It’s past time for the Americans with Disabilities Act to recognize, in legislation, invisible disabilities.
For 29 years, the ADA has required public spaces to accommodate access for people with physical disabilities — from wheelchair ramps and specialized parking to elevators and accessible bathrooms. Yet the ADA falls terribly short in addressing invisible disabilities, such as autism spectrum disorder and other neurodiverse conditions.
And just as the physical changes required by the ADA helped everyone — such as parents with strollers — legislation to help people with neurodiverse conditions travel, go to school, work and seek medical care will help all of us create a better society.
A regulatory refresh is needed to meet the needs of these populations. Although researchers continue each day to identify causes and find a cure for autism spectrum disorder, we are equally interested in creating a better care environment: one that is welcoming and more accessible.
These disorders pose social challenges; therefore, they need to be addressed in society. If Congress acts on expanding the ADA to afford protections to the ASD community, we want the research to be in place so businesses and other health care providers know which changes must be made to ensure a more welcoming environment.
In fact, we believe we can design new environments and strategies to accommodate the sensory experiences of people with ASD — we’re doing that with our medical students as part of our design thinking curriculum. While some facilities are using only separate waiting areas for patients with ASD, we will be designing waiting spaces that are both sensory friendly and welcoming to all.
Our goal is a new universal design for public spaces.
And in fact, we are reimagining the ramp. Just as physical ramps were designed for wheelchairs but support others, such as those with walkers and moms with strollers, our ramps will be designed for those with ASD and beyond. This is key to our work at Jefferson’s new Center for Autism and Neurodiversity.
In health care, we see many individuals who require this special care and consideration. Unfortunately, in too many circumstances, those qualities are lost as patients “age out” of pediatrics.
Many of these individuals fall off a cliff medically as they try to find providers who understand their unique needs. For them, a visit to a primary care physician not properly trained can be especially distressing. Equally distressing are primary care offices that do not adequately account for their heightened sensory experiences.
While we’ve come a long way to make the world more welcoming to those with physical disabilities over the past 30 years, we have a long way to go to make it more welcoming to those with invisible ones. Regulatory change is sorely needed to make communities more welcoming for individuals with ASD. In the interim, research will continue so we can meet these individuals’ needs in the doctor’s office and elsewhere.
The cost to our patients and society is grave. The opportunity is meaningful — a better society for all of us.
Stephen K. Klasko, MD, MBA, is the president of Philadelphia-based Thomas Jefferson University and chief executive officer of Jefferson Health.
Wendy Ross, MD, is a behavioral pediatrician and the director of Jefferson Health’s new Center of Autism and Neurodiversity.
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