When it comes to autism, the conversation tends to focus primarily on children. Public discourse, resources, and services have long been geared toward helping children with Autism Spectrum Disorder (ASD), often through early intervention programs and educational support. However, autism is a lifelong condition, and the challenges it poses don’t simply disappear when an individual reaches adulthood. In fact, adults with autism often face significantly fewer treatment options, limited access to services, and a distinct lack of information compared to their younger counterparts. This is a critical issue, as the transition from adolescence to adulthood can be fraught with uncertainty, stress, and a range of unmet needs for those living with ASD.
A recent study by Case Western Reserve University sheds light on the gaps in autism services for adults and highlights the struggles many families face when navigating these transitions. By surveying more than 174 families in Northeast Ohio, the researchers discovered that a significant portion of families lacked both access to and information about services tailored to the unique needs of adults with autism. Over half (51%) of respondents indicated that they had insufficient information about autism services for transitioning from adolescence into adulthood, while 44% noted that such services were simply unavailable to them. Adding to the concern, 43% of respondents reported being on waitlists for autism services, indicating that demand for adult-focused autism care is far outstripping supply.
The Transition to Adulthood: A Critical Period
The transition from adolescence to adulthood is a critical period for individuals with autism, and yet it remains an area of significant neglect in terms of service availability. This transitional phase, often between the ages of 16 and 30, is marked by a shift in responsibility—from school-based services to independent living and adult care. Yet, without the appropriate services in place, many adults with autism struggle to adjust to the demands of adulthood.
David Biegel, a social work professor at Case Western Reserve University and co-director of the study, emphasized the potential risks of this transition: “Many young people with [ASD] are at risk for reduced quality of life in adulthood.” This observation highlights an often-overlooked reality: that autism’s effects do not diminish with age, and the absence of necessary support can lead to increased challenges in adulthood. Families of adolescents and young adults with autism are also under considerable strain during this time. Many find themselves overwhelmed by the lack of clear resources and the financial and emotional burden of finding support for their loved ones.
Karen Ishler, senior research associate at Case Western Reserve University, echoed Biegel’s sentiment, stating, “What happens when they age out? It’s a growing concern.” The question of what happens after individuals with autism “age out” of services remains unanswered for many families. Once they surpass the eligibility age for educational and government services, adults with autism often fall into a service void, where few if any resources exist to address their ongoing needs.
Gaps in Service Availability: An Opportunity for Behavioral Health Providers
While the lack of services and resources for adults with autism is troubling, it also presents a significant opportunity for behavioral health providers. As the study points out, the demand for autism services among adults is rapidly increasing, but the supply is not meeting this demand. There is a growing need for specialized services tailored to adults with autism, ranging from life skills training and employment assistance to mental health support and social services. This gap in service provision has opened up a lucrative space for providers to step in and address these unmet needs.
Investors are already beginning to take notice. The autism market has been one of the fastest-growing segments in the behavioral health industry, commanding the highest multiples in all behavioral health transactions. According to M&A advisory firm Mertz Taggart, autism-related deals accounted for nearly half of all behavioral health transactions in the third quarter of 2019. This reflects both the financial potential and the urgent need for services in the adult autism space.
Behavioral health providers who are willing to create programs and services designed specifically for adults with autism are well-positioned to meet a critical demand. These services could include vocational training programs, housing assistance, social skills training, mental health support, and therapeutic interventions that cater to the unique challenges faced by adults on the spectrum.
Federal Legislation: The Autism CARES Act of 2019
On a broader level, there have been some positive legislative developments aimed at improving autism services for adults. In September 2019, President Donald Trump signed the Autism CARES Act of 2019 into law, authorizing more than $1.8 billion in federal funding for autism programs over the next five years. While much of the funding focuses on expanding research and services for children, the new iteration of the bill includes provisions that specifically address the needs of adults with autism for the first time in history.
Previously, federal autism programs and funding were largely focused on children aged 21 and younger. Adults with autism were often left out of the conversation, with little research and few resources dedicated to their care. The new Autism CARES Act aims to change that by mandating that federal programs and research efforts include adults with autism across the lifespan. Advocates for autism care, such as Autism Speaks, hailed the move as a significant victory for adults with autism, who have long been underserved by federal autism initiatives.
“This legislation ensures sustained funding to better support people with autism across the spectrum and at every stage of life,” said Angela Geiger, President and CEO of Autism Speaks. The inclusion of adults in the new bill is seen as an important step forward, as it acknowledges the lifelong nature of autism and the need for continued support throughout the lifespan.
However, critics have raised concerns that, while the inclusion of adults in the legislation is a positive step, it does not necessarily mean that adults will immediately see improved access to services. Molly Candon, a research assistant professor of psychiatry at the University of Pennsylvania, pointed out that the Autism CARES Act does not allocate specific funds to improve autism services for adults. Without additional funding dedicated to adult services, the bill’s provisions for research and service expansion may not result in tangible improvements for the adult autism population.
Candon argued, “Without the ability to improve services delivery, there’s no point in doing the research.” In other words, the federal government’s commitment to autism research is valuable, but unless there are concrete measures to improve service delivery and accessibility for adults with autism, the positive effects of the legislation may be limited.
A Path Forward: Bridging the Gap in Autism Services
The gaps in autism services for adults are substantial, but they also represent an opportunity for growth, innovation, and advocacy. Behavioral health providers, investors, and policymakers must collaborate to create solutions that meet the unique needs of adults with autism. This includes developing adult-specific care models, expanding research on autism in adulthood, and ensuring that funding is directed toward enhancing service delivery.
The Case Western Reserve University study has highlighted the significant challenges faced by adults with autism, but it has also illuminated an opportunity to make a real difference in the lives of individuals on the spectrum. With the right investments, infrastructure, and policy support, we can create a future in which adults with autism have access to the services and resources they need to thrive. The legislative support offered by the Autism CARES Act is an encouraging start, but there is still much work to be done to ensure that adults with autism receive the care they deserve.
By prioritizing the needs of adults with autism and committing to improved service delivery, we can ensure that autism services are truly available for individuals at every stage of life.
