Jessica Buterbaugh, Penn State News
Nobody ever thinks that they'll have a child with autism. Yet, according to the National Autism Association, the number of children affected by the disorder has increased steadily in the last 20 years. Today, one in 68 children are diagnosed with autism.
Unexpected diagnoses leave parents searching for resources and treatment options to help their child. While this can be stressful for any family, military families who have children with autism face unique challenges.
"Military families move three to five times more than other families," said Lt. Col. Eric Flake, a developmental pediatrician for the U.S. Air Force. "It is not uncommon for us to diagnose a child with autism weeks before families move to another base."
The constant moves make it difficult for parents of children with autism to locate effective treatment programs and early intervention services. Additionally, Flake said that a number of families may be stationed abroad where resources are limited and they are separated from extended family and support systems.
Recognizing this as a real problem for military families, Flake's colleague, Scott Aikens, a developmental pediatrician working with the U.S. Navy in Europe, reached out to Penn State's Clearinghouse for Military Family Readiness for help.
"These families had children that were being identified as having autism and then they were faced with the very difficult decision about whether to remain in Europe and not really have access to services that could help them with their child, or return to the United States," said Cristin Hall, assistant professor of school psychology and faculty affiliate for the Clearinghouse. "So, we were asked to develop programming that could help parents make better choices about what they decide to do in these types of circumstances."
The result was a collaborative, three-tier program known as TeleConsult.
Learning and researchCreated as a consultation transitional care program, TeleConsult is a pilot research program that provides military families with guidance and information regarding their child's autism diagnosis. It also allows Hall to study how to provide services to families from a remote location using assisted technology and has served as a way to provide training for selected students enrolled in Penn State's school psychology graduate program.
Advanced doctoral students serve as consultants and hold virtual sessions with families on a weekly basis. Once a family joins the project, they complete an intake interview with an assigned consultant and complete an Introduction to Autism online learning module.
"We work primarily with families who have recently received a diagnosis of autism, usually within the past year although the program has expanded to include 'veteran' families who received the diagnosis years ago who still need answers," Hall said. "We ask them to complete a learning module so that we are on the same page in terms of what autism is and basic terminology and language."
The module, which provides information from the latest research regarding autism, also goes over common myths and questions about the developmental disability. Then, consultants observe the parent and child complete simple interaction tasks together such as blowing bubbles -- all via an online tool known as Cloud Visit.
"That is my favorite part," said Megan Runion, a doctoral student in the school psychology program and a TeleConsult consultant. "We actually get to observe the parent-child interaction and see what that relationship looks like and how it functions. It's not something you normally get to see as a school psychologist working in a school setting."
While Runion and Rebecca Bertuccio, another student consultant, observe their clients, they simultaneously are supervised by either Hall or Erica Culler, a research and evaluation scientist for the Clearinghouse, licensed psychologist and certified school psychologist who is the co-principal investigator on the project. The sessions also are recorded so the consultants and their supervisors can view the sessions later to provide feedback and analyses.
"After we gather all the information and complete the observation, we have a feedback session where we discuss different areas with the client," Runion said. Consultants cover areas such as family functioning, child symptoms, parent stress and coping.
"Based on the information we gather, we set goals and make suggestions for the client and provide a menu of options," Bertuccio said. "The menu is different for each family because each family has a different set of needs and their experiences are different. Some parents, for example, may feel that they need help managing their stress or trying to figure out how to manage their child's behavior. Some might need to learn about the different treatment options that are available."
Runion said once families' needs and goals are established, they complete additional online learning modules based on those specific needs. "Afterward, we talk through it with them,'' she said, adding that the sessions last between one and two hours, depending on the client.
When TeleConsult was first established in 2014, Hall anticipated that her team of researchers and consultants would provide families with services for up to six months. However, because each client has different experiences, goals and circumstances, services may be provided for up to one year in some cases.
"A lot depends on where families are at in the diagnostic process and their current living situation," Hall said, explaining that the team has worked with a family that experienced an unexpected move that caused TeleConsult to provide services for a longer period of time.
