The challenge of aging with autism

WE HAVE MADE SUBSTANTIAL PROGRESS in diagnosing, supporting, and educating children and teens with autism, but we are falling behind when it comes to addressing the challenges faced by the rapidly growing number of older Americans with autism.

The relative newness of the autism diagnosis – first identified in the 1940s but not regularly diagnosed until the 1970s – has meant that too little research has been done on the health, psychological, and social implications of growing older with autism. We need to dramatically step up research to understand how the 6-year-old or 16-year-old with autism may change when he or she becomes the 66-year-old, 76-year-old, or older.

Older Americans with autism are often misdiagnosed; that alone can lead to mismatched services and care. What little research we do have on how autism changes with age indicates some difficulties may grow more pronounced over the decades – and some strengths may also grow more pronounced. In other words, the specific collection of strengths and challenges belonging to any one individual with autism as he or she grows older are simply unpredictable and unknown.

While stepped-up research is needed, we must also start to think about and invest in ways to care collectively for our aging population of individuals with autism. The greatest challenge for millions of parents who are the primary caretakers for their children with autism is the persistent concern about what will happen as they themselves age.  Who will step in and ensure their adult child can live out his or her potential and participate fully in the community?  Today, one out of 59 American 8-year-olds is diagnosed with autism and 80 percent will continue to live at home as adults. We need to take full responsibility as a society to care for this demographic group as it ages, but today the vast majority of public resources and benefits for individuals with autism end by age 22.

Aging out of parental care raises a host of side issues for which we urgently need to develop solutions. Consider, for instance, transportation. Older parents may no longer be able to drive their adult children to activities or appointments. Those in rural areas or for those with autism who find public transportation difficult to navigate will also need access to other forms of transportation in order to prevent increased isolation. Exciting innovations in transportation are emerging all around us and we should focus attention on how these might benefit older adults with autism.

We also need to start thinking systematically about how we invite older citizens with autism to participate in our community on a regular basis – in real recreation that challenges the mind and keeps the body active, in volunteer opportunities of special interest, and through full participation at houses of worship. Keeping autistic adults involved in the community helps prevent another common problem that is not often recognized or reported: assault and abuse. Research shows that regular interaction with a variety of community members is the best way to ensure autistic adults remain safe at every age.

The fastest growing sector of the labor market is personal home care attendants – a reality that follows the aging of the population we all will live through over the next two decades. Because home care is part of the solution to the challenge of aging out of parental care, we need to think more systematically about how we train and prepare homecare workers to assist those with autism and related developmental disabilities to thrive throughout their lifespan.

We also need to do a better job of preparing medical professionals, nursing home staff, and gerontologists to care for residents and patients living with autism. It is going to take a well-trained workforce to understand the ramifications of autism in older adults, but also to track medical histories of crucial issues like chronic disease and medication. Too often, for instance, autistic individuals are prescribed multiple medications without sufficient tracking of potential interactions with other medications. Methods are already available for preventing these instances of polypharmacy, and true innovators could figure out how to apply them to the autism community.

These challenges seem daunting. But innovation, technology, creativity, and collective attention to the issues will make a significant difference in our ability to empower older Americans with autism to live the lives they want. That’s why Northeast Arc and the Nancy Lurie Marks Family Foundation are partnering for Arc Tank 3.0 – a competition that funds pioneering and positively disruptive ideas to enhance the lives of persons with disabilities.

The Arc Tank has had tremendous success over the past two years. We’re excited to review this year’s submissions and to fund creative solutions to help address the challenges facing older individuals with autism.

The Arc Tank finalists will be judged on November 19 at an event open to the public at the John F. Kennedy Presidential Library and Museum. For more information about Arc Tank 3.0, please visit https://ne-arc.org/arctank/

Jo Ann Simons is the CEO of Northeast Arc and Elizabeth Zwick is the director of community relations at the Nancy Lurie Marks Family Foundation.