Navigating Autism, Together

By Laura Hoxworth

By collaborating with experts, advocates and families in the Charlottesville community, autism researchers at UVA are growing the local support network while advancing cutting-edge research.

Fay Painter’s son Adam, 22, was diagnosed with autism at age 3. Now, as a family resource navigator, Painter provides support and guidance to local families with a new diagnosis. (Photo by Dan Addison, University Communications)

What do dentists, emergency responders and lifeguards have in common?

This summer, they’re all part of a growing community working together to advance autism research and services at the University of Virginia and in Charlottesville.

With rates of autism diagnoses on the rise, last year UVA announced a new interdisciplinary research initiative: Supporting Transformative Autism Research. Led by the Curry School of Education and Human Development in partnership with colleagues across UVA, STAR aims to improve the lives of individuals with autism through research, intervention and training.

According to the STAR team, one central goal sits at the center of those efforts: serving the local autism community.

“In order to be effective autism researchers, we really need to be responding to the community’s needs,” said Rose Nevill, research assistant professor and director of STAR’s Autism Research Core. “We’re not going to get very far by living in our ivory towers, and I think that’s a major focus and a major mission of STAR – to have a societal impact and a major community impact through our work, here and across the state.”

A large part of that work is STAR’s Family Navigation Team. When a family first receives an autism diagnosis, family navigators, employed by UVA, are there to provide emotional support, offer resources and help navigate the system of care.

Another critical piece of STAR’s community work is ongoing partnerships with local organizations like the Virginia Institute for Autism and the Charlottesville Region Autism Action Group.

Family Resource Navigator Fay Painter works at the center of these efforts. Painter, whose 22-year-old son was diagnosed with autism at 3 years old, has lived in Charlottesville since 1980. After years working as an executive with several voluntary health agencies, she recently transitioned to the STAR team. Her role focuses on the Charlottesville area in particular – coordinating outreach and educational programs, making connections with local organizations and collaborating on group programs.

"In order to be effective autism researchers, we really need to be responding to the community’s needs. We’re not going to get very far by living in our ivory towers, and I think that’s a major focus and a major mission of STAR – to have a societal impact and a major community impact through our work, here and across the state," said Rose Nevill, UVA research assistant professor and director of STAR’s Autism Research Core.

STAR is “really kind of groundbreaking at UVA,” Painter said. “It’s a collaboration that is across the University.” In addition to the Curry School, STAR collaborators come from the Health System, the School of Medicine, the Brain Institute, the Data Science Institute, the schools of Nursing and Architecture and the College of Arts & Sciences.

We caught up with the STAR team to learn about recent efforts to address a few of the most crucial needs in the local autism community: dentist visits, emergency response and water safety.

Dentist Visits

In one ongoing project, UVA post-doctoral research associate Kate Sadler and Curry professor Bill Therrien are collaborating with the Virginia Institute for Autism and Children’s Dentistry of Charlottesville, a local dental clinic that serves patients with special needs, to make trips to the dentist easier for individuals with autism and their families.

People with autism typically struggle with processing sensory information like bright lights and loud noises. Visits to the dentist are particularly challenging, making oral health a growing issue in the autism community.

To address this need, STAR’s project guides participants, recruited at the Virginia Institute for Autism, through simulated dentist visits that help them slowly build the skills they need for safe and uneventful dental checkups.

The simulation starts in a familiar location where participants feel comfortable: classrooms at the Virginia Institute for Autism. There, staff members gently lead them through the typical experiences and sensations of a trip to the dentist, like sitting in a reclining chair with an overhead light, allowing a doctor to use an electric toothbrush and suction tool and wearing a lead apron for X-rays. Eventually, participants work up to practicing their new skills in the clinical setting of Children’s Dentistry of Charlottesville.

“The Virginia Institute for Autism’s focus has always been to provide autism services that are based on the best science,” said the institute’s president, Ethan Long. “It’s very exciting now to be able to work with our partners at the Curry School and at Children’s Dentistry to perform crucial, front-line research that will be able to advance the science even further.”

In the short term, researchers hope an initial desensitization protocol can be developed that, when implemented, will equip participants with the skills needed for regular dental visits and a lifetime of good oral health. Ultimately, Therrien said the team hopes to develop, and validate, practical guidelines that anyone in the autism community can use.

“Hopefully the outcome of this project will be improved dental services for children in our community and via our dissemination of the research, new knowledge on how best to support individuals with autism during dental procedures that can be used by service providers around the world,” he said.

Emergency Response

Another major concern in the autism community concerns emergency responders. Because of co-occurring medical and mental health conditions and challenging behaviors, individuals with autism are nearly seven times more likely to encounter emergency responders than the general population.

