allows inequities to plague our regional center system.”

The new Disability Voices United report is entitled “A Matter of Race and Place: Racial and Geographic Disparities Within California’s Regional Centers Serving Adults with Developmental Disabilities.” It looks at service funding levels at regional centers across California and includes detailed analysis based on race, ethnicity and geography. The DVU report follows a study released earlier this year by Public Counsel focusing on children of color with developmental disabilities, called “Examining Racial and Ethnic Inequities Among Children Served Under California’s Developmental Services System: Where Things Currently Stand.” The Public Counsel report also found that inequitable funding remains deeply rooted and is worsening between Hispanic and white children at most regional centers.

“Sadly, California’s regional center system still operates haphazardly with wild inconsistencies in funding,” said Brian Capra, senior staff attorney with Public Counsel and author of the report. “DDS continues to use a convoluted funding formula that gives unequal resources to different regional centers and employs a laissez-faire approach to service delivery that allows inequities to fester. Tragically, our most disadvantaged families continue to get the least amount of support.”

The reports include a list of recommendations to end disparities, including more regional center oversight, transparency and monitoring. They also recommend targeting funding that is tied to accountability and results

Disability Voices United is a California statewide advocacy organization exclusively directed by and for individuals with developmental disabilities and their families. DisabilityVoicesUnited.org

Public Counsel is the nation’s largest provider of pro bono legal services, utilizing an innovative legal model to promote justice, hope, and opportunity in lower-income and communities of color in Los Angeles and across the nation. PublicCounsel.org

The Integrated Community Collaborative supports Latino families affected by developmental disabilities in navigating support systems on a peer-to-peer basis through its Integradora Program to address cultural and language barriers to obtaining equitable services. IntegratedCommunityCollaborative.org

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

How to Improve Screening

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

A release from the Boston University School of Medicine:

Autism spectrum disorder (ASD) typically develops in children before age 3, but less than half of children are accurately diagnosed with ASD before age 4. Although pediatric advocates recommend that children at risk of ASD receive screening through early intervention (EI) services provided by states, the program often lacks effective screening tools to detect and diagnose this disorder.

Now, a new study led by a Boston University School of Public Health (BUSPH) researcher found that implementing a multi-stage screening protocol for ASD in early intervention services may lead to a 60 percent increase in ASD detection, compared to standard screening.

Published in the journal JAMA Pediatrics, the study also underscored the importance of monitoring for disparities in ASD. The increased rate of ASD detection was nearly twice as high for Spanish-speaking families as for non-Spanish-speaking families, helping to reduce a well-documented health disparity.

The study is the first comprehensive evaluation of ASD screening in EI settings and includes comparison with non-screened EI settings. Unlike standard approaches to screening, which are often limited to providing questionnaires for parents, the multi-component screening protocol in this study includes input from parents and EI providers in the decision-making process for a child’s ASD diagnosis, as well as training for EI providers and ongoing collaboration between the EI providers and the EI sites’ program directors and research assistants.

“When implemented with appropriate supports and access to diagnostic services, screening can really move the needle on the early detection of autism,” says Dr. Radley Chris Sheldrick, study lead author and research associate professor of health law, policy & management at BUSPH. “If implemented in a culturally sensitive way, it can also reduce health disparities in autism diagnoses, which have been well-documented in the literature.”

For the study, Dr. Sheldrick and colleagues analyzed administrative data that was collected by the Massachusetts Department of Public Health and included records for 33,326 children aged 14 to 26 months who were enrolled in services at 12 EI agencies in the greater Boston area from 2012 to 2018. The ASD screening was implemented at three of the EI sites, and the researchers used records from the nine non-screened sites for comparison.

Parents or caregivers began the multi-stage screening protocol by completing questionnaires about their children’s social and emotional behavior. If indicated, they and their children then completed an observational assessment known as the Screening Tool for ASD in Toddlers and Young Children (STAT) with their EI providers, who received specialized training to administer the STAT. EI providers were also encouraged to participate in the ASD diagnostic and feedback evaluations, which occurred in the final stage of the process.

