Autism acceptance differs from awareness in that acceptance reinforces the need for inclusion—an acknowledgement that neurodiversity can be a strength and that people with autism are valued, contributing members of society.
This sentiment has never been more important as the United States faces an unprecedented and fast-growing rise in autism cases. Unfortunately, against that backdrop, it’s also become clear that the way we as an industry and a health system have supported families with autism for the past 50 years is no longer acceptable or sustainable. Too many people are waiting too long for support, stuck in endless therapy loops with little progress, or falling through the cracks entirely.
Fortunately, new innovative approaches are coming to the fore and increasingly proving out their ability to deliver better, more efficient results. As momentum and credibility build, we need to lean into these with more attention, increased funding, and regulatory tailwinds to help increase both access to resources for and acceptance of autism.
Urgent and Growing Need for Autism Support
The growth in autism cases in the U.S. is staggering. In the 1980s, four in every 10,000 people were diagnosed. Today, that has risen to one in 36 children. While people have many competing theories behind this increase, there is no arguing the number of cases nor the need for more resources to help these individuals navigate their daily lives. Whatever the cause, the healthcare industry is simply unable to serve the people that need support.
According to the Society for Development & Behavioral Pediatrics, more than half of families are waiting nine months or longer for their first appointment. Without this, they cannot secure a formal diagnosis, which means they cannot qualify for the insurance- or Medicaid-covered therapies that are crucial to helping children with autism navigate the world around them.
Even if a family does secure a diagnosis and begins therapy, traditional clinics are few and far between—most are a long drive away, only available during the day, and require dozens of hours of therapy per week. For the average family trying to manage jobs, school and life, therapy becomes nearly unattainable.
Innovations Overcoming Therapy Hurdles
Fortunately, since the pandemic, three shifts in Applied Behavioral Analysis (ABA)—considered the gold standard for autism therapy by most clinicians and insurers—have begun to flip this dynamic on its head. Together, they portend a new reality for families with autism, one that makes support attainable and affordable.
- Better Trained Therapists: In traditional in-person care, a Registered Behavior Technician (RBT)–who is required only to have a high school degree and obtain a basic certification–provides the day-to-day support and interactions with a patient and family, with a group of RBTs overseen by a more qualified, PhD- or Master’s-level Board Certified Behavioral Analyst (BCBA). This low bar for RBT credentialing can result in less effective or efficient care, and it often leads to high turnover rates–meaning families are less satisfied with the results of therapy and are unable to form lasting bonds with clinicians.
Further, according to the Center for Autism Disorders, it’s recommended that families engage in 25-40 hours of treatment per week with RBTs. This is a high bar for any family, even more so for working families or two-income households. Much of this is because of the inefficiency of therapy with RBTs and the churn rates.
Newer models that flip the treatment model on its head are proving that this level of support is unnecessary. By employing BCBAs as front-line support instead of RBTs, providers can deliver the customized, 1:1 therapy that nets much more efficient care. Of course, common sense says there are fewer BCBAs, which creates an even wider supply and demand gap. But with the advances in virtual therapy below, that hurdle is removed.
- Virtual Therapy: The proving out of virtual healthcare and therapy during the pandemic has transformed the landscape of behavioral health. It has evolved in short order to the point where technology allows us to mirror real-world settings and interactions. And because it’s delivered in a familiar setting and with devices that are comfortable for patients, there is an easy embrace of the medium.
At a time of significant provider shortages, this ability to draw on professionals from any place and time zone to deliver therapy to patients anywhere is a gamechanger. For families using virtual therapy providers, it has helped drop the wait time for treatment from months to just days and allows them to schedule sessions at times that are most convenient for them.
This new medium is also what makes the use of BCBAs as primary clinicians possible. Freed from the constraints of having to live near their place of work and managing RBTs, many BCBAs feel empowered because they can get back to why they entered the profession in the first place: to help people rather than staff.
- Expanded Insurance Coverage: One persistent challenge with securing and maintaining therapy is the lack of adequate insurance coverage. Insurers are still grappling with the increase in diagnoses and the requirements for in-person care. And, in some cases and states, they are responding with reductions in coverage or caps on the amount of hours a patient can access every year.
But many insurers recognize the need to reverse this trend and provide better support for members. The emergence of new models that rely on more efficient support from better trained clinicians and using virtual therapy have coincided with the testing of new outcomes- or value-based care (VBC) models for behavioral health. This emphasis on delivering the types and modes of therapy best suited to each patient and that enables them to learn the skills they need to engage the world around them is ideally matched to the goals of Autism Acceptance Month.
While these changes can be life changing for patients and are groundbreaking for the industry, they are still in the early stages. To make access to BCBA-driven virtual therapy a widely accessible standard, we need providers, insurers and policymakers to all be informed and rowing together so that the funding, the coverage and the regulations all fall into place.
That means streamlined national licensing requirements and telehealth approvals, payor-endorsed best practices for VBC reimbursements, and rigorous peer-reviewed studies on the efficacy of new care models and modalities—all of which will help unlock expanded therapeutic support and enhance impact for patients.
Only then will Autism Acceptance Month become a cause for celebrating the progress we’ve made rather than a reminder of how much work remains to be done.
About Jeff Beck
Jeff Beck is the CEO and co-founder of AnswersNow, a platform that supports parents of children on the autism spectrum by pairing them with their own personal certified expert.
