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.

 

Racial Disparities and Special Education

In The Politics of Autism, I write about the experiences of different ethnic and racial groups.

Christina Samuels at Education Week:

The U.S. Department of Education is proposing a two-year delay of a rule that would require states to take a stricter approach to identifying whether their districts have wide racial or ethnic disparities in special education.

The department is asking for comments on its proposed delay. If there is no change, the rule, which was issued under the Obama administration, is set to go into effect for the 2018-19 school year.

During the two-year delay, the Education Department will consider eliminating the rule entirely.

The Leadership Conference on Civil Rights and many other organizations want to retain the rule:

On behalf of The Leadership Conference on Civil and Human Rights and the 112 undersigned organizations, we write to offer our strong support for the robust enforcement of the Individuals with Disabilities Education Act (IDEA) provisions regarding significant disproportionality in the identification, placement, and discipline of students with disabilities with regard to race and ethnicity.[i] 

... 

As parents, students, and advocates working to eliminate discriminatory practices that undermine equal educational opportunity, we know all too well that students of color are disproportionately misidentified for certain categories of special education, placed in restrictive learning environments at higher rates than their White peers with disabilities (where their outcomes are significantly worse than those of other students), and subjected to punitive discipline practices more often.[ii] We wholeheartedly support the collection of data on significant disproportionality, as it is an essential state obligation as required by the Individuals with Disabilities Education Improvement Act[iii] signed on December 3, 2004, and clarified by the regulations finalized on December 19, 2016.[iv] Moreover, we recognize that these data, once collected, should inform action to address systemic barriers to students’ success.

...

This regulation was a direct response to the February 2013 U.S. Government Accountability Office (GAO) study[vi] showing widespread noncompliance by states with 20 U.S.C. Section 1418(d) of the IDEA requiring states to identify Local Education Agencies (LEAs) with significant disproportionality in areas related to special education: Identification; Restrictive Placement; and Discipline. Most states set thresholds for identifying disproportionate districts so high that no districts ever exceeded them, and, therefore, none were identified. Meanwhile states permitted districts to suspend students of color with disabilities at much higher levels than their White peers. Nationally, for example, in 2011, districts suspended more than one in every four Black students with disabilities, at least once. Rates of disciplinary removal for their disabled White peers were far lower.[vii] The GAO recommended that, “To promote consistency in determining which districts need to provide early intervening services, Education should develop a standard approach for defining significant disproportionality to be used by all states.”

Symptoms and Ethnicity

In The Journal of Autism and Developmental Disorders, Saime Tek and Rebecca J. Landa write:

Little is known about whether early symptom presentation differs in toddlers with ASD from ethnic minority versus non-minority backgrounds. Within a treatment study for toddlers with ASD, we compared 19 minority to 65 Caucasian children and their parents on variables obtained from the Mullen Scales of Early Learning, Autism Diagnostic Observation Schedule, and Communication and Symbolic Behavior Scales Caregiver Questionnaire. The majority of parents were from the upper classes irrespective of ethnic membership. Minority children had lower scores in language, communication, and gross motor than non-minority children. Findings indicate that subtle communication delays may be undetected or presumed unremarkable by parents of minority toddlers, and that more significant delays are needed to prompt the search for intervention services.

Daily Rx  reports on the study:

Even when controlling for the socioeconomic status of the kids, Landa'steam found a significant difference between the development of the minority children and the non-minority children.

"We found the toddlers in the minority group were significantly further behind than the non-minority group in development of language and motor skills and showed more severe autism symptoms in their communication abilities," Landa said.

"It's really troubling when we look at these data alongside diagnosis statistics because they suggest that children in need of early detection and intervention are not getting it," she added.

Landa's previous research has shown that children can be diagnosed with autism as early as 14 months old, and early detection is essential for early intervention.
It appears that minority children may not be receiving a diagnosis of autism early enough to receive the same intervention that white children are receiving after an early diagnosis.

Landa said the disparity between when minority children are diagnosed and when white children are diagnosed could stem from cultural differences.

Different communities may have divergent perceptions of typical versus atypical development in children,

Further, some cultures may have a greater stigma surrounding disabilities and slower development, so Landa suggests that education and awareness could go a long way in these communities.

Diagnosis of African-American Children

A release from Florida State University (click here for an audio version)

The rate of diagnosis for autism spectrum disorders (ASD) is the same among all racial groups — one in 110, according to current estimates. However, a study by a Florida State University researcher has found that African-American children tend to be diagnosed later than white children, which results in a longer and more intensive intervention.

The reasons for later diagnoses include a lack of access to quality, affordable, culturally competent health care, according to Martell Teasley, an associate professor in Florida State's College of Social Work who has conducted a comprehensive review of researchliterature on autism and African-American children. In addition, the stigma attached to mental health conditions within the black community contribute to misdiagnoses of autism, and underuse of available treatment services.