Compared to standard practice, this multi-stage screening process was associated with an additional 8.1 diagnoses per 1,000 children—and an additional 15.4 diagnoses per 1,000 children in Spanish-speaking families. Among non-Spanish-speaking families, the researchers observed a smaller increase in the rate of ASD detection, at an additional 6.9 diagnoses per 1,000 children.

In addition to racial disparities, the researchers also observed gender disparities (consistent with prior research) that showed that boys were significantly more likely to be screened and diagnosed with ASD than girls: the screening was associated with an additional 14.8 diagnoses among boys versus an additional 0.5 diagnoses among girls.

“We did not anticipate this finding, and we believe it highlights the importance of monitoring all points in the care process—whether or not disparities are expected,” Dr. Sheldrick says, noting that the study was limited to diagnoses. “Further research is needed to ensure equitable access to effective services for those who need them.”

At SPH, the study was co-authored by Dr. Megan Cole Brahim, assistant professor of health law, policy & management.

Cultural Differences and Autism Research

 In The Politics of Autism, I discuss diagnosis, which depends on observation of behavior.  There are multiple problems with this approach, including cultural differences.

At Autism Research, Megan Golson and colleagues have an article titled "Cultural differences in social communication and interaction: A gap in autism research."  The lay summary:

A diagnosis of autism requires the presence of deficits in social communication and interaction. Examples of these behaviors and skills include holding a back-and-forth conversation, the use of nonverbal communicative behaviors (e.g., gestures), and developing and maintaining social relationships. Culture influences the expectations for, and presentation of, these behaviors. However, research on this topic is lacking. Conducting more research related to culture and social communication could help reduce the disparities in autism identification across racially and ethnically minoritized populations.

From the article: 

Differing developmental and cultural expectations are problematic as the majority of diagnostic measures forautism are normed on fairly homogenous samples representing predominately White, Western individuals with minimal guidance on how practitioners can increase culturally responsive assessment practices (Harris et al.,2014). Stronach and Wetherby (2017) found that Black and Latinx caregivers reported more autism symptoms and SC/I deficits than White caregivers. Additionally,Black and Latinx children had significantly lower scores on speech-language observation measures than White children. Whether this is due to cultural differences inlanguage expression or examiner scoring bias is unclear.

California Disparity

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

Arlene Marinez at California Health Report:

Services for children and adults with developmental disabilities are coordinated through regional centers — private, nonprofit organizations that contract with California’s Department of Developmental Services. The state’s 21 regional centers serving 240,000 children and adults act as gatekeepers to a vast array of supports, including physical therapy, speech therapy, occupational therapy and respite care, for people with developmental delays. The centers conduct developmental screenings, determine eligibility for services and coordinate care.

But the number of services provided through regional centers varies vastly from region to region, and between racial and ethnic groups. Among the most striking disparities is the amount of money regional centers spend on services for children from Spanish-speaking households compared to those from their English-speaking counterparts. A 2020 Public Counsel study of youth ages 3 to 21 living at home found that, for every $1 an English-speaking child received in fiscal year 2018-2019, a Spanish-speaking child received 82 cents — a disparity that grew 46 percent over the previous four years.

...

 A big reason for the disparity is language, advocates said. Securing services can be difficult and time consuming for any family. But English-speakers are more likely than those with no or limited English proficiency to understand how the regional center system works and to have the linguistic and economic resources to fight it.

Autism, COVID, and Food Insecurity

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

From Autism Speaks

In November and December of 2020, we sent a follow-up survey to a larger group of recipients. This time, we asked even more detailed questions about how they were being affected by the pandemic, where they live and their situations. This helped us understand more about who is experiencing the most hardship due to COVID-19 so that we can focus our efforts on outreach and support into those communities. Here’s what we learned: FINDING: Households of people with autism are experiencing significant food insecurity, especially minority households, compared to households with no disability. 

