Is Autism Spectrum Disorder Getting Lost in Behavioral Health Care?What payers can do to make ASD a top priority

A search for “behavioral health” in The New York Times and The Washington Post turned up 3,163 results in the past year, and searches for “substance use,” “opioids” and “opioid crisis” similarly turned up thousands of results. A search for “autism?” Just 213 search results in the same time period.

The fact that autism spectrum disorder (ASD) is getting lost in the broader national conversation about mental health is not surprising. The opioid epidemic has pushed substance abuse disorder to the media forefront. Similarly, the pandemic was instrumental in shedding light on mental health concerns as we collectively struggled with isolation, loss and uncertainty. Direct intervention with people struggling with depression, anxiety and substance abuse disorder can deliver immediate returns on reducing emergency department visits, hospitalizations and deaths. Getting lost in the conversation, however, is the need for an immediate and long-term strategy to address other areas of behavioral health, including the rapidly growing segment of autism spectrum disorders.

Media and legislative focus on other marquee issues raises the question of whether people diagnosed with autism and others that autism affects – caregivers and caregivers’ employers and extended communities – are increasingly suffering from lack of timely diagnosis and care options as health systems, communities, mental health practices and systems such as schools, and community-based organizations focus on what is in the spotlight.  The dearth of resources and smart solutions will plague us far into the future.

The Case for Keeping ASD Diagnosis, Care and Focus a High Priority

The intertwined nature of ASD and other behavioral and physical health conditions highlights the importance of examining the hidden costs stemming from delayed diagnosis and treatment. These include, in many cases, poorer overall wellbeing, increased anxiety, falling behind academically and lost productivity and employment for individuals and their families. In addition, there is a cost to families. An Australian study showed the median family cost of ASD was estimated to be $34,900 AUD (Australian dollar) a year, with almost 90 percent of that from loss of income.¹

U.S., insurance plans’ benefits do not necessarily mitigate the long-term cost of barriers to diagnosis and delays in treatment. They tolerate long wait lists for diagnosis and meeting minimum network standards for ASD care is acceptable. (Combine this with next paragraph)Faster, more effective diagnosis and treatment reduces short- and long-term costs. A significant cost of waitlists and care gaps come in the form of emergency department use. Children and adults with ASD are more likely to use emergency departments² and research has shown that ASD care can prevent psychiatric hospitalization.³

A study in Ontario, Canada showed a major disparity existed between intensive behavioral interventions (IBI) delivered upon diagnosis and IBI delivered after the delay typical for such services in Canada. The results suggested timely interventions optimize outcomes, improve future independence and lower costs from provincial and societal perspectives.⁴

Beyond the actual short- and long-term costs, there are many societal and emotional costs as well. A 2016 study of women diagnosed with autism late in life showed that not knowing early on that they had autism hurt them. Many reported feeling misunderstood and alienated at school.⁵

Recommendations for Payers

ASD prevalence is on the rise. The CDC recently reported, based on 2020 data, the prevalence of autism spectrum disorder in the United States has now risen to an all-time high of 1 in 36 children; in California, the number is now 1 in 22. ⁶ Sidelining these populations and diverting dollars to populations that suffer from substance abuse disorder and mental health conditions comes at an extraordinary immediate and long-term cost.  Hoping members with lifelong disorders like ASD will switch plans and take their problems and costs with them to another payer is a cruel and failing approach. Having a large proportion of members with ASD or ASD dependents is inevitable, so the time to create a sustainable solution for care is now.

To address the issue of whether ASD treatment is falling to the wayside in behavioral health, payers should take several steps.

• Study how the ASD service line is built – First, take a look at how the payer organization is handling behavioral health care and its various components today – mental health treatment, substance use disorders, eating disorders, intellectual and developmental disabilities and ASD. What do the service lines look like and are they specialized enough to responsibly address the need? Therapy for specialty conditions needs training, focus and understanding of the population’s needs.
• Consider how payer products interplay between ASD and other conditions – ASD rarely stands alone, and early and ongoing treatment can help mitigate the risks of expensive spiraling mental and physical health problems that co-occur. ASD has long been known to be intertwined with other mental health issues. Autistic adults are significantly more likely to have co-occurring mental health concerns such as depression and anxiety than those who do not have ASD, something many people with ASD are well aware of. In a study involving people with ASD in developing autism research priorities, anxiety and depression were the two highest-ranking outcomes in answer to the question, “this outcome matters to me,” behind quality of life.⁷
• Ensure care partners are open to new, cost-effective, person-centered treatment options and take a proactive approach to early intervention – While extensive applied behavioral analysis (ABA) therapy has long been the cornerstone of care for ASD, other effective modalities have emerged to supplement ABA and help reduce the costs of care, while providing individualized care paths. Early intervention can also reduce costs over time, not only in the costs of care but in other hidden costs to families and the individual. The current behavioral health care system gravitates towards a model focused on “fixing” individuals, but when it comes to ASD, care partners need to help integrate and deepen the application of person and caregiver-centered care with emerging treatment options.
• Signing up more providers into a network is not always the solution – Thoughtfully managed networks enable access and quality care. A specialized ASD network that delivers a variety of approaches to meet the personalized needs of those diagnosed with ASD and those of their caregivers is better than a network that just keeps adding providers that are not well-coordinated or who lack expertise.

Catalight supports ASD families with advanced care solutions with the perspective that one size does not fit all. We provide case management, person-centered treatment options, a focus on family wellbeing as an outcome measure and clinical innovation. Catalight’s Research Institute is a leader in collecting and researching data to drive evidence-based approaches to ASD treatment—redefining the future of care.

^[1] The Cost of Autism Spectrum Disorder

^[2] Gathering Data to Improve Emergency Department Visits

^[3] Effect of Outpatient Service Utilization on Hospitalizations and Emergency Visits Among Youths With Autism Spectrum Disorder

^[4] Cost-Effectiveness of Wait Time Reduction for Intensive Behavioral Intervention Services in Ontario, Canada

^[5] The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype

^[6] Data & Statistics on Autism Spectrum Disorder

^[7] Listening to the autistic voice: Mental health priorities to guide research and practice in autism from a stakeholder-driven project