Autism Spectrum Disorder (ASD) is widely recognized as a lifelong condition. Yet, much of the discussion surrounding autism services tends to focus on children, with the assumption that they will outgrow their symptoms or that their needs will be met within the education system. However, autism does not magically disappear once individuals reach adulthood. Instead, adults with autism often face a unique set of challenges, including a lack of services, limited treatment options, and, perhaps most significantly, a significant gap in information about available resources. As a result, many adults with autism are left to navigate the complexities of daily life without the support they need, often leading to diminished quality of life.
A recent study conducted by Case Western Reserve University highlighted these gaps, underscoring the difficulties adults with autism face when transitioning from adolescence into adulthood. The research, which surveyed over 174 families in Northeast Ohio, found that while services for children with autism have improved over the years, the same cannot be said for adults. More than half of the respondents (51%) reported a lack of information about transitional autism services for young adults, and 44% said such services were simply unavailable. Additionally, over 43% of respondents indicated they were on waitlists to receive autism services, signaling that the demand for care is significantly outpacing the availability of resources. These findings underscore a critical issue: the transition from adolescence to adulthood is a crucial period for individuals with autism, and the existing system is struggling to meet their needs.
The Growing Concern: Aging Out of Services
For many individuals with autism, the transition from childhood to adulthood is a time of heightened uncertainty. While childhood services, including school-based support and early intervention programs, often provide much-needed resources, these services typically end once the individual reaches adulthood. This is problematic, as individuals with autism often require continued support to thrive as they enter the workforce, pursue higher education, or navigate independent living.
Karen Ishler, a senior research associate at Case Western Reserve University and co-director of the study, articulated the concern: “What happens when they age out? It’s a growing concern.” This question is increasingly relevant, as families and caregivers are left to manage the uncertainty of whether their loved ones will have access to adequate services once they reach adulthood. For many, this transition marks a significant point of stress, as families struggle to find sufficient resources to ensure that their loved ones continue to receive the care they need.
David Biegel, a social work professor and co-director of the study, added, “Many young people with ASD are at risk for reduced quality of life in adulthood.” He explained that during these transition years, families face numerous stressors—both emotional and financial—as they try to navigate the available services. The lack of clear options and insufficient support structures create a vulnerable situation for individuals on the autism spectrum, and the absence of services only exacerbates these challenges.
The Impact on Families and the Need for Better Service Delivery
The inability to access appropriate autism services doesn’t just affect the individuals with autism—it also places an immense burden on their families. Parents and caregivers often find themselves in the difficult position of advocating for their loved ones, while also managing the stress and uncertainty that comes with the lack of services.
The gaps in autism services for adults are not only a concern for individuals with autism and their families but also represent an untapped opportunity for behavioral health providers to fill critical service gaps. Providers have the chance to step in and create programs that cater to the unique needs of adults with autism, helping to bridge the service delivery void.
Additionally, investors are increasingly recognizing the potential in the autism space. According to M&A advisory firm Mertz Taggart, autism deals accounted for nearly half of all behavioral health transactions in the third quarter of 2019. This interest is driven by the growing demand for services, and it signals a burgeoning market for providers who are willing to meet the needs of the adult autism population.
Federal Action: The Autism CARES Act of 2019
On the federal front, there has been some movement aimed at addressing the challenges faced by adults with autism. In September 2019, President Donald Trump signed the Autism CARES Act of 2019 into law. The bill authorizes more than $1.8 billion in funding for autism services over the next five years. While the Autism CARES Act is largely an update to the 2014 version of the law, it includes some important new provisions—particularly the inclusion of adults with autism in federally funded research and services for the first time.
Historically, autism programs funded by the federal government have been focused on children, leaving adults with autism with limited options. The inclusion of adults in the Autism CARES Act represents a shift in how the government addresses autism, recognizing that individuals on the autism spectrum need support at every stage of life, not just in childhood. This change has been widely welcomed by advocates, including Autism Speaks, which praised the bill as a win for adults with autism who have historically “fallen through the cracks.”
Angela Geiger, President and CEO of Autism Speaks, remarked, “This legislation ensures sustained funding to better support people with autism across the spectrum and at every stage of life.” However, while the inclusion of adults in the Autism CARES Act is a step in the right direction, it has not come without criticism. Some experts argue that while the act promises funding and research into autism services for adults, it does not specifically allocate resources to improve the actual delivery of services for this population. As Molly Candon, a research assistant professor of psychiatry at the University of Pennsylvania, pointed out, “Without the ability to improve services delivery, there’s no point in doing the research.”
Candon’s point highlights a critical flaw in the law: the focus on research and funding does not necessarily translate into tangible improvements for adults seeking services. While the inclusion of adults in the Autism CARES Act is undoubtedly a positive development, without concrete measures to improve service delivery, many adults with autism and their families may continue to face barriers to care.
The Road Ahead: Filling the Gaps in Autism Services
Despite these challenges, there is significant potential for growth and innovation in the field of autism services for adults. As the need for services continues to rise, behavioral health providers, advocacy organizations, and policymakers must work together to create solutions that address the gaps in care. This may include expanding existing programs, developing new treatment models, and increasing funding for adult-focused services.
The Case Western Reserve University study has illuminated many of the obstacles adults with autism face, but it has also created an opportunity to rethink how we provide care for individuals on the spectrum. With more targeted funding, greater awareness, and a collaborative effort between stakeholders, we can begin to close the service gaps that have left so many adults with autism without the support they need to thrive.
The growing interest from investors and the recent legislative developments are promising signs that positive change is on the horizon. With a concerted effort to improve service delivery, there is hope that adults with autism will no longer have to fall through the cracks, and will instead have access to the resources they need for a fulfilling and successful life.
