Opinion: In many South Asian American families, a child’s autism diagnosis is a secret

OpinionFirst Opinion In many South Asian American families, a child’s autism diagnosis is a secret Cultural norms and health system failures make it difficult for kids to access the care they need Manage alerts for this article Email this article Share this article By Ritu GoelJune 15, 2026 Goel is a double board-certified child, adolescent, and adult psychiatrist and founder of MindClaire PC. The CDC’s latest data show autism prevalence is 1 in 31 children in the United States. That is 16% higher than the previous estimate in 2020. It is the kind of number that should change how health systems allocate resources, how pediatricians screen, and how schools plan. But there is a population this number barely touches: South Asian American families, where an autism diagnosis is still, in many homes, a secret.Advertisement I know this because I have lived on both sides of it. 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.Advertisement I recently gave a talk to a group of South Asian parents through Jeena, a community organization in Southern California. What struck me was the relief on their faces when someone finally named what they had been carrying. At my clinic, one mother told me she had never said her child’s diagnosis out loud to anyone outside her immediate household. Her son was 7 years old. That’s seven years of silence, of managing information, avoiding family gatherings, performing normalcy for relatives while quietly falling apart. During those seven years, her child did not receive the full range of services he was entitled to because accessing them would have required disclosure. This is both a cultural problem and a health system failure. Autism screening protocols, early intervention pipelines, and school-based services are all built on the assumption that once a family receives a diagnosis, they will act on it. For many South Asian families, that assumption is wrong. The diagnosis marks the start of a different, more challenging problem: whether it is safe to tell anyone. Here is what needs to change: First, pediatric screening tools need to account for cultural barriers to disclosure, not only developmental milestones. A parent who minimizes symptoms during a well-child visit may not be in denial. They may be protecting their family’s standing in a community where disability is equated with shame. Clinicians need to be trained to recognize and respond to this, not with cultural sensitivity modules that treat izzat and karma as exotic footnotes, but with practical clinical strategies for building trust across that gap. Second, early intervention programs need community-based navigators who share the cultural and linguistic background of the families they serve. South Asian parents are unlikely to disclose to a system. They will disclose to a person they trust. Embedding culturally matched navigators in developmental pediatrics clinics and regional centers would directly address the access gap that the research continues to document.Advertisement Third, we need to stop treating caregiver depletion as a personal wellness problem. In South Asian households, mothers are socialized to a model of infinite sacrifice, making it feel like betrayal to acknowledge their own needs. Research shows that caregiver self-efficacy is one of the strongest predictors of child outcomes. When we fail to support the parent, we fail the child. That means funding culturally specific respite care, caregiver mental health services, and parent support groups rather than generic ones. The national conversation about autism has rightly expanded in recent years. But it still assumes that the hardest part is getting a diagnosis. For South Asian families, the hardest part is deciding whether it is safe to act on it. The mother I met at my clinic did not need another awareness campaign. She needed someone to make it safe to say her child’s name and his diagnosis in the same sentence without shame. Ritu Goel, M.D., is a double board-certified child, adolescent, and adult psychiatrist and founder of MindClaire PC in Long Beach, Calif. Letter to the editor Have an opinion on this essay? 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