HOUSEHOLD FOOD INSECURITY RATES BEFORE AND AFTER COVID-19

• Children with no disability 20%  before 27.1% after
• Children with autism 41% before 57% after

         HOUSEHOLD FOOD INSECURITY RATES, FALL 2020

• No disability 27.1%
• Person with autism, white 43.8%
• Person with autism, black non-Hispanic 65.7%
• Person with autism, Hispanic 74.5%

 Source except where noted: Food Insecurity in Households of People with Autism Spectrum Disorder During the COVID-19 Pandemic, Autism Speaks, December 2020.

*Source: Karpur A, Vasudevan V, Frazier T, Shih A, Lello A. Food Insecurity in the Households of Children with Autism Spectrum Disorders and Intellectual Disabilities in

the U.S.: Analysis of the National Survey of Children’s Health Data 2016 - 2018. Autism. (in review).

**Source: https://disabilitycompendium.org/event

Inequality in Special Education

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. 

Todd E. Elder, David N. Figlio, Scott A. Imberman. and Claudia L. Persico at Education Next:

Research has consistently found that minority students are identified with disabilities at higher rates than white students, based on straightforward comparisons of classification rates across racial groups. Such comparisons are how federal special education law defines and regulates “disproportionality” in the share of students identified with a disability within schools and districts, which triggers increased monitoring and intervention by states.

But recent research has shown that the story becomes more complex when minority students are compared not to all white students, but to white students of similar socioeconomic status. These studies find that minority students are less likely than otherwise similar white students to be identified for special education. This finding raises the possibility that Black and Hispanic students may be less likely to receive the specialized services they need. Is “disproportionality,” as it is typically understood and measured, the real problem? What role does school segregation play in special education rates?

We explore these questions by examining the birth records and eventual special education status of every child born in Florida between 1992 and 2002. The birth records capture both infant and maternal health, as well as demographics and economic circumstances, allowing us to compare students born into similar circumstances whose observable characteristics differ only by race and the racial compositions of their local schools.

Our results show that, by 4th grade, the disability rate among Black students is 13 percent lower than it would have been if they were identified at the same rate as white students born into similar economic and health circumstances. For Hispanics, the overall identification rate is 8 percent lower than what we would predict for similarly situated white students.

These gaps play out differently based on the racial composition of schools. Black and Hispanic students are placed in special education more often than their peers when they are in majority-white schools. But in predominately minority schools, when surrounded by other non-white students, Black and Hispanic students are less likely to be placed in special education. In 4th grade, a Black student attending school where more than 90 percent of students are minorities is roughly 9 percentage points less likely to be identified as disabled than an observationally identical Black student in a school with fewer than 10 percent minorities.

Our estimates suggest that minority students in heavily-minority school groups are underrepresented in special education relative to their underlying incidence of disability. While public debate has fixated on the harmful effects of too many Black and Hispanic students being identified as having special needs, our results echo the recent research suggesting that, in fact, too few minority students are being provided the educational services they need to thrive. Given ongoing public focus on equity and disproportionality, and the longstanding goal of closing gaps in educational achievement between white and non-white students, such widespread underrepresentation has substantial implications.

Change in Diagnosis Pattern

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

Alix S. Winter, Christine Fountain, Keely Cheslack-Postava, and Peter S. Bearman have an article at Proceedings of the National Academy of Sciences titled The Social Patterning of Autism Diagnoses Reversed in California between 1992 and 2018."

Significance

Rates of autism diagnosis in the United States have historically been higher among more advantaged social groups—Whites and those of higher socioeconomic status (SES). Using data from all births in the state of California in 1992 through 2016, we find that these trends reversed during our study period. By 2018, diagnosed autism incidence rates for 3- to 6-y-old children were higher for children of Black and Asian mothers than children of non-Hispanic White mothers and were higher for children of lower SES than of higher SES parents. These reversals point to the fundamental role that access to knowledge and resources plays in driving increased autism prevalence and shifting patterns of autism cases over the past quarter-century.

