CEO’s Letter: Addressing the crisis in access to autism care

By Keith Wargo
Keith Wargo's headshot

Over the past 20 years, the prevalence of autism spectrum disorder (ASD) has grown tremendously to 2.3% of children today. But while screening and diagnosis have become more accessible, the systems in place for providing quality, affordable care are not meeting the growing community need.

Too often, the lack of access to care leads to behavioral or emotional crises that can have dire effects on the health and well-being of autistic people and their loved ones. In the face of unpredictable, aggressive behavior, some families resort to bringing a loved one to the emergency room—but these days, the ER is in a crisis of its own.

A  Washington Post article recently illustrated the devastating impact of inadequate autism care in the ER and broader healthcare system. The article shared a family’s tragic story of losing their son Zach to a seizure after two extended stays in the ER while he awaited a bed in an inpatient facility that could provide care for his violent outbursts.

Zach’s experience in the ER is not uncommon among people on the spectrum. Research shows that children with ASD are  nine times more likely to visit the ER for psychiatric problems than children who don’t have autism, and autistic adolescents are  four times more likely to visit the ER than their peers. But despite the higher frequency of admission, autistic people who go to the ER demonstrate lower patient satisfaction and higher unmet healthcare needs related to physical and mental health.

A culmination of bottlenecks and failures at multiple levels of our healthcare system has made the ER a last resort for most families. One contributing factor is the lack of easy access to behavioral and mental health services that could help prevent and manage the types of crises that drive families to seek urgent help. Other factors are limitations in insurance coverage for needed mental health interventions and a lack of reimbursement for providers offering these services.

Through our diverse programs and research, Autism Speaks is driving change at multiple levels, improving access to care for people with autism and ensuring that local community providers—not just autism specialists— have the knowledge and skills they need to effectively serve this population.

Much of this happens through our  Autism Care Network, a partnership of 24 participating medical centers across the U.S. and Canada, with which, we recently published our  Clinician Guide: Program Development and Best Practices for Treating Severe Behaviors in Autism, a resource for licensed professionals and healthcare systems offering detailed guidance for understanding severe behaviors in autism and developing programs that can effectively serve those with this intensive level of need. Autism Speaks has also been at the forefront of insurance reform—after decades of advocacy, all 50 states now have meaningful coverage for autism-related therapies.

We were heartened that at the end of last year that Congress included as a part of the Consolidated Appropriations Act of 2023 several provisions to improve mental health parity protections, strengthen the nation’s mental and behavioral health infrastructure, and promote enhanced integration of behavioral health services.

However, while we are grateful for that progress, the failures of our fragmented system of care are unlikely to be solved by any single bill or regulatory action. But at every juncture, where there is a chance to make meaningful progress, it is incumbent on our leaders to set aside political differences and work together to improve our health care system so that no one has to experience what Zach, his family, and countless others have had to endure.

Autism Speaks does not provide medical or legal advice or services. Rather, Autism Speaks provides general information about autism as a service to the community. The information provided on our website is not a recommendation, referral or endorsement of any resource, therapeutic method, or service provider and does not replace the advice of medical, legal or educational professionals. Autism Speaks has not validated and is not responsible for any information, events, or services provided by third parties. The views and opinions expressed in blogs on our website do not necessarily reflect the views of Autism Speaks.