Opinion: Searching for the cause of autism diverts attention from where it’s needed

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The Centers for Disease Control and Prevention released new data this week showing that 1 in 31 children in the U.S. is autistic. As researchers and physicians, we welcome the growing national attention — and federal funding — this condition is receiving.

But we worry the money is being directed toward the wrong question.

For decades, the lion’s share of autism research has focused on one elusive goal: identifying its cause. The idea is tempting — if we could just pinpoint why autism happens, perhaps we could prevent it altogether. But that pursuit has dominated the national research agenda at the expense of something far more urgent: improving the lives of autistic people and their families, here and now.

Autism is a complex, multifactorial condition, rooted largely in genetics. We know this. We’ve known it for years. More cause-oriented studies may slightly deepen our understanding, but they are unlikely to offer groundbreaking new answers. Worse, they come with real costs — diverting funds from work that could improve health outcomes, reduce disparities and enhance quality of life.

Even more troubling is the social message this focus sends. Framing autism as a problem to be solved or a puzzle to crack can stigmatize and marginalize people who are simply different. Autistic individuals already face striking health disparities: They are nearly three times as likely to die prematurely as the general population and live, on average, 16 years fewer. That alone should be a call to action.

Instead of chasing causation, let’s invest in what autistic people and their families say they actually need. Here’s what that looks like.

First, we need to support autistic individuals across the lifespan.

Too often, services end with childhood. The transition to adulthood — college, work, relationships — can feel like falling off a cliff. Many autistic adults struggle to find jobs or live independently, and families are left to fill in the gaps. We need research that informs systems of support throughout adulthood, especially as aging parents face the reality of no longer being able to care for their children.

Second, we need to address serious health disparities.

Autistic individuals are at significantly higher risk for obesity and cardiovascular disease, beginning in childhood. Nearly half of autistic adults in the U.S. have cardiovascular disease. These are preventable conditions — but only if the research agenda focuses on inclusive, proactive health strategies.

Third, we need to support caregivers.

Parents, siblings and family members shoulder an enormous burden, often with little guidance or support. Research should explore how to better equip families with the tools, training and systems they need to care for their loved ones — and themselves.

And finally, we need to make health care work for everyone.

Autistic patients routinely report that health care settings are unwelcoming and hard to navigate. Sensory sensitivities, cognitive challenges and a lack of provider training all create barriers to care. That means missed screenings, unmanaged chronic conditions and avoidable suffering. We can — and must — build a more inclusive system.

It’s time for a new kind of autism research. One that listens to autistic individuals. One that prioritizes health, dignity, and well-being over pathology. And one that accepts that autism isn’t something to be fixed — but that our systems are.

This April, during Autism Acceptance Month, let’s move beyond awareness. Let’s make autism research truly serve the people it’s meant to help.

Emily Hotez, Ph.D., and Alice Kuo, MD, Ph.D., are autism researchers at UCLA. Hotez is an Assistant Professor, and Kuo is a Professor and Chief of Medicine-Pediatrics and Preventive Medicine. Kuo is also the incoming Chair of the Autism Subcommittee at the American Academy of Pediatrics.