Abstract

As rates of autism diagnosis increased dramatically over the past number of decades, prevalence rates were generally highest among Whites and among those of higher socioeconomic status (SES). Using a unique, population-level dataset, we find that rates of autism diagnosis continued to be on the rise in recent years, but who is diagnosed changed during the study period. Our data consist of birth records of all 13,272,573 children born in the state of California in 1992 through 2016 linked to autism caseload records for January 1992 through November 2019 from California’s Department of Developmental Services. California’s diagnosed autism incidence rate rose from 0.49 per 1,000 3–6 y olds in 1998 to 3.49 per 1,000 3–6 y olds in 2018, a 612% increase. However, diagnosed incidence rates did not rise uniformly across sociodemographic groups. By 2018, children of Black and Asian mothers were diagnosed at higher rates than children of non-Hispanic White mothers. Furthermore, among children of non-Hispanic White and Asian mothers, children of lower SES were diagnosed at higher rates than children of higher SES. These changes align with sociological theories of health disparities and contain important clues for more fully understanding the autism epidemic.

From the article:

Multiple factors likely help account for the recent rise of autism diagnoses among children of lower SES parents and parents of color. In 2006, the American Academy of Pediatrics recommended universal screening for autism during well-child visits at 18 mo of age (40), a recommendation that, if implemented, decouples autism diagnosis from parents’ access to knowledge. Additionally, autism has strong advocacy in the United States (41) and in California specifically. As of 2009, California’s state Senate includes the Senate Select Committee on Autism and Related Disorders, which has spearheaded legislation to improve linguistic and cultural competency at the DDS’ regional centers and among DDS vendors. The Committee has also held hearings on “ensuring fair and equal access to regional center services for Autism Spectrum Disorders,” among other topics (42). Collectively, these and other advocacy efforts have likely contributed to the deconcentration of autism diagnoses from children of high SES, White parents, in turn, broadening access to the services that an autism diagnosis unlocks.

 

Hispanic Students and Private Placement

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

Where the district’s placement offer of a free appropriate public education (FAPE) in the least restrictive environment (LRE) is inappropriate a private school placement may be necessary and the district has to pay.

Ashley Okwuosa and Sharon Lurye of The Teacher Project at USA Today:

Nationally, Hispanic students are consistently the most underrepresented group in terms of accessing private placement. In 2019, the Teacher Project surveyed all 50 states for data on students placed at private special education schools at the public’s expense. Of the 15 states where demographic data was available, Hispanic students were significantly underrepresented in 13 of them. In Texas and California, Hispanic students make up half of the special education population but 29% and 36% of students in private placement, respectively. In Massachusetts, Hispanic students comprise nearly a quarter of the special education population but only 14% of those receiving private placement.

In New Jersey, where the number of Hispanic students has grown rapidly in many communities, the statewide gap is smaller, but that masks stark disparities at the county level. In Camden, half of special education students are Hispanic compared with 15% of those receiving private placement. In Ocean County, one-fifth of special education students are Hispanic compared with only 2% in private placement.

Two main factors cause the gaps: Parents with limited English struggle to navigate their way through a bureaucratic, technical and jargon-laden process – if they even hear about private placement. And very few private schools that serve children with special needs have language support programs.

“Families have to choose between English-as-a-second-language services and special education services,” said Jennifer Rosen Valverde, a professor at Rutgers Law School who focuses on special education.

This became even clearer as the COVID-19 pandemic upended education. Remote learning made it next to impossible for many parents to find special education and language support for their children.

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 The Journal of Autism and Developmental Disorders, Lucy A. Bilaver, Sarah A. Sobotka & David S. Mandell have an article titled "Understanding Racial and Ethnic Disparities in Autism-Related Service Use Among Medicaid-Enrolled Children."

