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Autism has been around for more than 100 years and was first formally recognized as its own medical condition in 1943. Since then, the definition, diagnosis and treatment has continually evolved and expanded, and it was not until the 1980s that it received its own diagnostic category. There’s little doubt that people who meet the conditions for diagnosis have existed much longer than that, it’s important to recognize for today’s conversation that Autism as we now know it exists on a spectrum, and how we qualify and treat it must also match that dynamic. Once we fully recognize this, we can shift beyond a diagnosis and treat model to a to more connected, higher-quality care model that gets ahead of symptoms, coordinates support and takes a wider view of a patient's needs. According to the Centers for Disease Control and Prevention, approximately 1 in 31 children in the United States are identified with autism by age 8, while Autism Community in Action reports that autism prevalence has increased 384% since 2000. Earlier recognition has created meaningful opportunities for intervention and support, but it has also shown the challenges families face after diagnosis.
A diagnosis is only the beginning of a much longer journey. Families need more than treatment; they need confidence and individualized support that grows and evolves with them. We all have a role to play in offering this support – and it’s not up to individual providers alone to navigate this care journey with patients and families.
Growing awareness and improved screening have made it possible to identify autism earlier than ever before, allowing children and families to access intervention during critical periods of development. Early intervention remains one of the strongest opportunities to improve long-term outcomes, helping individuals build skills and receive support when it can have the greatest impact.
Because the need for autism services continues to grow, costs grow with it. The financial impact on the health care system is projected to reach $460 billion this year, climbing toward $600 billion by 2030. The costs are unsustainable, but our mission is clear: to continue access to evidence-based services while safeguarding the system from practices that undermine trust and outcomes.
That begins with recognizing that autism is highly individualized. No two people on the autism spectrum have the same strengths, challenges or support needs, and those needs often evolve throughout childhood, adolescence and adulthood. Care plans should reflect those differences rather than rely on one-size-fits-all approaches.
Autism also frequently exists alongside other behavioral and physical health conditions, including anxiety, depression and gastrointestinal disorders. These co-occurring conditions influence both diagnosis and treatment and further highlight the need for multidisciplinary care that looks beyond autism alone.
Supporting individuals with autism means supporting the whole person. Delivering the right care at the right time requires providers to consider behavioral health, physical health and developmental needs together, ensuring care evolves as individuals move through different stages of life.
The rising costs are largely driven by a smaller number of bad actors. We all have a responsibility to identify and identify those who aren’t leading with clear and consistent industry standards. Addressing fraud, waste, and abuse in autism is fundamentally about protecting quality care during developmental windows, not just controlling spend.
Even when high-quality services are available, families often face the difficult task of coordinating them on their own.
Someone may receive behavioral health services such as applied behavior analysis (ABA), speech-language therapy and occupational therapy while also seeing pediatricians, medical specialists and psychiatric providers. At the same time, families may be coordinating individualized education programs (IEPs), school-based services, caregiver coaching and community resources.
Each of these services plays an important role, but they frequently operate independently, leaving families to connect the dots themselves.
This disconnected experience creates unnecessary burdens for caregivers while increasing the likelihood of inconsistent care, duplicated services and treatment plans that are not fully aligned. It also contributes to broader challenges across the health care system, including inconsistent quality standards, unnecessary or misaligned treatment and the significant financial burden associated with long-term, high-cost care.
Fragmentation can also make it more difficult to maintain oversight and accountability across the health care system, creating more opportunities for fraud, waste and abuse. Recurring issues—including incomplete medical records, unsupported billed units or service hours, patient and beneficiary identity issues, unverifiable providers and chronic medical review denials—demonstrate how gaps in coordination can allow inappropriate billing and unnecessary services to go undetected.
The consequences extend beyond financial loss. Fraud, waste and abuse divert resources from legitimate care and can leave individuals receiving services that no longer reflect their needs, delaying access to more appropriate treatment. It is one of the clearest examples of why autism care must move beyond isolated services toward coordinated, whole-person care that improves outcomes across the lifespan.
Addressing fragmentation requires a more integrated approach to autism care – one that brings together behavioral health, primary care, specialty care, educational support and community resources around the unique needs of each individual.
Expanding and coordinating autism services is only one piece of the solution. Improving quality also requires clearer expectations for evidence-based care that aligns outcomes over the volume of services delivered.
Autism care presents an opportunity to rethink how health care serves individuals with complex, lifelong needs. Solving fragmentation, improving quality and curbing fraud, waste and abuse are not separate initiatives – they are part of the same strategy for building a more connected, accountable system that better serves individuals and families.
Achieving that vision will require action across the health care ecosystem. Health care leaders, providers and policymakers all have a role to play by advancing meaningful quality standards, strengthening care coordination and investing in integrated models of care that keep individuals at the center of every decision.
These principles should guide the next chapter of autism care as the industry works toward a new standard of care. By bringing together behavioral and physical health and focusing on the outcomes that matter most to individuals and families, we can create a more coordinated, person-centered system that helps every person with autism thrive.
Article written by: Dr. DeborahFernandez-Turner, Deputy ChiefMedical Officer Behavioral Health, Aetna, a CVS Health company
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