"When something like that happens, we have to revisit the family's needs and, most likely, goals are reevaluated," she said.
Consulting versus counselingWhat makes TeleConsult unique is the model it follows. While many look to psychologists to provide therapy to parents or children, that is not the purpose of TeleConsult.
"We don't necessarily counsel families -- we provide guidance," Bertuccio said, explaining that consultants are trained to follow a motivational interviewing and behavioral consultation model that focuses on goal setting and talking to a family about realistic accomplishments.
However, according to the consultants, there can be a gray area between consulting and counseling.
"We listen to families and talk with them about their needs and experiences, much like a counselor would do," Runion said. "But the key is that we don't tell clients what they need to do. Instead, we work with them to locate information and then we help them understand what that information means and how it may or may not be beneficial for their family's particular situation and their child's goals."
Hall also acknowledged the fine line that separates counseling and consultation.
"When a family has a child who is diagnosed with autism, many parents go through a grieving process and are in search of therapy," she said. "Not therapy to fix their child or to make autism go away, but therapy to help them cope with how the diagnosis affects their day-to-day life, therapy to help them hold on to hope of some kind. And, there are ways in which we can provide information to families about research and evidence that doesn't have to negate their hope or negate their need for answers."
That is why Hall wanted TeleConsult to be different.
"With TeleConsult, we're meeting with families on a weekly basis for a period of weeks or months and we're building a more trusting relationship with them," Hall said, noting that most school psychologists rarely get the opportunity to work in a family setting.
"When the military first approached us, the issue was that parents were not informed and they just didn't know where to go to get the information they needed to help their child and family," Hall said, adding that parents stationed abroad face the additional challenge of not being able to find resources in their native language. "So that is our primary purpose -- to educate these families and help them find information that is accurate and evidence-based."
Every decision made regarding a child's treatment is made by the parent, not the consultants. Consultants answer questions, provide information and help evaluate their family's progress based on the established goals.
Responsibility to serveCurrently, TeleConsult provides services to 10 U.S. military families based at locations throughout the world, including Germany, England, Cuba and Alaska. Consultations will continue through next fall as Hall and her team of researchers collect data and test the TeleConsult model.
"What we're really looking at as a group across all projects in the TeleSchool Psychology team, is how as professionals we can leverage existing online platforms and technologies to increase the delivery of evidence-based practice and help people," Hall said. TeleConsult is just one technology-related project under TeleSchool Psychology, a group of faculty and student researchers who explore the use of technology-assisted intervention, according to Hall.
"When people have certain talents and skills, they have a responsibility to help people," she said. "The TeleSchool Psychology group is well-suited to be in a position to think about ways to utilize teleconsultation tools and online learning tools to provide services to the community at low or no cost, while simultaneously providing training for our students and expose them to unique experiences."
It is those unique experiences for which Runion and Bertuccio are grateful.
"It's an awesome opportunity," Runion said of being able to be a part of TeleConsult. "As school psychologists, we do have frequent contact with parents but we're positioned in a school setting so we primarily are dealing with school personnel and students. Being able to work directly with parents has opened us up to new experiences that many other school psychology programs don't have."
Bertuccio concurred that TeleConsult has been an amazing learning experience.
"I've learned so much about everything," she said. "TeleConsult has shown me all the work that parents put into helping their child and advocating for their child. We don't normally get to see that side of things. It's just nice to get that external experience aside from our practicum credits and our classes."
But it's not just military families and students who are happy with TeleConsult.
"I really like how this project is customizable to meet the needs of the family while still having a set curriculum that is directed toward empowering the families to be strong self-advocates," Flake said. "Every family and child with autism is different and although they need to learn foundational principles to help them live in the new normal of having a child with autism, all families learn differently."
"Penn State has had a long-standing relationship with caring for military families and soldiers, and their interest in supporting the military has had a lasting impact on the wellness of military service members and their families," Flake said.