Significant racial and ethnic disparities in autism-related services were found among Medicaid enrolled children with ASD. Black, Asian, and Native American/Pacific Islanders received fewer outpatient, autism-related services compared with white children, but there was no disparity among Latinx children. There were no disparities in school-based services. To our surprise black and Asian children received more services than white children in the school setting. Disparities in case management/care coordination services were largest; there was a significant 8.3, 7.3, and 1.9 percentage point disparity for Asian, Latinx, and black children respectively. In stratified analyses, we found a disparity for black children (6 percentage points) in outpatient services for children living in large metro areas.

...

When compared with white children, black children with ASD were 5.3% less likely to use outpatient autism related services but 5.6% more likely to use school-based services, a result driven by children living in large metro areas. One hypothesis to explain this substitution effect would be easier access and availability of school-based services compared with outpatient services in large metro counties with large concentrations of minority children. Although obtaining an individualized education plan to receive school-based services can be challenging for families (MacLeod et al. 2017; Salembier and Furney 1997), at least the process typically occurs in the building where a child attends school and requires no additional family travel. A second hypothesis is that the school context, including racial composition and fiscal resources, are associated with the propensity to place minority children in special education and possibly bill Medicaid for school-based services. There is a significant body of literature that has documented a higher likelihood of special education placement among minority children (National Research Council 2002; Zhang et al. 2014); however, recent studies have challenged this finding after more fully controlling for socioeconomic correlates, school context, and type of disability (Fish 2019; Morgan et al. 2017; Schussler et al. 2016). It is possible that the pattern of greater service use among black children stems in part from this legacy as well as variation in school-based Medicaid billing practices. Future research should examine the contribution of school context including racial composition and fiscal resources on disparities.

Progress on Screening

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

Paul S. Carbone and colleagues have an article at Pediatrics titled "Primary Care Autism Screening and Later Autism Diagnosis"

From the abstract:

Of 36 233 toddlers, 73% were screened and 1.4% were later diagnosed with ASD. Hispanic children were less likely to be screened (adjusted prevalence ratio [APR]: 0.95, 95% confidence interval [CI]: 0.92–0.98), and family physicians were less likely to screen (APR: 0.12, 95% CI: 0.09–0.15). Compared with unscreened children, screen-positive children were more likely to be diagnosed with ASD (APR: 10.3, 95% CI: 7.6–14.1) and were diagnosed younger (38.5 vs 48.5 months, P < .001). The M-CHAT’s sensitivity for ASD diagnosis was 33.1%, and the positive predictive value was 17.8%. Providers routinely omitted the M-CHAT follow-up interview and had uneven referral patterns.

From the article:

Previous estimates of ASD screening have varied significantly (between 17% and 81%) and relied on physician report of “usual practice.”6,16 Our study, along with 2 recent studies, adds to understanding of ASD screening because estimates are based on data from actual visits rather than physician recall and indicates that, although ASD screening is far from universal, a high proportion of children are screened at least once.10,11
With our study, we provide important insight into disparities in ASD screening; researchers in previous studies suggested that ASD screening in primary care reduces racial and ethnic disparities in ASD identification and age of diagnosis.17 Hispanic children in our cohort were less likely to be screened compared with non-Hispanic white children, a finding supported by one previous study.11 We also found family physicians rarely administered ASD screening tools. The American Academy of Family Physicians does not recommend universal ASD screening, which may explain differences in screening between pediatricians and family physicians.18 No previous studies have had estimated rates of ASD screening among family physicians, although researchers of one qualitative study of a small group of family physicians found that, rather than screening, participants relied on developmental surveillance to identify children with ASD.19 Given that family physicians provide 16% to 21% of pediatric care, this new finding uncovers an opportunity to further increase ASD screening rates in the United States.20

...
Our results suggest progress toward universal ASD screening in primary care practices. Still, only half of children in our study were screened at both 18- and 24-month visits, suggesting further work to be done to encourage providers to complete screens as recommended, with more efforts to screen Hispanic children. Further advocacy and education are needed to encourage family physicians to screen for ASD. More resources are needed for implementing ASD screening at the practice and health care system level, with particular attention to administering ASD screening tools with fidelity, prompt referral of children who are found to be at-risk, and increasing the availability of ASD diagnostic providers to facilitate prompt ASD evaluations.

