Making High-Quality Autism Care a Reality for All Children
We know that whole-child, neurodiversity-affirming care leads to the best outcomes. It's time to make it available to families everywhere.
By Suzanne Goh, MD, BCBA, and Neil Hattangadi, MD
Autism affects close to 1.6 million children in the U.S. and 78 million people worldwide. Differences in social communication and behavioral flexibility are among the core features of autism. An autism diagnosis can open the door to valuable services including access to medical, developmental, behavioral, and family services that can shape a child’s current and future options, opportunities, and quality of life.
A child diagnosed with autism today might become a scientist, musician, writer, actor, or physician, or pursue nearly any field of work or study. Some autistic adults have even called their own unique style of cognitive processing a “superpower.” But at the same time, there’s the possibility of vastly different outcomes. In the absence of high-quality, evidence-based treatment, a child may remain stalled in their progress or lose developmental skills, behaviors like aggression and self-injury may become part of daily life, and a high level of continuous care may be needed.
As physicians, and co-founders of Cortica, we’ve created our country’s first and largest network of multidisciplinary, whole-child autism care centers to remove the significant barriers that prevent autistic children and their families from accessing the care they need. Our thousands of knowledgeable, passionate Cortica teammates nationwide are committed to delivering life-changing care through our proven approach – one child, one family, and one community at a time. Although we know which treatments are most effective in autism care, the unfortunate fact is that too many families in the US and beyond still lack access to high-quality care.
It’s the System That’s Broken, Not the People
Getting an autism diagnosis means being thrown into a complex healthcare system where options for quality care are extremely scarce. The current state of fragmented care has led to several harmful consequences:
Delayed diagnosis and treatment: When precious time is lost, so are important opportunities for skill growth.
Lack of coordination among providers: Care is often split between multiple specialists, and an autistic child may receive behavior therapy from one provider, speech therapy from another, and occupational therapy from yet another. This can lead to conflicting recommendations, confusion for caregivers, and reduced effectiveness of care. Fee-for-service reimbursement does not support professional collaboration and care coordination.
Limited access to services: Families face long waitlists of months and sometimes years for autism services. A research study at Stanford University found that for every autism service delivered to a child in the US, 18 other children are waiting.
Excessive financial burden: The financial cost to families and to payers for autism care is high, and our current high-utilization, high-cost system doesn’t translate into better outcomes.
Stress and burnout: Stress and burnout affect caregivers, leaving them with fewer reserves to dedicate to important aspects of their child’s care, other family members’ care, and their own self-care.
These negative consequences of the status quo are far-reaching and long-lasting. What’s more, the inequities of care are exacerbated by racial, economic, geographic, and other factors.
Setting the Standard for Whole-child, Whole-family Autism Care
Autistic people and their families deserve access to high-quality, comprehensive care that’s tailored to their unique needs, regardless of background or financial resources. This is the reason we created Cortica. Our mission is to lead the field in offering families a whole-child approach to care that integrates the latest, cutting-edge research and translates meaningful advances directly to patient care.
Ten years ago, we opened a private neurology practice in a small one-room office in San Diego, California, with a vision to provide integrated whole-child autism care. Today we have 23 centers across seven states providing in-home, in-center, in-school, and telehealth services to thousands of children and families.
Our current team includes pediatric neurologists, pediatricians, nurse practitioners, speech-language pathologists, occupational therapists, physical therapists, music therapists, behavior therapists, mental health professionals, and administrators who all have expertise in autism and child development, and who are committed to bringing world-class care to families across the country and around the world. Innovation in autism care is happening at a faster pace today than ever before, and the most promising diagnostic and therapeutic innovations for autism are being studied in research trials at Cortica’s centers.
Together, our clinicians and researchers are making a significant impact on the lives of children and families, and inspiring new generations of professionals from multiple disciplines to build their careers in autism services. We’re committed to continuing to train, mentor, and support these professionals so they can increase families’ access to outcomes-based care.
Neurodiversity-affirming Care Means Better Outcomes
No discussion about autism care is complete without a discussion of neurodiversity. The neurodiversity movement is a human rights movement based on the viewpoint that differences in neurology and behavior aren’t deficits or deviations because there’s no single “right” or “normal” way of being.
Neurodiversity training is essential for all healthcare professionals. All too often we see families continue to suffer from encounters in healthcare settings where a deficit-oriented view of autism is ingrained. When autism therapies try to change autistic characteristics to conform to a neurotypical standard, the long-term cost to a person’s mental health is profound.
Neurodiversity-affirming care supports a person’s development while not attempting to change personal characteristics unless those characteristics cause harm or discomfort to the individual, or a violation of others’ rights. It addresses, whenever possible, any external factors in the environment that reduce a person’s opportunities for enjoyment, learning, advancement, and inclusion into society.
Now is the Time
Today, we can empower autistic people to experience greater health, well-being, and joy. That will require establishing win-win partnerships between providers, payers, and other stakeholders to achieve better results across medical, developmental, behavioral, and family outcomes. It will also require the collaborative expertise of professionals ranging from behavioral interventionists to physicians, who can help us meet the ever-growing demand for our care model.
Value-based care, which focuses on care quality instead of service quantity and encompasses medical and behavioral outcomes, is increasingly being recognized for its role in driving the adoption of effective treatments, reducing fragmentation of care, and ensuring that individuals from a variety of disciplines can advance the field while building enduring and rewarding careers in autism healthcare. We expect to see this care model continue to gain momentum – a welcome development given that the need for high-quality autism care is clear, and the time to act is now.
We all have an important part to play in creating a more equitable and effective system of care for autistic people and their families. If you share our passion, we’d love to hear from you. We invite you to join us in charting the path to health equity for all neurodivergent people.