Parenting in a Pandemic: A Journey to Autism Diagnosis and Advocacy
Date Published: May 24, 2023
In the middle of the night, Cristina would worry: Was she doing enough for her infant son? It was 2020, and her part of the world had shut down due to the COVID-19 pandemic. Her son could not go to day care or have other types of learning experiences common in safer times.
“I threw money at toys on Amazon, thinking I could create a day care in our house,” recalls Cristina, an educational consultant. She filled containers with sand, quinoa, and dried lentil beans so he could scoop and pour.
Cristina and her husband, Marc, were working from home. With so much togetherness, they became very attuned to every change in Ellis, their happy and affectionate son. As Ellis’s first birthday approached, his parents noticed that something was different about him.
“Something Wasn’t Clicking”
Marc, a software analyst, remembers a day when he put Ellis on his changing table and realized that his son was not repeating words as often as he used to do.
Cristina noticed that Ellis did not pour and scoop those containers of lentils and sand she had made for him. “All he wanted to do was sprinkle the sand. I couldn’t get him to hold a tool. The educator in me started thinking, ‘What am I not doing right to impart this skill?’ Something wasn’t clicking.”
When he was about 12 months old, they told their son’s pediatrician about these concerns. The doctor wanted to wait until his next routine appointment before screening him. But he also told them they could contact their local early intervention program to schedule a free developmental evaluation.
The family did that, so Ellis could begin therapy for speech delays. A few months later, the pediatrician conducted a developmental screening of Ellis. He also referred him for evaluation at the Center for Autism and Related Disorders at Kennedy Krieger Institute in Maryland, where they live.
They were lucky: they got a speedy appointment at the autism clinic in 2021. Typically, wait times can range from months to more than a year. The family met with several specialists over video over the course of two days that spring, when Ellis was just 20 months old.
A Diagnosis of Autism
Those specialists agreed: Ellis has autism.
Cristina felt a certain amount of relief at the diagnosis. “I felt validated in my concerns. As a former special education teacher, I felt like there was a pathway to follow.”
Marc, however, was surprised by the diagnosis. He did not see what he thought were classic signs of autism. To Marc, Ellis was a social and affectionate boy who would look into his father’s eyes.
Autism causes differences in social and communication skills, and repetitive behaviors. Those signs can vary in each person, and range from mild to severe.
A Worry for the Future
And something else worried Marc. Stories about the deaths of Black men at the hands of police or vigilantes filled the news.
People with autism may face a greater risk. Their social and communication differences, and repetitive behaviors, have been misread as threatening or defiant by others, including police. About 20 percent of youth with autism were stopped by police by age 21, and 5 percent were arrested, according to one study.1 Young Black people with disabilities, including autism, were more likely to be arrested than others, another study found.2
Marc and Cristina worried. What will happen to Ellis when he becomes a tall Black man, like Marc, but with autism? Will the world make room for someone like him? Will he be safe?
The autism diagnosis “was just one more log on an already raging fire and that was difficult for me,” Marc says.
Early Diagnosis, Early Intervention
But he had reason to hope. “Ellis has two parents who love him and a support system. We’re not going to shrink away from the diagnosis. We’ll do whatever we have to do to get him the support that he needs. And I was thankful that he got his diagnosis at 20 months and not when he was 7.”
The average age of diagnosis is 4, although doctors say autism can be diagnosed by age 2. An earlier diagnosis means a child can begin autism therapies sooner.
Ellis received early intervention services and began a home therapy program using techniques proven effective with autism. Today, the happy 3-year-old attends a preschool autism program that is covered by his insurance and receives services through his local school system.
He also enjoys playing at a children’s gym, where he draws others into his orbit, his parents say. When Ellis is singing or playing by himself, other children will notice and try to join the game they believe he is playing. “It’s a superpower, for a lack of a better term,” Marc says.
Discovering SPARK, Taking Part in Autism Research and Advocacy
The next step in the family’s journey came from a flier that a friend gave Cristina. The flier advertised SPARK, the largest ongoing study of autism, and its connection to the autism clinic where Ellis was diagnosed, among other clinics around the country.
The family joined SPARK and provided saliva samples to help researchers uncover more genes linked to autism. With his background in data management, Marc explains, he was looking to science to provide factual information about autism.
“We’re not looking for a cure. We don’t think there is one, nor should there be one,” he says. “Having more knowledge is never a bad thing,” he says.
They did not stop there. Marc and Cristina also joined the African American and Black Family Advisory Board, which helps the SPARK team at Kennedy Krieger Institute increase its outreach to families of color. Black people have traditionally been underrepresented in autism research, and SPARK hopes to change that.
“So many of our beliefs about autism are rooted in research that is old or outdated,” Cristina says. She hopes SPARK research will help change that ─ and help the world better prepare for people like Ellis. Researchers are relying on SPARK for their studies of medical issues, speech, behavior, social supports, and other topics affecting children and adults.
Cristina hopes that autism research attracts people who have diverse backgrounds and who span the wide spectrum of autism.
“We all want the same thing: for human beings to have self-actualized and fulfilling lives,” Cristina says. “How we get there will be different for all of us because of the way that autism presents in each person. What research does is going to be different for all of us. And that is why all of us need to be represented in it.”
Interested in joining SPARK? Here’s what you should know.
Photo by McKenzie Elizabeth Photography.