One in Fifty-Four

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

Matthew J. Maenner and colleagues have a report at MMWR titled: "Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2016."  The abstract:

Problem/Condition: Autism spectrum disorder (ASD). Period Covered: 2016.

Description of System: The Autism and Developmental Disabilities Monitoring (ADDM) Network is an active surveillance program that provides estimates of the prevalence of ASD among children aged 8 years whose parents or guardians live in 11 ADDM Network sites in the United States (Arizona, Arkansas, Colorado, Georgia, Maryland, Minnesota, Missouri, New Jersey, North Carolina, Tennessee, and Wisconsin). Surveillance is conducted in two phases. The first phase involves review and abstraction of comprehensive evaluations that were completed by medical and educational service providers in the community. In the second phase, experienced clinicians who systematically review all abstracted information determine ASD case status. The case definition is based on ASD criteria described in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition.

Results: For 2016, across all 11 sites, ASD prevalence was 18.5 per 1,000 (one in 54) children aged 8 years, and ASD was 4.3 times as prevalent among boys as among girls. ASD prevalence varied by site, ranging from 13.1 (Colorado) to 31.4 (New Jersey). Prevalence estimates were approximately identical for non-Hispanic white (white), non-Hispanic black (black), and Asian/Pacific Islander children (18.5, 18.3, and 17.9, respectively) but lower for Hispanic children (15.4). Among children with ASD for whom data on intellectual or cognitive functioning were available, 33% were classified as having intellectual disability (intelligence quotient [IQ] ≤70); this percentage was higher among girls than boys (40% versus 32%) and among black and Hispanic than white children (47%, 36%, and 27%, respectively). Black children with ASD were less likely to have a first evaluation by age 36 months than were white children with ASD (40% versus 45%). The overall median age at earliest known ASD diagnosis (51 months) was similar by sex and racial and ethnic groups; however, black children with IQ ≤70 had a later median age at ASD diagnosis than white children with IQ ≤70 (48 months versus 42 months).

Interpretation: The prevalence of ASD varied considerably across sites and was higher than previous estimates since 2014. Although no overall difference in ASD prevalence between black and white children aged 8 years was observed, the disparities for black children persisted in early evaluation and diagnosis of ASD. Hispanic children also continue to be identified as having ASD less frequently than white or black children.

Public Health Action: These findings highlight the variability in the evaluation and detection of ASD across communities and between sociodemographic groups. Continued efforts are needed for early and equitable identification of ASD and timely enrollment in services.

Prevalence and Inequality in California

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. 

A release from the University of Colorado at Boulder:

Wealthy, white California counties--once considered the nation's hotbeds for autism spectrum disorder (ASD)--have seen prevalence flatten or fall in the last two decades, while rates among poor whites and minorities keep ticking up, new CU Boulder research has found.

The study, published March 19 in the Journal of Autism and Developmental Disorders, raises the possibility that parents in wealthier counties are successfully reducing environmental exposures that may contribute to autism risk, or taking other steps to curb its severity early on.

While that's a hopeful possibility, the authors say, the findings also illuminate a disturbing economic and racial divide.

"While autism was once considered a condition that occurs mainly among whites of high socioeconomic status, these data suggest that the brunt of severe autism is now increasingly being borne by low-income families and ethnic minorities," said lead author Cynthia Nevison, PhD, an atmospheric research scientist with the Institute of Arctic and Alpine Research, who also studies environmental health.

Adds co-author Willam Parker, PhD, an autism researcher at Duke University Medical Center: "There is potentially good news here, but, unfortunately, not everyone is a beneficiary of this good news."

For the study, the researchers analyzed 20 years' worth of autism caseload counts from the California Department of Developmental Services, comparing data from 36 of the state's most populous counties.

Between birth years 1993 and 2000, autism prevalence increased steadily among all racial groups.

But around 2000, the trajectories started to diverge: Prevalence among whites in wealthy counties like Santa Clara (home to Silicon Valley) and from Monterey to the San Francisco coast started to decline.

