Rethinking healthcare for neurodivergent individuals

Healthcare for neurodivergent individuals has long faced many challenges delayed diagnoses to fragmented healthcare systems.

The burden often falls disproportionately on families, especially caregivers, who face waiting lists, insurance issues and limited resources. But as awareness of neurodivergence grows, so does the opportunity to rethink the way healthcare is delivered, taught, and financed.

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

A personal mission becomes a systemic solution

For Pham, the journey to reimagine healthcare started at home. “My second child, Alex, is 22 and autistic,” she says. “Our family’s experience with their mental health crisis in high school led to questions and research on my part about how we failed them and how the health care system failed us.”

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

This realization prompted Pham to launch IEC, which focuses on preparing physicians to work with people with intellectual and developmental disabilities (IDD), designing systems to meet the diverse needs of patients, and finding better ways to finance those services. “We must balance professional expertise with the wisdom of patients’ and caregivers’ experiences,” Pham emphasizes. “Healthcare must strive for holistic well-being, not just the absence of disease.”

The informal care burden

The gaps in the healthcare system place an enormous 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 healthcare providers, including myself, have quit their jobs to manage the overwhelming coordination required to access quality healthcare. From navigating wait lists to driving to remote appointments, it’s an exhausting journey.”

Compounding the problem is the lack of diverse healthcare options. Most families are funneled into Applied Behavioral Analysis (ABA), which may not be right for every child. “This over-reliance on healthcare providers and the limited spectrum of services makes an already challenging journey even more challenging,” McIntosh notes.

Building a culture of inclusion

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

“Our healthcare partners tell us that the process changes them,” says Pham. “It 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 have all the answers.”

An example of this joint approach is the Always Uniquely Me appdeveloped 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 to the doctor and helps reduce stress for everyone involved,” Pham explains.

Pham anticipates that the app will be useful beyond the IDD community. “Wouldn’t that also be extremely useful for people with dementia? Or non-English speakers?” she asks. “We are trying to create the health care equivalent of austerity – a system that is designed to be inclusive rather than retrofitted.”

The role of technology in transforming healthcare

Technology is proving to be a game changer in improving healthcare for neurodivergent individuals. For example, telehealth allows physicians to observe patients in their home environments, reducing the stress of traveling to medical offices.

“Telehealth provides a clearer insight into a patient’s daily life,” says McIntosh. “It improves both the accessibility and the quality of care for autistic people.”

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

In addition to healthcare delivery, technology also improves physician efficiency. Pham highlights AI’s potential to streamline administrative tasks such as note-taking, allowing doctors to focus on patient care. “No one enters this field to take notes,” she says. “Technology can free up time for what really matters.”