By Emily Leclerc, Science Writer, Waisman Center
Note: Lizzie Oster feels strongly about being referred to as an autistic person rather than a person with autism. The language in this piece reflects that preference.
Elizabeth “Lizzie” Oster was 16 when she was diagnosed with autism. Most autistic people are diagnosed young, typically between the ages of four and five according to the Centers for Disease Control and Prevention, and can start treatment and therapy early. For Lizzie, this wasn’t how it went. It took years, a slew of misdiagnoses and many ineffectual therapists before the idea of autism was brought to the table. Lizzie endured physicians that didn’t understand her, a brief inpatient hospital stay and nearly impossible communication with her parents. All of those years that Lizzie went without a diagnosis meant huge amounts of time lost where she and her family could have benefitted from treatment.
For Lizzie and her family, her autism diagnosis was a relief. “It was really, really difficult before we had the diagnosis,” Rick Oster, Lizzie’s dad, says. A diagnosis meant that they could begin to understand how Lizzie’s brain works, learn from therapy with autism specialists and finally figure out how to communicate and support one another. This long and difficult journey then brought the Oster family to the Waisman Center with the hope that the center’s Autism Treatment Programs would be a good fit for Lizzie. “We had gone other places and hadn’t gotten good results,” Rick says. At this point in their journey, the Oster family really needed a win.
The family began therapy with Madeline Barger, MS, LMFT, BCBA, CST, the Waisman Center’s Autism Treatment Programs’ lead behavior analyst, a Wisconsin licensed behavior analyst, licensed marriage and family therapist and an AASECT certified sex therapist. Madeline’s treatment style immediately resonated with the family. “The difference we noticed immediately was the Waisman Center takes a more holistic family approach,” Michelle Oster, Lizzie’s mom, says. “With many of the previous therapies, Lizzie would just go off and we would have no idea what they were working on or what we could do to support her. Madeline and the Waisman Center really taught Rick and me about our family, how best we could support Lizzie and how we could understand her too.”
Michelle, Rick and Lizzie credit Madeline and the Waisman Center with saving their family. “Our one-on- one sessions [with Madeline] changed our whole family and our lives,” Rick says.
With the help of therapy and treatment with Madeline, Lizzie has done things she never thought she could. She always felt as though graduating high school was an impossible goal and now she is a sophomore in college. “I would have a mantra of I’m doomed,” Lizzie says. “I would genuinely repeat that for extended periods of time while rocking and being unable to cope.” Madeline helped to break some of those cycles for Lizzie and build in coping mechanisms that she can use to help her through life.
With Lizzie now in college and beginning the challenges of transitioning into adult life, Madeline thought Lizzie would be a good fit for the newly constructed autistic adult treatment series developed at the Waisman Center to support young adults through life transitions. Madeline is the lead provider for teens and adults in the Waisman Autism Treatment Programs. As such, Madeline launched this unique group treatment series specifically designed to help fill a gap in treatment for older autistic people.
“The reason we started with adults is based on a high community demand and clinical need. This 2021 group is specifically an adult women’s group as autistic women often report later in life diagnoses. Late diagnoses tend to lead to less effective treatment interventions and [the women] often come to us with pretty intense trauma histories prior to their autism diagnosis,” Madeline says. “We want to finally take those steps to support autistic adults with access to appropriate and autism-informed healthcare, which is really lacking in the community.”
As someone diagnosed late, Lizzie experienced firsthand this gap in autism treatment for young adults. Prior to coming to the Waisman Center, Lizzie did see an autism specialist but found her particularly unhelpful as her program was designed around treating autistic children. “She showed me resources to teach autistic people but it was really designed for autistic children,” Lizzie says. “It was horrible and kind of infantilizing as well.” One of Madeline’s goals with this group program is to help address the lack of support for autistic young adults.
Another of the group therapy program’s goals is to provide education and support around the skills needed to transition into adulthood. This goal led to the unique trimester design of the treatment series.
