LOS ANGELES — April is Autism Awareness Month. Autism Spectrum Disorder has been identified in 1 in 54 children in the U.S.
Families are shedding light on the complexities of receiving a diagnosis and treatment by bringing awareness to the issue.
Navon Mellinger-Carter is 25 years old with a bright personality. At 3 years old, he was diagnosed with cerebral palsy. After years of working in special education, Navon's mother, Rolynda Mellinger, said she believed her son's lagging social and learning development was linked to something different.
She began asking teachers and specialists to test him for autism and said all of his evaluations came back undetected.
"I was taking my son's individualized education plans back to work with me, showing them to my teachers, school psychiatrist, and principals, and found out they were not giving my son services appropriate for him," she said.
It wasn't until he was 12 years old that Navon was diagnosed.
As difficult as it was obtaining his autism diagnosis, receiving quality treatment was where the real fight began.
From limited access to doctors who accepted Medi-Cal insurance to feeling like Navon's needs were being belittled and overlooked by specialists and in the classroom, there were many challenges.
"He had so many doctor's appointments," Mellinger said. "Trying to hold down a job as a single mom, I couldn't really afford to quit a job to stay home to take care of him full time."
She didn't have time to fight for all of the services she believed Navon deserved.
Stephanie Keenie Parks' experiences and questions while raising a child on the autism spectrum led her to seek answers through her research as a UCLA student working on her doctorate.
"There's like an $8,000 difference between who gets access to services and who doesn't, and it's along race lines," she said.
Parks also said Black children are misdiagnosed more often than white children.
According to research from Prevalence, white children are about 19% more likely than Black children and 65% more likely than Hispanic children to be diagnosed with autism.
Like Mellinger, Carla Suarez-Capdet and Juan Capdet noticed their son, Jordi, exhibiting signs of autism as young as age 2.
"It wasn't an easy process. We probably lost about eight to 10 months trying to find out what was going on," Suarez-Capdet said.
With her husband's help, she left corporate America to embark on a relentless battle advocating for Jordi.
"Not everyone has that luxury," she said. "Some are single parents and don't have that extra support."
Suarez-Capdet agrees there are socioeconomic and racial disparities in accessing autism services but said the special education system makes it a struggle for all parents.
"I've had to reach out to any and everyone to get my voice heard in order to get my son the things that he needs," she said.
One of those things is a personal occupational therapist to assist Jordi with his learning.
She is also planning on becoming a full-time advocate helping other families in her community navigate the special education system.
Mellinger, who published a book detailing her son's journey titled 22 Years Living With Autism, is proud of how far Navon has come in his battle with autism.
"It's all because I fought for him, and I'm glad that I did," she said.
It's a fight that's taken time but hasn't stolen their joy.
CORRECTION: An earlier version of this story misspelled the names of Carla Suarez-Capdet, Juan Capdet, and their son, Jordi. This has been corrected. (April 2, 2021)