In late June, a 4-year-old non-speaking autistic boy named Ollie was scheduled to fly from Utah to Florida to receive an infusion of umbilical cord stem cells. His mother, Taylor, had raised $12,500, mostly donations from family and friends, to cover the out-of-pocket cost for the procedure. 

Taylor is part of a growing wave of families paying up to $20,000 per session for these treatments, even though the largest clinical trial of the procedure found no benefit over placebo. 

Autism is a spectrum of extraordinary human experience worthy of deep respect, and that many autistic people need high-quality, coordinated healthcare to thrive.

I’ve spent 20 years caring for kids like Ollie as a pediatric neurologist and autism researcher. My interdisciplinary team and I care for thousands of autistic children each year. Families come in asking about stem cell therapy and many other interventions. Many arrive already having tried them, often at extraordinary out-of-pocket cost, usually without the benefit they hoped for. 

These parents are not reckless.  Ollie’s mom Taylor said, “I have to at least try.” But autism care today is fragmented and largely behavior-focused — and has left them without better options.

I have found that autism is a spectrum of extraordinary human experience worthy of deep respect, and that many autistic people need high-quality, coordinated healthcare to thrive. What works for autism therapy, and what insurers should pay for, is care that shows real, measurable improvements in a child’s physical and mental health, neurodevelopment, safety, adaptive skills, and quality of life. The good thing is there are gold standard assessments that already exist. 

Not All Autisms Are the Same

One in 31 children in this country is autistic. That’s over two million children and an increase of more than 300% in the past 25 years. Although this increase is in part because of improved diagnostics and a widened definition of autism, it does not minimize the fact that some children’s lives are profoundly affected by the condition. 

About one-third of children with autism have significant developmental delays.  A four-year-old who doesn’t yet speak often has motor and cognitive difficulties, for example, as well as co-occurring medical conditions such as epilepsy, genetic and metabolic disorders, sleep disturbances, and gastrointestinal disorders. 

At the other end of the spectrum are children who move through school at grade level. They manage symptoms that may go unnoticed, such as sensory sensitivities. The children and their parents may construct specific routines and invest in deep special interests. Many take on the added work of masking the condition by consciously performing neurotypical behavior to fit in. Studies suggest that these children and teens are more likely than neurotypical peers to struggle with significant anxiety and depression.

No two autistic people have the same profile, which is why the spectrum looks more like a varied landscape than a straight line.

Since the term “autism” appeared in the medical literature in the 1940s, it has always been defined by behaviors like differences in social communication, a need for predictability and routine, and unusually intense interests. In this way, autism has been defined by how a person interacts with others and moves through the world — rather than by biology that may provide a more precise explanation for the complex symptoms children and teens might present. 

But research is now beginning to identify biologically distinct subtypes of autism with unique developmental profiles and genetic signatures. 

Beneath autistic traits are tremendous biological variations. There is evidence of hundreds of genes affecting brain development that present in different autism subtypes. Some studies have found variation in the ways metabolic and immune processes affect health throughout the body of those diagnosed with autism. 

Variations in sensory processing  can shape how a person experiences light, sound, touch, and pain. 

No two autistic people have the same profile, which is why the spectrum looks more like a varied landscape than a straight line.

Roughly one in ten autistic people have some form of savant skill — exceptional memory, calculation, music, or art – that can be a cherished aspect of one’s identity. 

For some in this diverse landscape, autism is a valued identity, not a condition to be treated. That reframing is among the neurodiversity movement’s most powerful messages. Traits read by neurotypical expectations as rigidity or inefficiency – intense, single-track focus and a detail-oriented approach – can be experienced instead as depth and reliability, translating in school and work into sustained concentration, thoroughness, and precision. Roughly one in ten autistic people have some form of savant skill — exceptional memory, calculation, music, or art – that can be a cherished aspect of one’s identity. 