An academic lecture on autism isn’t going to get them anywhere. They need to know, when they’re in a situation, ‘What are the practical steps that are most likely to help? - Tom Joyce, executive director of the Thomas Jefferson Emergency Medical Services Council]

“Oftentimes, responders who don’t have prior experience with autism don’t know what to look for,” Nevill said. On top of that, common elements of an emergency response can be a sensory nightmare. “The sirens, flashing lights, strangers stomping into your house and asking questions … leads to communication breakdown for a population that has inherent communication difficulties.”

Tom Joyce, executive director of the Thomas Jefferson Emergency Medical Services Council, organizes continuing education opportunities for the all-volunteer Charlottesville-Albemarle Rescue Squad. Joyce recognized that individuals with autism aren’t well-understood or served by traditional methods, so he reached out to the STAR team. Together, they organized a training session for about 30 emergency responders.

During the two-hour training, Nevill shared information about challenging behaviors that individuals with autism often exhibit, such as self-injury and wandering. She also discussed common medical conditions and sensory triggers, as well as signs – like I.D. bracelets and shoe tags – that can help responders identify individuals with autism.

Crucially, the group also reviewed strategies that responders can use during and after an incident. They discussed involving a caregiver in the response, making the situation more predictable and decreasing sensory triggers.

Lack of understanding causes a potential for an interaction to go badly, Joyce said – but focused, practical training can help. “An academic lecture on autism isn’t going to get them anywhere,” he said. “They need to know, when they’re in a situation, ‘What are the practical steps that are most likely to help?’”

Two parent representatives from the Charlottesville Regional Autism Advocacy Group also attended the training – including Brian Vig, who moved to Charlottesville in 2002 so his son could attend the Virginia Institute for Autism. Vig, whose son is non-verbal, believes that improving care for individuals with autism can’t happen without building a stronger understanding between the autism community and first responders.

“Educating people about what autism is and how the varying aspects of it affect families in the community is so important,” he said. “I think the more inclusive the Charlottesville and Virginia community is, the better off everyone will be and the more positive outcomes we’ll have.”

Water Safety

In addition to dentist visits and emergency response, drowning has been identified as the No. 2 cause of preventable death for individuals with autism.

“We know that people with autism tend to be more attracted to bodies of water,” Nevill said, “but they don’t always learn water safety skills or how to swim, because it’s a pretty challenging task to teach someone to swim who has communication challenges.”

But the academic research on water safety for individuals with autism remains sparse. So, with partners including the Virginia Institute for Autism, the Brooks Family YMCA and Fry’s Spring Beach Club, STAR is pursuing a study that will shed light on effective strategies for providing much-needed safety training.

This summer, the STAR team trained two swim instructors at the YMCA on an approach called behavioral skills training. Then, they recruited local participants from the Virginia Institute for Autism to attend a series of sessions teaching skills like exiting from a body of water, turning onto your back, floating and yelling for help. Data from the study will help researchers determine if a similar training could be standardized and widely disseminated.

YMCA Aquatics Director Daniel Furno, who coordinated scheduling and other logistics for the program, said he sees a real need for this type of program in the community. “I think it’s kind of pioneering, really,” he said. “From what I’ve seen, there’s not a lot of developed programs out there.”

Furno is hopeful the study’s results will inform the creation of their own, evidence-based safety programs in the future.

“From the Y’s standpoint, we hope that we can help benefit UVA by assisting in this study, and anything that can come back and benefit us is just a bonus,” he said. “To give kids an opportunity to get more specific training and programming that’s geared toward those kids on the spectrum, that’s something that’s really cool to be a part of.”

Building Community

Whether it’s dentist visits, water safety or emergency response, STAR’s work in the Charlottesville area all has a common underlying goal: building community. Vig said he’s optimistic that UVA’s increased involvement in the area will bring more positive attention to the needs and abilities of individuals with autism.

“As parents with autistic individuals living in the home, sometimes you get isolated,” he said. “The more we can get out and network in the community, the better off we’re all going to be.”

Earlier this summer, Painter, the family resource navigator, organized STAR’s first community focus group. The STAR team shared information about ongoing projects and asked for input on types of helpful opportunities from a group of roughly 50 attendees, including adults with autism and family members. Painter said the STAR team noted two main needs: increasing autism awareness in general and emergency responder training.

After the success of its first focus group, the STAR team plans to continue holding them on a regular basis. While there’s a long way to go, Painter said the growing interest in the Charlottesville area is encouraging. She knew they had touched on something truly powerful when many attendees lingered long after the focus group session ended, just to stay and talk.

“Both from my personal experience and my professional experience, and knowing this community, the things that families really need is to network with each other,” she said. “It just means so much to have families who are going through the same thing that you are.”