Siblings with Autism: Erik and Luke’s Story

Published on

Every fall, Erik and Luke, along with their parents, Jennifer and Tom, and their sister Julia, run in Meadows Miler, the 5- and 10k race they started 2017. Named after a local trail, the community run benefits autism education. Erik, Luke and Julia are triplets. While the boys were diagnosed with autism at a young age, Julia is neurotypical. The run is just one of the many ways their family advocates for autism acceptance, research and support.

“Our boys have been given great help,” says Jennifer. “It gives us purpose to help other parents know there are interventions, resources and hope. When parents have hope, they can move from acceptance into action.”

Jennifer had to search for hope. When, as an infant, Erik began to miss developmental milestones, the family was referred to Developmental and Behavioral Pediatrics at Children’s Hospital of Philadelphia (CHOP), where Erik was ultimately diagnosed with moderate-severe autism.

“That was the most difficult period of our lives,” says Jennifer. “It was like a rug was pulled out from under us.”

At 3, Erik was nonverbal and unable to hold eye contact. This inability to communicate often led to severe tantrums. Fortunately, an early diagnosis allows for early access to crucial resources. In addition to the support of Developmental and Behavioral Pediatrics, Erik was enrolled in the Princeton Child Development Institute, a New Jersey school known for research-based autism education. The family also participated in research projects and benefitted from family education through CHOP’s Center for Autism Research (CAR).

“CAR met us as a family and brought us in,” says Jennifer. “We’ve always felt we have at a seat at this multidisciplinary table and that our voices are heard by the medical experts. Our needs have been met exponentially.”

From acceptance to action

While Erik’s presentation of autism was undeniable, his brother Luke’s was the opposite. Luke met all his developmental milestones and even read early. But while he excelled academically, he couldn’t engage socially or emotionally. “We thought Luke had some quirks and that was all,” says Tom. “It’s much easier to be in denial when it’s subtle.”

Luke was 3 when one of Erik’s teachers suggested Luke be evaluated for autism. He was diagnosed at CHOP, which was a “gut punch” for his parents. “I found hope at CHOP,” says Jennifer. “The hope propelled me into action. I knew I was going to get the best possible care for my children.”

The family continued their involvement with CAR and also received a grant for Luke to attend Erik’s school. Luke received autism intervention until age 5. At kindergarten, he was able to transition to a mainstream, independent private school for boys.

Investing in hope

Now 15, Erik and Luke are excelling. Because he’s received the right supports, Erik engages socially, embraces new experiences and has friends. He’s an avid pianist and multi-sport Special Olympics athlete. Now highly verbal, Erik has even done public speaking, advocating for autism research and intervention at fundraising events and to a professional group at CHOP.

Luke now attends a prestigious private high school, where he is a competitive cross-country athlete and plans to participate in student government, theater, Model UN, track and tennis.

“None of this happened overnight,” says Tom, noting the years of personal investment and commitment to helping the boys reach their full potential. “CHOP was one of the places that invested.”

It’s CHOP’s investment in world-class patient care and innovative research that compels Jennifer and Tom to support continued advancement in autism acceptance and evidence-based practices.

“As beneficiaries of CHOP research for the last decade, we know the research needs to continue moving forward,” says Tom. “Can we identify autism even earlier for better outcomes? Can we better understand the diverse manifestations of the condition? We’ve seen tangible results of this research. CHOP needs our funding, support and advocacy. If anyone can make a difference in the lives of children with autism, CHOP can.”