By Karen Lindgren, Ph.D., Chief Clinical Officer, Bancroft
As a clinical psychologist who has spent decades working with individuals with autism and intellectual and developmental disabilities (I/DD), I’ve seen firsthand how our systems often overlook one critical reality: people with I/DD grow older, just like everyone else.
Many individuals with autism live fully independent lives. But there is a significant segment of the population, particularly those with complex needs or limited communication abilities, who require lifelong care. Today, more than 1.5 million adults with I/DD in the U.S. are over the age of 50. While exact numbers are hard to pin down, it’s estimated that nearly 30% of them also have autism. And yet, we still haven’t done nearly enough to understand or support what aging looks like for this community.
This is deeply personal work for me. As Chief Clinical Officer at Bancroft, I’m responsible for ensuring the people we support have access to high-quality, research-based care as they age. Through our Judith B. Flicker Residences Program, we’ve developed a model specifically designed to support older adults with autism and I/DD. Our goal is simple but urgent: create environments that promote comfort, engagement, dignity, and purpose throughout the aging process.
But the truth is, we can’t do this work alone.
We’re partnering with health systems, universities, and research institutions to expand our understanding. For example, we’re working with St. Joseph’s University on a long-term pilot study to explore whether AI and robotics can help provide stimulation and support for older adults with autism, many of whom need consistent cognitive engagement as they age.
This kind of collaboration is essential, especially when you consider how many older adults with autism were diagnosed later in life, or sometimes, not at all. Some are part of a “lost generation” who grew up without access to interventions or support. Their caregivers – often aging parents – are now facing their own health concerns. And too often, there’s no clear plan for what comes next.
So how do we move forward?
First: We Learn
We must broaden our understanding of aging beyond the neurotypical lens. Most aging research focuses on middle-class, generally healthy adults. But that is not an accurate representation of our aging population. We need to actively involve autistic individuals, along with their families and caregivers, in conversations about what truly matters: Is it connection? Safety? Routine? Health?
We also need to look at challenges in the healthcare system for neurodiverse individuals, from inaccessible care environments to a lack of specialized providers. And we must marry that knowledge with broader trends in housing, workforce shortages, and long-term care planning so we can anticipate and prevent future challenges.
Second: We Design, Intelligently
This means investing in solutions that work today, like smart home technologies and remote supports, while also exploring what might work tomorrow.. Could AI-powered companions reduce isolation? Could shared or intergenerational living communities offer more holistic care? Let’s study these models with both curiosity and caution, and share what we learn widely.
Third: We Advocate
This is where we have real opportunity. With the right coalition of policy leaders, nonprofit partners, researchers, families and patients, we can push for meaningful investment in systems that recognize and respond to the full spectrum of aging experiences. That means expanding funding, reshaping program models, and centering neurodiverse voices in every conversation about aging and care.
This work isn’t easy, and it isn’t quick. But it’s necessary. And it’s time.
We all deserve to age with dignity. Let’s make sure that includes every individual, no matter their ability.