Date Published: June 14, 2022
The Austins suspected that their middle child, Camryn, had autism, but her teachers and doctor did not. Perhaps it was because Camryn did not fit the traditional picture of someone with autism. Camryn is talkative, female, and Black.
Camryn was one of only a handful of Black children in her small, rural school district, says her mother, Kristin Austin. Austin worried that, if she kept pushing the school to evaluate her daughter for autism, it might affect how teachers viewed other Black girls.
The family moved to a larger, more diverse area, where Cami, as she’s called, could get the help she needed. Cami’s new school diagnosed her with autism in 2021. The desire to help others like Cami led the Austins to SPARK, the largest research study of autism.
“I started scouring the web to inform myself and equip our family with what we needed to support her, as well as ourselves, and SPARK kept coming up as a leading source of research in autism,” Austin explains. “While we’re very interested in Cami’s personal development, we are also interested in understanding the broader landscape of what the autism community represents, the challenges, and opportunities.”
Austin is a professor with a doctorate in education. As she learned more about autism, she realized that studies often did not include girls of color. The family joined SPARK to help change that. They provided DNA samples to SPARK researchers, who are looking for more genes that cause autism.
Getting Attention for Cami’s Autism
For years, Cami’s parents tried to persuade others to see what they saw.
Cami is the second child, and only daughter, of Kristin and Cerick Austin, educators who live in Pennsylvania. From infancy through her toddler years, Cami slept very little, maybe just four hours a night, and usually not in one stretch.
Cami’s doctor did not worry because she was a happy child who was seemingly unaffected by lack of sleep. “She has always been an incredibly amicable, loving, and exuberant child,” Kristin Austin says. But that did not relieve her worry about Cami’s sleep problems: “Brain development at that age takes place during sleep,” she says.
As Cami grew, her parents saw that she struggled with social skills, attention, and behavior. Two preschools that she attended also noticed: they each found her behavior to be too disruptive for them. Austin expressed her concerns about Cami’s social problems, but Cami’s many strengths derailed those conversations.
Cami is smart with an advanced vocabulary and a great memory. At 4 years old, she could recite the periodic table of elements, which most students do not learn until high school chemistry class, her mother recalls.
She also had traits common to autism. They included being very sensitive to certain fabrics, sounds, and smells; repeating phrases (which is called echolalia); obsessive and compulsive behaviors; and running from the classroom or hiding under a desk when she felt overwhelmed.
“People would constantly write off our concerns, saying, ‘She’s just advanced, she’s gifted, she’s bored.’ They would get distracted by what she could do and minimize the areas that really needed development,” Austin said.
The Austins got along well with Cami’s elementary school teachers. But, as one of the few Black families in the small district, they considered carefully how hard they should push for her to be evaluated for her developmental differences.
“When you are a family in that type of environment, it’s possible that you are overly cautious about what decisions you make with your own children because it might skew the future of other Black children,” explains Austin, who has studied and worked in the field of diversity, equity, and inclusion.
She worried that any diagnosis Cami might receive there could create stereotypes or biases, simply because the school district had very limited experience with Black children. “We didn’t want the way Cami appeared to be, to lead to the overdiagnosis of other Black children,” she explains.
Austin says she is fortunate that her family could move to a larger school district with more resources. The teachers in Cami’s new school quickly recognized her needs. After her diagnosis, Cami received an Individualized Education Program (IEP) that includes help with social, emotional, and speech skills.
“If we had not moved, and if her father and I weren’t who we are ─ and by who we are, I mean having the privilege that we have, whether economic or educational or both ─ I don’t believe she would have been diagnosed. I think she would have been labeled as a sassy, mouthy Black girl, who happened to be smart,” Austin says.
The Diversity of Autism
Austin joined SPARK in part to help increase knowledge about how autism affects girls of color.
Autism affects all races and ethnicities equally. But most of what we know about autism and autism genetics comes from studies that largely involved people of European descent, and boys.
Historically, people of color have been diagnosed at older ages, and less frequently, than white children in the United States. Also, autistic girls are often diagnosed later than autistic boys, who greatly outnumber them.
Some researchers wonder if girls may be slipping through the diagnostic cracks because their autism may look different. SPARK has enrolled more than 26,000 autistic girls and women, making it easier for researchers to study them.
Cami, In Her Own Words
Like her mother, 11-year-old Cami is interested in people understanding more about autism, especially how it affects people differently.
“I really want people to know that if someone tells you they have autism, believe them,” Cami says. “So many people don’t believe me just because I can talk. Being able to talk doesn’t mean I don’t have autism, it means I don’t need help with speech ─ although sometimes I actually do.”
Cami’s best friend is a girl with autism who is nonspeaking.
Cami enjoys many interests. “I love writing realistic fiction, anything arts and crafts, dancing, and acting. I am learning to sew and I love, love, love reading! I also love learning about Black and Latina women in history,” Cami says.
She has two possible careers in mind: a performing artist or a politician. “Unless someone does it before me ─ which could definitely happen ─ I want to be the first woman president,” Cami says.
Interested in joining SPARK? Here’s what you should know.
Photo provided by Kristin Austin, Ed.D.