Date Published: August 1, 2021
We are celebrating SPARK’s fifth anniversary with stories about the first families who joined.
Cason was a typical baby, delighting his parents as he learned to walk, talk, and play. But something happened when he was about 18 months old. Gradually, his talking and gesturing decreased. At his 2nd birthday party, he seemed to be in his own world. “In that moment, watching him around all these other kids, it was like a light bulb went on. Something was not right,” recalls his mother, Shannon McKee.
That night, she told her husband, Michael, “I think he might be on the autism spectrum.”
The McKees are school psychologists who had worked on a school district’s autism team. They know what typical child development looks like, and they know what autism looks like. And Cason had gone from one, to the other. About one in five youngsters with autism lose speech and social skills around age 2.1
Shannon McKee did not spend time wondering about why Cason has autism ― she would find that answer years later, with the help of the SPARK autism research study. Instead, she focused on helping him. “What do we do next?” she asked.
But she did not realize how difficult it would be, even for psychologists familiar with autism, to obtain a speedy evaluation, diagnosis, and therapies for their son.
The Struggle for Autism Services
At first, their pediatrician downplayed their concerns about Cason. But McKee insisted she wanted him to see a specialist quickly. The doctor referred Cason to a neurologist, who agreed he has autism.
He began receiving public Early Children Intervention (ECI) services in Texas, where they live. But ECI employees doubted his autism diagnosis, she says. They made comments such as, “‘You’re reading too much into it. I think he’s just a little delayed. I don’t think it’s autism.'”
McKee was not deterred by those remarks. Believing Cason needed more services than ECI provided, she put him on waiting lists for private speech, occupational, and behavioral therapies. She especially wanted him to have applied behavioral analysis (ABA) therapy, which was not offered to him through the public system.
After many months of waiting, he finally began receiving those therapies, and he also saw a private psychologist for a full evaluation. The testing confirmed the autism diagnosis. With time, Cason began talking again.
Refocusing a Career
McKee felt disappointed by the long process of having her concerns taken seriously, getting a full evaluation, and receiving autism therapies. “It really made me rethink what I was doing with my life professionally,” she says. “I just thought to myself so many times: if it is this hard for people like us two school psychologists who know exactly who to reach out to, what lists to get on, and what kinds of resources to seek out ― how hard must this be for families that don’t have those options and don’t know where to go or what to do or whom to call?”
McKee wanted to help underserved families overcome barriers to diagnosis and services for autism. She returned to school to add a second graduate degree, this time a doctoral degree in school psychology, with a focus on autism. She now provides evaluations for autism and other conditions in a public school district. She sees many students from low-income families who cannot access private evaluations and services, and she shares her autism expertise.
Through her work, McKee met psychologist Robin P. Kochel, Ph.D., at Baylor College of Medicine and Texas Children’s Hospital in Houston. Kochel was among the researchers around the country who helped SPARK launch a new autism study in 2016. Kochel told McKee about the study. The McKee family, including Cason and his younger sister, Delaney, joined, becoming one of SPARK’s first families. They submitted saliva samples for DNA analysis by SPARK. In this study, researchers are looking to uncover more genes that cause autism.
But genetics was not the main reason the McKees joined SPARK. “We participated just for the love of research since we’re both psychologists. The more research that is done, the more knowledgeable people become. But I never anticipated that we would get any kind of genetic result from SPARK,” Shannon McKee says.
Unexpected News Arrives
Five years went by without any genetic news from SPARK. Then earlier this year, SPARK added a new gene to its list of genes that contribute to autism: RALGAPB. Researchers had linked this gene to autism and development issues in a handful of people worldwide. This spring, SPARK told the McKees that Cason had a change to his RALGAPB gene. That change likely happened in the womb, and it was not inherited from his parents.
Shannon McKee says she was excited to learn what this news might mean for her son. But very few people have been diagnosed with a RALGAPB change, so researchers do not know yet what characteristics may be unique to them. To learn more, the family joined SPARK’s sister program, Simons Searchlight. Simons Searchlight promotes research on certain genetic conditions, including RALGAPB.
Cason is now 12. He is an excellent student at a private school for autism, where his father works. “He can just be himself there, and he has developed into such a leader at school. He looks out for other kids,” his mother says.
Cason especially likes math, computer programming, technology, and video games.
He has some challenges, as do many with autism. He struggles with social skills when interacting with neighborhood children who do not have autism. He also experiences anxiety, especially when things change, and has some sensory sensitivities, McKee says.
But the family focuses on his many strengths. “He loves the fact he has autism,” McKee says. “We were excited to share with him the genetic information from SPARK, how he gets to be on the cutting edge of research, and how important it is that he can help other people.”
Cason hopes that people show more understanding towards those on the spectrum. “I think they should understand that sometimes things are hard, but people with autism deserve a chance to speak up and show others what they can do,” he says.
What does Cason want to do when he grows up? A math whiz, he replies, “I’m not sure yet. I have a few ideas, but I would have to run the numbers.”
Photo courtesy of Shannon McKee.
- Read SPARK articles about special education advocacy: How to Advocate Successfully at School for Your Child with Autism, and Autism Advocacy Advice for Families of Color.
- See a SPARK article on The Career Paths of People with Autism and their Parents.
- Bradley C.C. et al. J. Dev. Behav. Pediatr. 37, 451-456 (2016) PubMed