Special Friends Club hosts conference on the latest developments in autism study

The Special Friends Club of Notre Dame (ND) and Saint Mary’s (SMC) held its fifth annual Autism Conference on Wednesday, February 19, in front of a packed crowd at Carey Auditorium.  Special Friends Club pairs local children and young adults with autism spectrum disorders (ASD) with ND and SMC students who lead them in social activities about once a week.  The club also hosts social and educational events throughout the year for children in the program and their parents.

The theme of the conference was, “Understanding the transition to adulthood for individuals with autism spectrum disorder.”  After a welcome by club president Christina Mondi and an introduction by club advisor and Notre Dame professor Dr. Joshua Diehl, Julie Lounds Taylor took the stage for the keynote address.  Dr. Taylor is an Assistant Professor of Pediatrics and Special Education at Vanderbilt University, having received her PhD from Notre Dame in developmental psychology.

Dr. Julie Taylor, an Assistant Professor of Pediatrics and Special Education at Vanderbilt University.
Dr. Julie Taylor, an Assistant Professor of Pediatrics and Special Education at Vanderbilt University.

Taylor began by describing the three different areas of impairments for people with ASD: social interaction, communication and restrictive and repetitive behaviors.  ASD includes the varying levels of autism as well as Asperger’s Syndrome and similar disorders.  She also mentioned that research and media attention has generally focused on early childhood information about autism.  Studying autism for young adults and adults is something new to the field in the last ten years, so there is still much to be learned about it.

Taylor described how difficult the transition from high school to adulthood is for people with ASD because of a limited job market as well as unfamiliar social rules and norms in the workplace environment.  While research shows that symptoms of autism become less severe during high school, that improvement rate slows noticeably after graduation.  When compared to people with other diseases like speech and language disorders and intellectual disabilities, people with ASD are the most likely to be neither in college nor working a few years after high school, at 35 percent.

Taylor emphasized the need for more independence for people with autism in order for them to have fewer symptoms, better behavior and improved daily living.  She said that in an accommodating employment setting, these people “can really thrive.”

When asked what skills someone with autism should work on to prevent a drop-off in improvement, Taylor talked about the importance of a paid work experience in high school, household responsibilities, self-care and communication.  She added that in the job interview process, employers need to have a “candid conversation” with job candidates with autism and their families to see what specific needs must be fulfilled.

According to Taylor’s research, when asked what best signifies a transition to adulthood, ASD children and their parents say that the most important factors are having a job, being independent, moving out on their own, gaining skills and having peer relationships.  Taylor concluded that the most important thing to monitor is the “quality of life” of people with ASD.  This includes happiness, physical health, mental health and a sense of purpose.

Julianne Carson, a junior, is the secretary for Special Friends.  She became involved with the club at the start of her sophomore year after doing a Summer Service Learning Program where she worked with an eight-year-old with autism.

“I assisted him with daily activities in addition to being his playmate,” Carson said. “Following this incredibly rewarding experience, I wanted to continue working with autistic children back at Notre Dame.  I learned about Special Friends and the club seemed like a perfect fit for this vision.”

Carson added that one of the most important points from Dr. Taylor’s talk “was how with the increasing number of people diagnosed with autism entering adulthood, we need to start understanding this transition.  This area is starting to finally emerge to the forefront of autism research, but there is a lot to be done.”

Mondi, a senior, described how she got involved with this type of volunteering because of her brother.

“My brother, Matthew, was diagnosed with autism ten years ago, so this is a cause which is really close to my heart.  I heard about Special Friends as a freshman and the club’s two primary missions—to foster awareness of autism spectrum disorder (ASD) and to create connections for local children affected by ASD—really resonated with me,” Mondi explained.  “Socialization and communication difficulties are two of ASD’s defining deficits, and many young people with ASD (like my brother) struggle with making friends and finding a social niche. I would love for a program like this to be available to him back home, and in the meantime, I’m thrilled to help facilitate special relationships for kids like him in South Bend.”

She continued discussing takeaways from the talk: “Dr. Taylor emphasized that it will be imperative for families, schools, and communities to collaborate in supporting individuals with autism during their unique transitions to adulthood.  And, as Dr. Diehl noted at the end of the talk, that is an effort in which each of us—whether we will be classmates, colleagues, psychologists, parents, or CEOs—can take part.”

Tom Gordon is a sophomore from Stanford Hall and the club’s public relations coordinator.

Gordon said of the club, “Special Friends is attractive because it promises to add a unique and meaningful dimension to life at college.  My personal inspiration to participate in Special Friends starts with my little sister Mary, who has special needs.  After witnessing Mary enrich the lives of everyone she interacts with; and after realizing the profound grace that God brings into my own life every day because of my beautiful little sister, I understood the tremendous gift it is to develop relationships with individuals with developmental disabilities.

“Certainly, the goal of our lives is to love,” Gordon continued.  “Spending time with Special Friends has helped me to grow in love and appreciate the gifts of all those around me—even if they aren’t immediately apparent.”

More information about Special Friends Club can be found at their website, or by emailing the club officers at sfriends@nd.edu.

Owen Smith is a Sociology and American Studies major who could go on for days talking about how the College of Arts and Letters is the best. Want to discuss this with him? Contact Owen at osmith1@nd.edu.