"There are no subjective criteria for diagnosing autism. Only brain scans can truly provide appropriate diagnoses, because we are dealing with biological and chemical imbalances in the brain,"* Teasley said. "Not every child is going to have access to this kind of medical evaluation, particularly those who are indigent and don't have health care funding."

Teasley examined ASD diagnosis and treatment strategies, and their effect on African-American families, in "Autism and the African-American Community," a paper published in a special issue of the journal Social Work in Public Health (Vol. 26, Issue 4, 2011) that dealt with health-care policy issues in the black community related to the human genome. Teasley co-wrote the paper with Ruby Gourdine, a professor of social work at Howard University in Washington, D.C., and Tiffany Baffour, an associate professor of social work at Winston-Salem State University in North Carolina.

*This statement is inaccurate.  Researchers are working to develop brain scans, but they are not  yet part of standard clinical practice.

Harlem Charter School

Anna Phillips writes at The New York Times:

For the founders of a new charter school opening in Harlem next September, the recruitment process is unlike almost any other.

The Neighborhood Charter School of Harlem, which is modeling itself on the Department of Education’s popular program for high-functioning autistic students, called ASD Nest, has given itself the ambitious task of seeking out families who may not know their children have the disorder.

The parents might suspect their not-yet-kindergarten-age children behave differently, and doctors and daycare directors might also have their theories, but a firm diagnosis could be years away.

Through a combination of visits to daycare centers, conversations with health clinics, and relationships with community groups, Patricia Soussloff and Ruth Meyer, the school’s founders, are recruiting families and providing free evaluations by the Young Adult Institute, a service and resources organization for people with developmental and learning disabilities.

The founders are targeting low-income, minority families, who are often the least likely to seek out a diagnosis for their children. According to Ms. Meyer, the average age at which a black or Latino child is diagnosed with autism is eight; it is closer to four or five for white children.

Disparities in California

In the second part of his autism series in The Los Angeles Times, Alan Zarembo shows that educated parents get more services for their kids:

For autistic children 3 to 6 — a critical period for treating the disorder — the state Department of Developmental Services last year spent an average of $11,723 per child on whites, compared with $11,063 on Asians, $7,634 on Latinos and $6,593 on blacks.

Data from public schools, though limited, shows that whites are more likely to receive basic services such as occupational therapy to help with coordination and motor skills.

The divide is even starker when it comes to the most coveted service — a behavioral aide from a private company to accompany a child throughout each school day, at a cost that often reaches $60,000 a year.

In the state's largest school district, Los Angeles Unified, white elementary school students on the city's affluent Westside have such aides at more than 10 times the rate of Latinos on the Eastside.

It might be tempting to blame such disparities on prejudice, but the explanation is more complicated.

“Part of what you're seeing here is the more educated and sophisticated you are, the louder you scream and the more you ask for,” said Soryl Markowitz, an autism specialist at the Westside Regional Center, which arranges state-funded services in West Los Angeles for people with developmental disabilities.

...

In California last year, autism accounted for one tenth of special education enrollment but one third of the disputes between schools and parents on record with the state.

Carmen Carley, a professional advocate for families seeking public services, said parents who present themselves as formidable opponents fare best.

“Wear a fake diamond ring,” she tells mothers who don't have a real one. “Make them think you're ready to fight. Don't show them you're weak. Don't show them you're tired.”

...

Though all regional centers are supposed to follow the same criteria, average spending per child varies widely from place to place and race to race, according to data obtained by The Times under the California Public Records Act.

Last year, the system served 16,367 autistic children between the critical ages of 3 and 6, spending an average of $9,751 per case statewide. But spending ranged from an average of $1,991 per child at the regional center in South Los Angeles to $18,356 at the one in Orange County.

At 14 of the 21 centers, average spending on white children exceeded that for both blacks and Latinos.

...

At the Frank D. Lanterman Regional Center, which serves a swath of Los Angeles County stretching from Hollywood to Pasadena, spending on white youngsters with autism averaged $12,794 per child last year — compared with $9,449 for Asians, $5,094 for blacks and $4,652 for Latinos.

Diane Anand, the executive director, said many minority children enrolled in the system receive few or no services because their parents can't participate as required in orientations or therapy sessions.

Anand faulted state officials for failing to research the causes of the disparities.

“I don't know what you do about some of this,” she said. “This is an issue that has bedeviled our service system for years and years.”

Minorities and Special Ed

Beth Winegarner reports at The San Francisco Examiner about racial disparities in special-ed classrooms:

Higher-than-expected numbers of black students also show up among those with learning disabilities, along with Hispanic students, who also cluster in the “speech and language impairment” category.

This disproportionality is not new. In 1971, black students fought the SFUSD’s use of racially biased IQ tests to sequester them in classes for “educable mentally retarded” students. The tests were banned, but black and Hispanic students still wind up in special-education classrooms at higher rates than their white or Asian peers.

Statewide, the SFUSD was one of 61 of the state’s 838 school districts with disproportionate numbers of black and Hispanic students in special education in the 2008-09 school year, and one of 42 that violated state special-education policies, according to a report from the California Department of Education.

