Date Published: April 15, 2019
Blake and Jennifer Sando have three reasons for their commitment to autism research: Lizzie, Blake Jr., and Teddy.
Lizzie, 11, is a happy girl who enjoys going places. Blake Jr., 8, has an engaging smile and likes the outdoors. Teddy, 5, loves to read and type on his iPad. All three have autism, and limited or no speech.
The Sandos joined the SPARK research study to help scientists learn more about the condition that affects their children.
“With our family, the question I always ask is whether there is some kind of genetic component that we’re missing. Clearly when you go three for three, the evidence would suggest that there is, or maybe it’s just blind chance,” Blake Sando says.
Each family member provided a saliva sample to SPARK, which scientists use to search for genetic changes related to autism. By comparing the genes of children and unaffected parents, researchers hope to learn more about which genetic changes contribute to autism. SPARK also has a free program that matches families with scientists who are researching treatments, services, and other autism-related matters. Families decide whether to take part in these studies, and participation is always optional.
The First Autism Diagnosis
The Sandos began their autism journey a decade ago, when they noticed that Lizzie, their first child, was not crawling, walking, pointing, or interacting with the world the way other toddlers did. She would get very excited by lights going on and off.
When she was about 18 months old, they took her to see a neurologist. “He diagnosed her pretty much on the spot with autism,” Sando recalls. The news was unexpected. “I didn’t know what autism was. There’s no history of autism in my family. There’s no history of autism in my wife’s family.”
They contacted the University of Miami – Nova Southeastern University Center for Autism and Related Disabilities (CARD), in south Florida. CARD is one of seven state-funded outreach and support centers based at universities in Florida. It also is one of more than 20 SPARK clinical sites across the country that help recruit families into the study.
The Sandos sought early intervention services for Lizzie, who has a seizure disorder. They also met with a genetic counselor, who told them their risk of having another child with autism was relatively low, Sando recalls.
When the Sandos’ second child, Blake Jr., was born in 2010, they were vigilant, as many parents are with babies born after an older child’s diagnosis. “You’re looking really hard at the next one,” Sando says.
Like his big sister, Blake Jr. had delays in his early development. He was diagnosed between his first and second birthdays, as was his younger brother, Teddy, who was born in 2013. According to research, almost 19 percent of children with an older sibling with autism will receive an autism diagnosis themselves.1
After Blake Jr.’s birth, Jennifer Sando stopped working outside the home. Many mothers of children with autism reduce their work hours or leave their jobs, according to research.2
The Frustration of Communication Challenges
Blake Jr. does not speak and struggles at times with self-injury, a relatively common behavior in people who have autism and serious delays in communication, according to research.3,4 “A lot of the behavior problems that the kids experience are really communication problems,” his father says. “If you can’t express what you want to someone, and people cannot understand you, you get really, really frustrated, and you do things to try to get your point across that are not appropriate.”
Blake Jr. also has wandered away from home, another potentially dangerous behavior that affects nearly half of children with autism.5 He and Lizzie wear GPS devices that can help first responders quickly locate them if they are missing. The family also had a fence installed, to help keep their children safe at home.
The children attend a public school. Lizzie and Blake Jr. learn in special education classrooms, with a handful of students on the spectrum. Lizzie can speak in short sentences. Teddy’s classroom includes typically developing children, who serve as role models for social behavior, his father says.
Teddy loves letters and books, and knows the names of colors. When he wants something, he uses a communication program on an iPad to generate a computer voice to speak his wishes. “I want milk,” and “I want to watch Elmo,” are common requests, his father says. “We’re trying to get the other two to use that type of communication device more, but Teddy has always had that interest in computers from the get-go.”
Sando joined the board of University of Miami CARD, so he could help with its mission of providing support, training, and consultations to thousands of families in south Florida.
In addition to research into genetics, Sando hopes science can clarify the role of environmental factors in autism, and also find better therapies, especially for communication problems.
Research into the needs and number of people with autism could serve another important function, he says. “When you have data available, you will have a much better likelihood of convincing state government to fund services,” he says.
Although he has learned much about autism since that first diagnosis a decade ago, Sando says there is more he wants to learn. “Frankly, with autism, you never really stop learning.”