Date Published: May 3, 2021
We are celebrating SPARK’s fifth anniversary with stories about the first families who joined.
Before the pandemic shut down most in-person events, the Center for Autism and Related Disabilities (CARD) at the University of Miami Nova Southeastern University held regular gatherings for the community. Jose Roman, a 27-year-old with autism, was a frequent fixture.
Jose often volunteered at CARD recruitment events for SPARK, an autism research study. He would help set up recruitment materials, play with kids, and talk with families. The families that attended were eager to hear about his experience as a teenager and an adult with autism.
When Jose tells people that he has autism, a lot of families approach him, says Jose’s sister Nathalie, who works at CARD. “He loves sharing,” she says. “For families with small children, it’s hard to see what their future might be. They ask Jose about his experience: Do you have friends? Did you go to college?”
Three years ago, Jose earned an associate’s degree from Broward College. Before the pandemic, he worked at the Young at Art Museum, in Davie, FL, where he helped with events and school outreach efforts. “I make sure all the materials are set and help families and kids to understand what to make,” says Jose, who is currently on furlough. His favorite project is making Christmas ornaments. In a project with CARD, he also helped the museum create an autism friendly event, called Sensory Sundays.
A Late Diagnosis
Jose was diagnosed with autism when he was 12 years old, which is somewhat late for a developmental disorder that can be detected as early as age 2. His doctors initially thought that he had attention deficit hyperactivity disorder, or ADHD. But the medication they gave him for that condition did not help. “It was a tough time for him,” Nathalie recalls.
Feeling that the diagnosis didn’t fit, the family soon found a new pediatrician and neurologist, who diagnosed Jose with Asperger’s syndrome. That diagnosis has since been folded into the general autism diagnosis.
Because of his late diagnosis, Jose missed out on early therapies that are offered to children with autism, such as speech, occupational, and behavioral therapy. Searching for support after Jose’s diagnosis, his family found CARD. The organization helped them to better understand autism and to navigate the school programs and other support that might help Jose.
CARD also offers programs for autistic adults, including social skills, job readiness and other life skills. Jose, now in his 20s, continues to participate.
Jose’s journey inspired his sister, Nathalie, to study applied behavior analysis. “The way people learn and behave has always intrigued me,” she says. “When it came to my brother, he had a tough time processing information and acquiring skills, so I made it my personal mission to learn what I could to help him succeed.” She now works as a case manager at CARD, where she helps to run some of these programs.
Jose and his family first learned about the SPARK study through CARD. CARD is one of SPARK’s clinical sites, autism research centers around the country that help enroll families in SPARK.
The family had looked into other research studies. But they weren’t interested in participating in research that was focused on finding a cure for autism. They were drawn to SPARK in large part because of its goal to create a large database — a collection of information about people with autism that can help scientists learn more about the condition.
Jose and his family were the first SPARK participants at CARD to submit a saliva sample, which researchers use to study participants’ genes. SPARK scientists look for gene changes that are tied to autism and share that information with families.
At in-person events, Jose helps kids who are having a hard time spitting into a tube. He distracts them by blowing bubbles, making faces, and reminding them how they’ll get to play with Legos and other toys when they’re done.
Brothers and sisters of people with autism are eligible to join SPARK, so Nathalie also submitted a saliva sample. Both she and Jose have digestive issues, a common issue in people with autism. She would like to find out if there is a genetic cause.
Adjusting to Pandemic Life
Last year, Jose participated in the track events at the Special Olympics Area Games in Broward County. He qualified to compete in the state level games in summer 2020, but they were put on hold because of the pandemic. Many of CARD’S in-person offerings are also on hold.
Unable to volunteer or compete in sports over the last year, Jose has joined some virtual communities, including Virtual Hangouts with Wings of Friendship, and applied for a leadership training program. “The silver lining to the pandemic has been the creation of virtual community programs for adults with disabilities,” Nathalie says. “Pre-pandemic these programs were scarce, especially for adults.”
Jose says that the programs have helped him make friends and learn new skills, such as cooking and drawing. They have also helped him learn coping strategies to deal with a very difficult loss – Jose and Nathalie lost their mother last year. “All of these programs have really helped me during the pandemic to not feel alone,” Jose says. “I have a lot of fun making new friends and feeling connected to others.”