Rethinking health care for neurodivergent individuals

Health care for neurodivergent individuals has long been fraught with challenges, from delayed diagnoses to fragmented systems of care.

The burden often falls disproportionately on families, especially caregivers, who navigate waiting lists, insurance struggles, and limited resources. But as awareness of neurodivergence grows, so does the opportunity to rethink how health care is delivered, taught, and financed.

With innovative tools and a shift toward comprehensive, patient-centered care, organizations like the Institute for Exceptional Care (IEC) are driving systemic change. As Dr. Mai Pham, founder of IEC, explains, the goal is to create a health care system that works for everyone, not just those who fit well into its traditional framework.

A personal mission becomes a systemic solution

For Pham, the journey to reimagine health care began at home. “My second, Alex, is 22 and autistic,” she says. “Our family’s experience with their mental health crisis in high school led to my questioning and exploration of how we failed them and how the health care system failed us.”

Despite her position as a national health care leader, Pham found herself unprepared for the realities of navigating a system ill-equipped to serve families like hers. “I realized that families without our resources and health care connections would face even worse challenges,” she says.

This realization prompted Pham to launch IEC, which focuses on preparing clinicians to work with individuals with intellectual and developmental disabilities (IDD), designing systems to meet the diverse needs of patients, and finding the best ways to for financing these services. “We need to balance professional expertise with the wisdom of the lived experiences of patients and caregivers,” Pham points out. “Health care should aim at comprehensive well-being, not just the absence of disease.”

Caretaker’s Burden

Gaps in the health care system place an incredible burden on caregivers, often mothers, who are forced to become full-time coordinators of their child’s care. Robin McIntosh, CEO of Avela Health, shares her personal experience: “Many caregivers, myself included, quit their jobs to manage the overwhelming coordination required to access quality healthcare. From navigating waiting lists to driving to long-distance meetings, it’s an exhausting journey.”

Complicating the issue is the lack of different care options. Most families are introduced to Applied Behavior Analysis (ABA), which may not be appropriate for every child. “This overreliance on caregivers and the limited range of services makes an already challenging journey even more daunting,” notes McIntosh.

Building a culture of inclusion

For meaningful change, health care systems must embrace inclusivity at every level. IEC is leading the charge by building coalitions that bring together healthcare leaders and community members to co-create solutions.

“Our healthcare partners tell us the process changes them,” says Pham. “This creates a new appreciation for the value of community input and results in better solutions that are more likely to be effective. It also takes the pressure off healthcare leaders to get all the answers.”

An example of this collaborative approach is the Always Uniquely Me app, developed by IEC in a project on Long Island. The app allows individuals with IDD or their caregivers to upload personal information, such as communication preferences, anxiety triggers, and tips for effective interactions. “It humanizes the person in the clinic and helps reduce stress for everyone involved,” explains Pham.

Pham envisions the app being useful beyond the IDD community. “Wouldn’t it also be incredibly helpful for people with dementia? Or non-English speakers?” she asks. “We’re trying to create the health care equivalent of border cuts — a system designed to be comprehensive, not patchy.”

The Role of Technology in Transforming Care

Technology is proving to be a game changer in improving health care for neurodivergent individuals. Telehealth, for example, allows doctors to observe patients in their own home environments, reducing the stress of traveling to medical offices.

“Telehealth provides a clearer window into a patient’s daily life,” says McIntosh. “It is improving access and quality of care for autistic individuals.”

AI-powered platforms are another promising innovation. Avela Health uses artificial intelligence to deliver scalable and personalized care plans based on evidence-based methodologies such as Natural Developmental Behavioral Interventions (NDBI). “These tools integrate seamlessly into daily routines, providing families with practical solutions,” says McIntosh.

Beyond the delivery of care, technology is also increasing physician efficiency. Pham highlights the potential of AI to simplify administrative tasks, such as record keeping, allowing doctors to focus on patient care. “No one goes into this field to take notes,” she says. “Technology can free up time for what really matters.”