In middle-income counties like Sacramento, Los Angeles and San Diego, prevalence among whites continued to increase, but at a slower rate.

Meanwhile, in lower income areas like Riverside and the South Central Valley, rates among whites climbed steeply.

By birth year 2013, prevalence among whites in the lowest income counties was at least double that of whites in the highest income counties. Generally speaking, the higher the county income, the lower the rate of autism among white children.

Notably, Santa Clara County had a surge in the rate of autism spectrum disorders between 1993 and 2000, with rates doubling among whites and Asians in just seven years. As Nevison and Parker recall in the new paper, that surge gave rise to controversial theories that men with poor social skills but strong math and engineering skills were increasingly able to find partners in the tech-age and were fathering "genetically autistic" children.

"Our data contradict that argument," said Nevison, noting that today Santa Clara County has one of the lowest prevalence rates of severe autism in the state among whites. Growth in prevalence among Asians has also flattened in the county.

Meanwhile, the study found, incidence among blacks has increased rapidly across California, marking the highest rates among any ethnic or racial group at 1.8%. That finding is in line with previous research finding that autism prevalence is rising rapidly nationwide among African Americans.

Some health experts have attributed such increases among minorities to better screening and diagnosis, but the authors believe environmental factors also play a role.

Just which factors may be at play is unclear, but Parker notes that many of the same things that fuel disease-causing inflammation--toxins, unhealthy food and emotional stress--are also associated with autism. And lower-income and minority families tend to have a harder time accessing or affording healthier lifestyle options.

Established risk factors associated with autism include: advanced parental age, challenges to the immune system during pregnancy, genetic mutations, premature birth and being a twin or multiple.

The authors cannot say if their findings would translate to other counties around the country or to milder forms of autism. They also cannot rule out that wealthy families are opting out of state services in favor of private services. More research is underway.
With autism affecting one in 59 children nationwide in 2018--a rate expected to be revised by the Centers for Disease Control later this spring--they hope the paper will encourage parents and policymakers to look beyond genetics and better outreach and diagnosis.

"There is an urgent need to understand what wealthy California parents are doing or have access to that may be lowering their children's risk," they conclude.

Race, Ethnicity, and Diagnosis Disparities

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

A release from Rutgers:

One-fourth of children under age 8 with autism spectrum disorder — most of them black or Hispanic — are not being diagnosed, which is critical for improving quality of life.

The findings, published in the journal Autism Research, show that despite growing awareness about autism, it is still under-diagnosed, particularly in black and Hispanic people, said study co-author Walter Zahorodny, an associate professor at Rutgers New Jersey Medical School and director of the New Jersey Autism Study, which contributed to the research.

Researchers analyzed the education and medical records of 266,000 children who were 8 years old in 2014, seeking to determine how many of those who showed symptoms of the disorder were not clinically diagnosed or receiving services.

Of the nearly 4,500 children identified, 25 percent were not diagnosed. Most were black or Hispanic males with deficits in mental abilities, social skills and activities of daily living who were not considered disabled.

“There may be various reasons for the disparity, from communication or cultural barriers between minority parents and physicians to anxiety about the complicated diagnostic process and fear of stigma,” Zahorodny said, “Also, many parents whose children are diagnosed later often attribute their first concerns to a behavioral or medical issue rather than a developmental problem.”

Screening all toddlers, preschool and school-age children for autism could help reduce the disparities in diagnosis, Zahorodny said. In addition, clinicians can overcome communication barriers by using pictures and/or employing patient navigators to help families understand the diagnosis process, test results and treatment recommendations.
States can help improve access to care by requiring insurance companies to cover early intervention services when a child is first determined to be at risk rather than waiting for a diagnosis, he said.

The research was conducted through the Autism and Developmental Disabilities Monitoring Network, a surveillance program funded by the U.S. Centers for Disease Control and Prevention that tracks the prevalence of the developmental disorder in 11 states: Arizona, Arkansas, Colorado, Georgia, Maryland, Minnesota, Missouri, New Jersey, North Carolina, Tennessee and Wisconsin.