The year-long group therapy series is split into three different curriculums, each designed to address an important challenge of experiencing adulthood. “We utilize three different evidence-based programs in our adult group,” Madeline says. The first is Transitioning Together which is a psycho-education model specifically focused on adult transition. The Transitioning Together program was developed at the Waisman Center by Leann DaWalt, PhD, a senior scientist, Waisman investigator and director of the center’s University Center for Excellence in Developmental Disabilities. The program is based on more than 20 years of longitudinal research from the Lifespan Family Research Lab led by Marsha Mailick, PhD, emeritus vice chancellor for research and graduate education, at the Waisman Center.
The second is a customized group version of the UCLA PEERS® (Program for the Education and Enrichment of Relational Skills) program. The important and unique third trimester, called Advanced Adult Relationships, is specifically designed by Madeline Barger, who has rare and specialized training which allows her to provide systemic sexuality education and treatment to autistic people. This program allows individual group participants to meet their individual advanced adult relationship goals toward not only dating but also intimacy, partnering, and general sexuality education. According to Madeline, there is currently no other program like this in the United States.
Transitioning Together builds the basis for fostering self-efficacy, social engagement, and problem solving. The UCLA PEERS® program delves into the social skills needed such as initiating conversations and building and maintaining friendships. Advanced Adult Relationships is best delivered after the initial foundation of social relationships is built and targets skills needed to foster healthy adult relationships including dating and sexual intimacy. Each of these three programs are successfully run as standalone programs, but together form the year-long treatment series offered at the Waisman Center. And as Madeline works with the young adults, Alyssa Walsh, PhD, a licensed psychologist in the Autism Treatment Programs, runs a concurrent parent group to help teach parents the best ways to support their young adults. Sara Warner, PsyD, licensed psychologist, also joins Alyssa in running the parent group.
“For Transitioning Together, the goal of the parent group is to reduce family stress, build a sense of community and engage in family problem solving in a group context,” Alyssa says. “Then within the PEERS® program and the Advanced Adult Relationships curriculum, the goal is to talk about the same type of social skills that Madeline is discussing and having parents support their young adults in those areas.” The parents are taught how to help and support their children as their children learn to walk into adulthood.
The Oster Family says they have reaped enormous benefit from the autism group therapy series with one of the biggest benefits being a sense of belonging and community. “I think it’s cool because I haven’t been able to meet a lot of other autistic people other than sort of at a glance and never females,” Lizzie says. “It’s been really nice for me to meet some other autistic girls and see how they interact because I feel like sometimes watching someone else, you can recognize your behaviors in them.”
Rick and Michelle find great relief in the community the group therapy series has gathered around them. There is a peace in talking with other parents who simply understand the struggles of having an autistic child without Rick and Michelle needing to explain. “We are learning from the other parents as well. Having those shared resources and that forum to share, because all our girls are late diagnosed and are high functioning on the autism spectrum, is really helpful,” Michelle says. “Sometimes I am just too tired to explain and I don’t have to do that with the parents in group. They understand and that’s a good feeling.”
This is the first year this year-long autism group therapy series has run at the Waisman Center and Madeline and Alyssa are excited by the results they are seeing. Madeline and Alyssa’s unique combination of licensures, that allow them to provide both psychotherapy and behavioral therapy, is unusual in the autism treatment world. But, Madeline and Alyssa have found that being able to provide both services in a group setting
is uniquely benefitting their patients. “So far, our group members are already reporting decreased anxiety levels and they’re increasing their targeted participation goals. They’re talking more and sharing more,” Madeline says. “They report excitement at the possibility of cultivating new social skills toward creating and maintaining friendships and more intimate relationships. They’re all really invested in this.”
Madeline and Alyssa have big plans for the autism group therapy series. They want to build a larger and more robust training program around the group therapy series in order to cultivate more clinicians who can provide this type of therapy and boast the combination of licensures needed to do it. Madeline and Alyssa know that the unique construction of their programming offers something special and they want to make it available for many more autistic young adults who could benefit from it.
“At the moment we are small in number at the Waisman Center Autism Treatment Programs specific to serving adults. But we are mighty in drive, experience and clinical skill,” Madeline says. “We hope over time to have more staff so that we can do more and build something bigger.”
For right now though, the group therapy series is more than the Oster family could have hoped for. “I don’t know what we would do without this young adult transition program,” Michelle says. “I kind of feel like you either get in somewhere early or you’re like Lizzie. You might get just enough help to get by and they you’re released into the wild. We’re so grateful that we could be a part of this program.”
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