“There’s institutional racism there,” said Katy Franklin, a member of the SFUSD Community Advisory Committee for Special Education. “When a white kid throws a chair they think, ‘Autistic.’ When a black kid does this, they’re labeled emotionally disturbed. I don’t think it’s deliberate; it’s just what happens.”

The problem may not be just one of labeling. Colin Ong-Dean, Alan J. Daly and Vicki Park have an article titled "Privileged Advocates" in the journal Policy Futures in Education. From the abstract:

Since the establishment of educational rights for children with disabilities in the 1970s, special education in the US has included a growing share of students and has constituted an ever-growing share of education budgets. Previous research has focused on the disproportionate assignment to special education of low-income and minority students, concluding that special education mainly reproduces social disadvantages. This article argues that privileged parents - by virtue of their ability to navigate complex legal and scientific practices and discourses that are seen as guarantees of fairness and neutrality in special education - are able to secure advantageous resources for their children through special education. Through analysis of the distribution and content of 'due process' hearing requests in the California special education system, this article shows how advocacy in this part of the system depends on parents' cultural and economic capital. Specifically, reimbursement claims in due process hearings show how having economic capital can be used to leverage public education resources, while parents' testimony in hearings shows the importance of having cultural capital. In concluding, the emphasis on parental involvement in both regular and special education is discussed and alternatives to the individualized system of rights in special education are considered.

Diagnosis Disparities

In Psychiatric Services (subscription required), David Mandell and colleagues look at autism diagnoses among children on Medicaid. Here is the abstract:

This study examined child- and county-level factors associated with age of diagnosis of autism among Medicaid-enrolled children and the change in age of diagnosis over time. METHODS: National Medicaid claims from 2002 to 2004 were used to identify age of diagnosis and characteristics of children younger than ten years old with a diagnosis of autism (ICD-9 codes 299, 299.0x, or 299.8x). These data were linked to county-level education and health care variables. Linear regression with random effects for state and county was used to examine associations between these variables and age of diagnosis. RESULTS: A total of 28,722 Medicaid-enrolled children newly diagnosed with an autism spectrum disorder were identified. Their average age of diagnosis was 64.9 months. Adjusted average age of diagnosis dropped 5.0 months for autistic disorder and 1.8 months for other spectrum disorders during the study period. Asian children were diagnosed earlier than children in other racial or ethnic groups, although these differences were much more pronounced for other spectrum disorders than for autistic disorder. Children eligible for Medicaid through the poverty category were diagnosed earlier, on average, than children who were eligible through disability, foster care, or other reasons, although this difference decreased over time. Children in large urban or rural counties were diagnosed later than children in small urban or suburban counties. CONCLUSIONS: Findings showed that diagnosis of autism occurs much later than it should among Medicaid-enrolled children, although timeliness is improving over time. Analyses suggest that most of the observed variation is accounted for by child-level variables, rather than county-level resources or state policies.

In an earlier study, Mandell and colleagues found racial disparities:

This study estimated differences by ethnicity in the diagnoses assigned prior to the diagnosis of autism. In this sample of 406 Medicaid-eligible children, African-Americans were 2.6 times less likely than white children to receive an autism diagnosis on their first specialty care visit. Among children who did not receive an autism diagnosis on their first visit, ADHD was the most common diagnosis. African-American children were 5.1 times more likely than white children to receive a diagnosis of adjustment disorder than of ADHD, and 2.4 times more likely to receive a diagnosis of conduct disorder than of ADHD. Differences in diagnostic patterns by ethnicity suggest possible variations in parents’ descriptions of symptoms, clinician interpretations and expectations, or symptom presentation.

Race, Autism, and IDEA

The New Haven Register reports that a Connecticut school district is facing a loss of funds because of the racial composition of its special ed students:

Amity Superintendent of Schools John Brady said he is frustrated and shocked. His dilemma began last year when the district — which serves Bethany, Orange and Woodbridge — received a letter from the state Department of Education. The state told Amity it has too many white students who are diagnosed as autistic when compared to other racial subgroups. Amity last year had 38 white autistic students, one Asian and one black.

Amity and Vernon are the only two school systems in the state and among only a handful nationwide to have a “significant disproportionate” amount of white autistic students, state officials said.

Such a classification requires the district to divert 15 percent of its Individual with Disabilities Education Act, or IDEA, federal funds, or $67,000 in Amity’s case this year, toward programs designed to reduce those numbers.
...

The Amity district has two middle schools and a high school. Autism is usually diagnosed early in a child’s life, long before middle and high school.

Brady said Amity has a 90 percent white student population so it makes sense a majority of their students with autism would be white.

“The state doesn’t look at extenuating circumstances,” Brady said. “We were put on notice, but (we) told them this cannot be solved. Someone wants us to magically reduce the number of Caucasians at Amity with autism. We can’t do that.”

More here on federal regulations regarding disproportionality.