“It’s past time for the Americans with Disabilities Act to recognize, with specific guidelines, invisible disabilities.”
While the Americans with Disabilities Act has changed the lives of people with physical disabilities since its passage 29 years ago, it has fallen short in addressing invisible conditions like autism spectrum disorder, ADHD and Tourette syndrome.
Dr. Wendy Ross, director of the Center for Autism and Neurodiversity at Jefferson Health, is using her experience to change that dynamic at Jefferson Health—Center City. Throughout her career, she has collaborated with organizations around the world to pioneer making common activities and social settings accessible to neurodiverse individuals, including those living with autism spectrum disorders.
We caught up with her to discuss her efforts at Jefferson.
Can you start by giving us an overview of the Center for Autism and Neurodiversity?
I want to start by saying that Dr. [Stephen] Klasko, [CEO of Jefferson Health], is such an out-of-the-box person in terms of how he thinks about healthcare. I feel very lucky that he saw potential in the work that we do, understood the need for it and has allowed us to work on implementing it.
The ADA includes those on the autism spectrum, but there are no guidelines for them. Dr. Klasko not only invested in our program financially, but he also knew that we would need a way to measure outcomes in order to create best practices that have the capacity to drive policy. Our goal for the program is to create a model, measure outcomes and create best practices as to how the ADA applies to neurodiverse individuals. We then hope to apply it across the healthcare system and community settings everywhere.
When we talk about neurodiversity, it really means anybody who thinks or interacts differently. This could be the aging population, those with learning disabilities or psychological disorders, or someone having a bad day.
Do we know what this model looks like yet?
Yes! Our model has several components and moving parts. First, and perhaps most importantly, we always ask those affected by neurodiversity (individuals and their family members) what matters to them, either by a focus group or by a survey, and then involve them in every step of our process.
We also have an educational component, where we support and prepare individuals to interact in community settings. We implement this bi-directionally, so we prepare the community as well as the individuals. With a 30-minute training session, we can develop a base of knowledge, and provide strategies for community members who may not encounter neurodiverse individuals every day. We tailor the sessions to the groups, creating an exchange of information and understanding, accommodations and understanding.
Jefferson Center for Autism and Neurodiversity provides supported experiences to identify gaps in what’s needed to promote independence in the community. Our program is multi-disciplinary and multi-layered in that we are creating both processes and alterations in the physical design of the built environment to facilitate inclusion.
How does this holistic approach benefit those who don’t have ASD or who aren’t neurodiverse?
One of our lead consultants, Jennifer O’Toole, says that we are all on the “human spectrum.” There is not one of us that does not benefit from the strategies we espouse, whether it be extra sensitivity, extra patience, or less judgment. There is also something very empowering about enabling someone to do something they had not thought possible. We provide that opportunity both to the community at large and to those specifically affected by autism. When we talk about neurodiversity, it really means anybody who thinks or interacts differently. This could be the aging population, those with learning disabilities or psychological disorders, or someone having a bad day.
What’s your opinion on sensory rooms and how they’re being used?
What concerns me about sensory rooms is that they’re being treated like destinations. It’s one thing to have access to a place where you feel comfortable, but these rooms can shortchange the need for other options because they’re segregated and, many times, the only choice that an individual has to take a sensory break.
The sensory room isn’t a touchdown. It’s more like a first down. It’s not that I have a problem with the concept of the sensory room, I actually think that its conception marked an important milestone in a sense. But it should not be the only solution for the community as a whole. Autism is a spectrum, and there should be a spectrum of options for engaging in society.
What have you learned from this program—and your career—that you think everyone should know?
We should not underestimate the joy of helping someone exceed their own expectations. I am not the only person who loves that narrative and wants to be a part of it. Far from it, in fact. There are so many ways that this work helps everybody, not just those who need the support. Jefferson is such a special place as its values sincerely drive all that happens … embracing diversity, thinking innovatively, and doing the right thing. I am excited and energized by what we can achieve together at Jefferson.
The Jefferson Center for Autism and Neurodiversity provides Visual Stories to help patients with Autism understand and prepare for activities that they may come in contact with on a day-to-day basis, including why seeing a doctor is important and a visual teaching guide on explaining the coronavirus.