Ritu Goel at STAT:
I am a child and adolescent psychiatrist. I am also a South Asian woman and a mother. For years, I worked with families navigating complex childhood diagnoses at institutions like Johns Hopkins, Kennedy Krieger, and Kaiser Permanente. The pattern I saw in the clinic is the same one the research now confirms: South Asian children are diagnosed with developmental disabilities later than white peers. (On average, minority children are diagnosed roughly a year to a year and a half later than their white peers.) Their families access fewer services. And the primary barrier is not language, insurance, or geography. It is stigma.
In South Asian households, a child’s disability triggers a specific kind of family crisis that most American clinicians are not trained to recognize. The concept of izzat, or family honor, means a diagnosis does not stay with the child. It attaches to the entire family. Grandparents deny it. Aunties suggest prayers or herbal remedies instead of therapy. The question that should be simple (“How do we get our child the right help?”) becomes a painful negotiation with shame.
Then there is the karma narrative. In many South Asian spiritual frameworks, disability is framed as punishment for past wrongdoing and is internalized as personal moral failure. Mothers carry the blame: her diet during pregnancy, her stress, her genetics, and her parenting. Research on South Asian and broader Asian caregivers documents the result: emotional exhaustion that does not respond to rest, chronic physical symptoms, and a shrinking social world as families withdraw to avoid judgment.
At NBC, Victoria Namkung reports on Princeton University undergraduate Jennifer Lee:These experiences led Lee to found the Asian Americans with Disabilities Initiative, or AADI, in July of 2021 with a goal of amplifying disabled Asian American voices and creating space to explore the intersectional identities of being both disabled and Asian American. The youth-led nonprofit group wants to provide the next generation of disabled Asian American leaders with accessible resources to help combat anti-Asian racism and ableism.
Last week, the advocacy organization published the Asian Americans with Disabilities Resource Guide featuring first-person testimonials, comprehensive peer-reviewed research and sections such as access to disability services, mental illness and intersectionality. The nearly 80-page online guide is designed for Asian Americans with disabilities, as well as their caretakers, family members, allies, businesses and organizations.
In The Politics of Autism, I write about the experiences of different ethnic and racial groups.
A release from UC Davis:
Whites with autism spectrum disorder (ASD) in California receive more state funding than Hispanics, African Americans, Asians and others, new research from UC Davis Health System has found. The study also showed that state spending on ASD increases dramatically with age.
Previous evaluations of the state's investment in ASD services have not included adults, a major oversight, according to lead author Paul Leigh, professor of public health sciences and researcher with the Center for Healthcare Policy and Research at UC Davis.
“There are more children diagnosed today with autism than any time in history,” Leigh said, referring to data from the U.S. Centers for Disease Control and Prevention estimating that ASD affects 1 in 68 children. “Our findings can help stakeholders, including legislators and health insurance administrators, accurately estimate the costs of autism services and plan their budgets to meet the lifelong need for those services.”
ASD is a complex neurodevelopmental disorder present in early childhood that impairs communication, social skills and the ability to understand abstractions. In California, services for people with ASD are funded by the Department of Developmental Services (DDS) through 21 regional centers. Up to age 22, people with developmental disabilities can also receive some support — such as speech and occupational therapy — through public schools.
In conducting the study, published in PLOS ONE, Leigh and his team used 2012-13 data on more than 42,000 DDS clients with ASD, including those with the additional diagnosis of intellectual disability.
These bar charts highlight data presented in the study “Spending by California’s Department of Developmental Services for Persons with Autism across Demographic and Expenditure Categories,” which is published in PLOS ONE and authored by Paul Leigh, professor of public health sciences. Click here to view larger versions of the charts.
The researchers found spending differences based on race and ethnicity. Compared to whites aged 3 to 17, average per-person spending was close to $2,000 per person lower for African Americans and Hispanics, with the least spending on African Americans. Differences between whites and other racial/ethnic groups, including Asians, for this age range were small.
Spending differences based on race and ethnicity were more profound for adults with ASD. Compared to whites over the age of 18, average per-person expenditures were nearly $13,000 lower for Hispanics, $8,000 lower for Asians, $6,000 lower for others (including nonresponders, Native Americans and Pacific Islanders) and $4,000 lower for African Americans.
“The reasons for these disparities deserve investigation,” Leigh said. “It could be related to the locations of DDS regional offices around the state and the variable costs and availability of services in those areas. But average per-person spending on autism should not differ this much. There are no distinctions in the services needed by people with autism based on race or ethnicity.”
There were also spending differences based on age. People age 18 and over receive approximately two and one-half times more funding as younger people with ASD, with the widest gap between the youngest and oldest age groups. Average spending for each DDS client aged 3 to 6 was about $12,000, while average spending on each adult with ASD aged 65 and over was close to $50,000.
“As children with autism grow up and become adults and no longer receive public school-based assistance, their services transition to expensive independent living support and more of the cost burden shifts to the state,” Leigh said.
“We hope our data can help justify earlier, expanded and equitable spending on younger children with autism," Leigh added. "There is a great return on investment in high-quality early intervention services, which consistently have been found to reduce the disability associated with autism and to support the greater independence and integration in society as a whole of adults with autism.”
Leigh’s co-authors were Scott Grosse of the U.S. Centers for Disease Control and Prevention, and Diana Cassady, Joy Melnikow and Irva Hertz-Picciotto of UC Davis. Their work was funded by Autism Speaks and the National Institute for Occupational Safety and Health (grant U54OH007550).
A copy of the study, titled “Spending by California’s Department of Developmental Services for Persons with Autism across Demographic and Expenditure Categories,” is available online.
