“Excelente!” exclaims 12-year-old Xander Trinkner, grey eyes shining behind glasses, sandy-brown hair tousled. His latest iPad mission, protecting the world from droves of alien invaders, is a success.
Dressed in a grey-and-green Packers t-shirt and a pair of jeans, Xander could be any 12-year old. But his journey so far has been anything but typical.
“He had trauma when he was an infant, so he has always been delayed in hitting developmental milestones,” says Connie Trinkner, his mother. Xander had trouble with school and Connie relates being called in several times over the years because he was having a meltdown. “He was being treated for ADHD (attention deficit-hyperactivity disorder) but not all his symptoms matched that diagnosis.”
In August 2015, Connie and Xander visited the Autism and Developmental Disabilities Clinic at the Waisman Center, where Xander was diagnosed with autism spectrum disorder or ASD.
“It was pure relief to get the diagnosis,” says Connie. “I now have access to a support system and people who know how to help Xander and me. It’s great to not feel alone and instead have a whole world of people who understand what we are going through and can help.”
To help is exactly why the clinic exists, says Lindsay McCary, clinic director and Waisman Center researcher. “All of us have a passion for working with individuals with ASD or developmental disabilities, and helping them grow and achieve what they are capable of.”
According to McCary, the clinic members specialize in a number of different disciplines but work together as a team.
“We have developmental pediatricians, psychologists, speech-language pathologists, occupational therapists, social workers, nurse practitioners, psychiatrists, dieticians and audiologists,” she says.
Each member of the clinic team contributes to a patient’s treatment plan. Developmental pediatricians Christina Iyama-Kurtycz and Maria Stanley, for example, take the lead in managing medical and behavioral therapy. Nurse practitioner Susan Heighway often works with families as individuals with ASD transition through puberty and their teenage years.
This teamwork is critical to maintain a high level of service, says McCary. “We may not always see a patient at the same time, but we have built into our schedules opportunities to talk with other team members so that we get an interdisciplinary perspective on each patient.”
The extensive repertoire of skills and experiences that each clinic team member brings is also needed to help families navigate the complex emotional and social systems landscapes after diagnosis.
“For example, when a child is diagnosed with ASD, there are differences in the types of Medicaid that they may be eligible for and that depends on the specific disability and the family’s income and so on,” says McCary. “Then there are different treatment services that families have to learn about and make decisions about what’s best for their child and what’s best for their family, not to mention the complicated process of navigating the school system.”
Clinic team members spend time talking to parents about the diagnosis, what treatments options are available and how to get the support their children might need.
That support has been welcome for Connie and Xander. “When something isn’t working at school for Xander, for example, the folks at the clinic know how to help you navigate and appropriately deal with what can be very challenging situations,” says Connie.
Since Xander’s diagnosis several months ago, Connie has noticed gradual but concrete changes in how Xander interacts with others, at home and outside.
“I feel as if we are finally going in the right direction,” says Connie. “With the new interventions and increased support, Xander is now getting more independent and is able to make it through full days at school.”
And save the world from electronic aliens.