POMONA, Calif. – College of Optometry Founding Dean Elizabeth Hoppe’s son was diagnosed with autism spectrum disorder at the relatively late age of 11. He went undiagnosed for many years, an ordeal that included many dead ends and wrong turns.
“Going through that process of getting the diagnosis, and then accessing resources and finding treatment, has been extremely difficult and stressful for our family,” Hoppe said. “It’s been just unbelievable that nobody was able to go the extra mile to put it all together. You have to navigate that system yourself. Nobody is going to advocate for your child the way that you will.
“When we were in the diagnostic process, we didn’t know what was going on. We just knew something was wrong. But we weren’t getting any help. We were seeking help from many different health care providers, and it wasn’t coming together in a synergistic way that made sense.”
Hoppe and her colleagues at Western University of Health Sciences are addressing this fragmented approach to autism by forming a new organization on campus, FACE: Faculty for Autism Collaboration and Education. Website: http://www.westernu.edu/face.
The goal of this interprofessional team of educators, clinicians and researchers is to promote integrated perspectives, activities, and resources that serve to enhance the lives of individuals with ASD and their significant others, to help optimize function and promote the highest possible quality of life.
The impetus for starting FACE was the 2nd Dr. Robert L. Austin Endowed Lectureship, held at WesternU on April 5, 2011, which featured a discussion on early detection, effective multidisciplinary treatment, and possible preventative measures for autism.
“It generated tremendous interest and the opportunity to bring together people from across campus who had a common interest in autism, whether personal or professional — and many of us have both,” said FACE Chair Gail Singer-Chang, PsyD, MA, MS, Assistant Dean, Interdisciplinary Professional Education, Chair of the Department of Social Medicine and Healthcare Leadership, and Director, Institute for Medical Educators.
“We’re coming together to figure out what we can do as an interprofessional health sciences university,” she said. “We feel we have a really unique culture here at WesternU that lends itself to being able to integrate very diverse perspectives, and if there’s anything that needs that integration, it’s autism.”
FACE brings together educators, researchers and clinicians from WesternU’s nine colleges so they have a better understanding of each other’s work. One of FACE’s goals is for researchers to see what a clinical assessment looks like, as opposed to it being an abstract idea. In return, clinicians gain a better understanding of how and why researchers are coming up with their research questions, Singer-Chang said.
WesternU has the advantage of having several disciplines on one campus, said Graduate College of Biomedical Sciences Dean Michel Baudry, PhD, who is conducting autism-related research.
“The fact that we have here at WesternU all these different professional schools indeed can bring together people with different perspectives and different expertise to try to better understand the overall features of the disorders,” he said. “Here we have the advantage of being relatively small, so we can really facilitate dialogue, exchanges and the opportunities to meet and to talk.”
The first major project by FACE is a show called “Autism Intersection,” which debuts today, Jan. 10, 2013, on the Autism Channel, http://theautismchannel.tv/. The show depicts WesternU faculty members interacting with children with autism and problem-solving in a multidisciplinary way in the moment.
“We’re hoping in the diversity of what we’ve put together and in the critical thinking process as we work collaboratively, everyone will see something that will resonate with them,” said FACE Co-Chair Dee Schilling, PT, PhD, Chair of the Department of Physical Therapy Education in the College of Allied Health Professions. “Not everything will resonate, but maybe one little thing, and they will say, ‘That’s my child. That’s my life. That’s me.’”
They videotaped interactions with six children between the ages of 5 and 16 across the autism spectrum, from high-functioning children to those who are nonverbal. Department of Physical Therapy Assistant Professor and FACE Senior Advisor Mary Hudson-McKinney’s son, Matthew McKinney, participated in a videotaped collaborative session that involved physical therapy and neuro-optometry. Matthew discovered that sitting on a ball helped him focus, and this video could help others who view it.
“A parent could watch and say, ‘That is something my child is having difficulty with. I didn’t even think of accessing this idea. I’m going to try that,’” Hudson-McKinney said. “It provides a little bit more fodder for the individual with autism and the families to come up with other strategies for the child. It may also act as fodder for clinicians, individuals that are working with children with autism, or older individuals with autism, in terms of ideas and strategies they may not have thought of.”
For children with autism, each day is a new day. What worked yesterday may not work today, Schilling said. FACE is a group of individuals who have experienced that frustration and the realization that things have to be done differently.
“We have to become a community. It takes a village to raise a child with autism and to do it well,” she said. “We live our lives going to these siloed individuals who continue to tell us what our children can’t do. And what we’re all really looking for is for that collective group that instead points out what our children can do, and shows them all the possibilities.
“That’s what this group is about. We are really about possibilities,” Schilling said. “We are saying, ‘This is a struggle today, but look at how brilliant they are at this.’ It’s really finding the uniqueness, the specialness, and the gifts that each one of these children brings that have been left untapped because we’ve gotten caught up in what they can’t do.”
Many of the professionals on the front line are not well-educated about autism, Singer-Chang said.
“If you don’t have people who really understand the fickle nature of autism, you can get all kinds of misinformation that sends you down paths that don’t help your child at all. So the purpose of coming together for a show on the Autism Channel is to be able to translate all of this complicated, fragmented stuff that’s going on around autism, and to have it start making sense to people. As professionals, that’s part of our responsibility,” she said.
“The Autism Channel producers know that families with autism don’t have time or money, which is one of the reasons they created this resource. We need to make things easy and accessible. Most families who have kids have done everything, every kind of therapy. That’s why I think with the network we have here, the types of professionals we have here, we bring a more encompassed understanding to the picture.
“It’s time to do something about it. Let’s come together to form a unique place, what we can do, what piece of the puzzle we can add that might help people in the autism community lead more functional lives.”
When Dean Hoppe explained her family’s ordeal to a colleague, the colleague responded by saying, “Isn’t it perfect?”
Her colleague explained, “Isn’t it perfect, because somebody in your position can make a difference, not only for your child, but for other children as well.”
Hoppe and FACE have taken this to heart.
“This is an opportunity to be able to say these are all the things that are wrong with what happened to my family, and how can we make a difference for other people,” Hoppe said. “Being at WesternU, with that interprofessional perspective, it is perfect. It is the perfect place to be to have those kinds of conversations, and to be able to make a difference moving forward for the people who will be the health care providers of the future.”