From the article -- on insurance and medical diagnosis:

As previously mentioned, one possible benefit of receiving a clinical diagnosis is to facilitate access to appropriate services. Over the past decade, many states have enacted
laws that mandate insurance companies to reimburse evidence-based treatments for ASD; including but not limited to behavioral therapy (e.g., applied behavior analysis),
occupational therapy, physical therapy, speech therapy, social skills training, and a combination of these [Barry et al., 2017; Dawson & Burner, 2011; Douglas,
Benevides, & Carretta, 2017; Kasari, 2015; Zwaigenbaum et al., 2015]. However, justification for the medical necessity of therapies is most often needed before insurers will approve and reimburse service requests. Although comprehensive service use and insurance status are not surveyed in ADDM, a clinical diagnosis of ASD may support such justification and help reduce the financial burden of raising a child with special needs by decreasing out-of-pocket premiums. Recognizing and diagnosing children with ASD symptoms may, therefore, facilitate access to appropriate services and reduce financial strain.

Prevalence Among African Americans and Hispanics

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

A release from the University of Colorado at Boulder:

Autism rates among racial minorities in the United States have increased by double digits in recent years, with black rates now exceeding those of whites in most states and Hispanic rates growing faster than any other group, according to new University of Colorado Boulder research.

The study, published this month in the Journal of Autism and Developmental Disorders, also found that prevalence of autism among white youth is ticking up again, after flattening in the mid-2000s.

While some of the increase is due to more awareness and greater detection of the disorder among minority populations, other environmental factors are likely at play, the authors conclude.

"We found that rates among blacks and Hispanics are not only catching up to those of whites—which have historically been higher—but surpassing them," said lead author Cynthia Nevison, an atmospheric research scientist with the Institute of Arctic and Alpine Research. "These results suggest that additional factors beyond just catch-up may be involved."

For the study, Nevison teamed up with co-author Walter Zahorodny, an autism researcher and associate professor of pediatrics at Rutgers New Jersey Medical School, to analyze the most recent data available from the Individuals with Disabilities Education Act (IDEA) and the Autism and Developmental Disabilities Monitoring (ADDM) Network.

IDEA tracks prevalence, including information on race, among 3-to-5-year-olds across all 50 states annually. ADDM tracks prevalence among 8-year-olds in 11 states every two years.

The new study found that between birth year 2007 and 2013, autism rates among Hispanics age 3-5 rose 73%, while rates among blacks that age rose 44% and rates among whites rose 25%.

In 30 states, prevalence among blacks was higher than among whites by 2012.

In states with "high prevalence," 1 in 79 whites, 1 in 68 blacks and 1 in 83 Hispanics born in 2013 have been diagnosed with autism by age 3-5.

Other states like Colorado fell in a "low-prevalence" category, but the authors cautioned that differences between states likely reflect differences in how well cases are reported by age 3-5. They also said the real prevalence is substantially higher, as many children are not diagnosed until later in life.

"There is no doubt that autism prevalence has increased significantly over the past 10 to 20 years, and based on what we have seen from this larger, more recent dataset it will continue to increase among all race and ethnicity groups in the coming years," said Zahorodny.

In 2018, the Centers for Disease Control reported that about 1 in 59 children of all races have been diagnosed with autism and that rates had risen 15 percent overall from the previous two year period, largely due to better outreach and diagnosis among historically underdiagnosed minority populations.

"Our data contradict the assertion that these increases are mainly due to better awareness among minority children," said Zahorodny. "If the minority rates are exceeding the white rates that implies some difference in risk factor, either greater exposure to something in the environment or another trigger."

Established risk factors associated with autism include advanced parental age, challenges to the immune system during pregnancy, genetic mutations, premature birth and being a twin or multiple.

The authors said that, based on current research, they cannot pinpoint what other environmental exposures might be factoring into the increases in autism. But they would like to see more research done in the field.