Why Autism Care Is So Expensive

Central to the movement is equitable, high-quality healthcare for those who need it. For the families of children requiring intensive daily support, those needs are profound. Many of these children require specialized medical care – ongoing visits with neurologists, gastroenterologists, geneticists, and other specialists, often coordinated across multiple health systems. Many children require daily therapeutic services like behavior therapy, occupational therapy, speech-language therapy, and mental health services. 

All of this contributes to financial strain. Parents routinely reduce their work hours or leave jobs entirely to coordinate their child’s care. Care for some  children with complex needs can cost more than $2 million dollars over a lifetime. 

The expansion of autism services over the past few decades has been a meaningful step forward. The most important and most costly benefit has been behavior therapy — also called applied behavior analysis or ABA. 

In 2001 Indiana passed the nation’s first state mandate requiring ABA insurance coverage. Today all 50 states require some form of coverage, but the cost of ABA coverage has become unsustainable. Medicaid spending on autism-related behavior therapy soared from $660 million in 2019  to $2.2 billion in 2023 and continues to rise. 

States have watched their autism budgets explode: Indiana went from $21 million in 2017 to $611 million by 2023, and North Carolina’s now exceeds $505 million annually and is projected to reach $1 billion by 2027. 

Our health system pays providers based on how many hours of services they deliver, not based on whether children are getting better. 

The money is pouring in faster than rising diagnoses alone can explain. That’s because children are receiving behavior therapy for years while underlying medical and developmental conditions are inadequately treated. For instance, a child who receives 20-40 hours of ABA per week to reduce behaviors such as aggression and to address basic communication and self-care needs, might have untreated constipation, insomnia, or seizures making their symptoms worse. When concurrent medical conditions go untreated or developmental needs like speech-language therapy and occupational therapy are neglected, both the behaviors and underlying skill gaps intensify.

Recent investigations by The Wall Street Journal and New York Times revealed outrageous billing and outright fraud by behavior therapy providers in Indiana, Colorado, Minnesota, and North Carolina. 

States and health plans respond to such practices by increasing restrictions on autism therapy broadly and cutting reimbursement rates, imposing hourly caps, and adding layers of prior authorization. 

But these actions reduce access to care instead of addressing the real problem. Our health system pays providers based on how many hours of services they deliver, not based on whether children are getting better. 

What the Data Says

In 2021, the International Consortium for Health Outcomes Measurement created the first outcomes assessment framework in autism to support care that spans daily skills, quality of life, family functioning, sleep quality, mental health, social communication, and behavior. Each is captured through a structured questionnaire, checklist, or rating scale, and completed by clinicians and parents at regular intervals. 

But a measurement framework is only as good as the care it measures. That care requires interdisciplinary teams working together. 

The most effective autism care model involves physicians, behavior therapists, speech-language and occupational therapists, counselors, and care coordinators collaborating toward shared goals for the same child. When a child isn’t sleeping at night, the physician and behavior therapist address it together. When a child’s sensory processing and anxiety are driving meltdowns, the team treats the root causes, not just the behaviors. Progress is tracked across domains at regular intervals.

The future of autism care meets the needs of autistic individuals, their families, providers, and payers simultaneously, bringing fragmented services together  into one team and one plan.

Research shows this approach works. 

In peer-reviewed studies in Translational Psychiatry and the Journal of Personalized Medicine, children receiving medically-integrated, interdisciplinary care showed greater gains compared to children receiving fragmented care. These children achieved results with nine to twelve hours of behavior therapy per week rather than the forty-hour standard at many behavior-only centers, and at significantly lower cost to payers. 

The future of autism care meets the needs of autistic individuals, their families, providers, and payers simultaneously, bringing fragmented services together  into one team and one plan. This plan should be individualized for each child’s medical, developmental, and behavioral needs.  It should be coordinated for families and providers. It also must be sustainable for payers.

When integrated plans become the norm, then parents like Taylor won’t have to pursue unproven treatments for their children. They’ll already have what they need.