Shannan Paul’s son Dominic was diagnosed with autism at a relatively early age — something she says was essential for him learning to regulate his emotions.
Getting Dominic diagnosed involved several visits to the doctor’s office and conversations with other parents who had experience with autistic children. In those conversations, Paul, of Crystal, remembers often being the only Black parent.
Paul isn’t alone in that experience. Black autistic children get diagnosed, on average, two years later than their white peers, research shows. Lots can happen in two years, and that diagnosis gap can change how children develop and learn coping strategies for life.
A new PBS documentary, “In a Different Key,” explores the story of autism diagnosis from 1943 forward — and the challenges that remain, including inequity in the timing of autism diagnoses, and how and how that gap impacts families. It airs Tuesday at 8 p.m. on Twin Cities PBS.
Navigating the system
For children with autism, a diagnosis is a critical step that helps unlock resources, like therapies and classes — and health insurance coverage of them.
But for families, a big challenge in getting that life-changing diagnosis is knowing how to navigate healthcare systems.
When Dominic was around 4 years old, Paul started noticing that he wasn’t in the same developmental stage as his peers. She went to the doctor’s office and found that doctors seemed afraid to label or diagnose her son.
“Nobody was helping us with an actual diagnosis. It was more of, ‘Well, we’ll just put him in this class, and we’ll just say that he needs to be in this special class,'” she said.
Dominic is 14 years old now. Paul attributes doctors’ hesitancy to diagnose him with autism when he was littler to the stigma around autism at the time, something that has gotten better but is still prevalent today.
Eventually, Dominic was diagnosed with autism. But it was a bumpy ride getting there: Paul felt there was no one in the health system to guide her through what having a child diagnosed with autism might mean.
“It was already hard enough to sit there and see that your child isn’t thriving, but to not have a resource readily available to help usher you through what’s going on, was very difficult at the time,” she said.
The time gap in autism diagnosis between children of color and their white peers could be for a variety of reasons, including economic pressures, medical biases and lack of resources and connections.
“That two-year differential in getting a diagnosis has a gigantic impact because the difference between treatment starting for a 2-year-old and a 4-year-old is huge,” said John Donvan, one of the producers of “In a Different Key.”’
Stephanie Parks, a parent of an autistic child in California and a subject of the documentary, remembers being told by her pediatrician that her son had a behavioral issue. Parks’ son is now a teenager, but she recalls advocating for him 17 years ago when he had markers of autism.
“I would go to the pediatrician, and I couldn’t get her to hear my concerns. She would say things like, ‘Well, he is a boy, and they develop later,'” Parks said in an interview.
When her son was 4 years old, she walked into the military hospital and marked herself as a possible risk for self-harm on an intake form so that she could see a psychologist. Within 10 minutes, the psychologist told her that her son had autism, she said.
“That began like a journey where I started asking all these questions: Was it about our Blackness? Was it about the fact that, at that time, I hadn’t finished my education? Why couldn’t we get access to this diagnosis, and why couldn’t we get access to services in the same manner and rate that our peers were?” she said.
Keys for success
Getting a diagnosis is not a one-and-done process. Parks said it typically involves kids meeting with several professionals, like speech pathologists, occupational therapists, psychologists, developmental pediatricians and sometimes even a neurologist.
“It can take several days to get diagnosed,” she said. “For any family, this is a long, drawn-out process. It’s very difficult to do, and there are often wait times of six months and more. It’s not easy.”
After Paul’s son was diagnosed with autism, she found the resources he needed to be successful. Paul was able to send him to a school with an excellent special needs program, something that not all families can do.
“I don’t think that’s the experience that a lot of parents get. The system is specifically vague in some instances… I’m an exhausted single mom with a special needs kid, but also English is my first language, and I communicate for a living, and it’s still really hard and complicated,” she said. “So imagine if you’re not that and you’re still trying to navigate the system.”
Being a part of the autism community is a vital way to learn about the resources. That community is often primarily white families with higher incomes, she said. She doesn’t remember another family of color in her Early Childhood Family Education class that she took 11 years ago.
But because she knew about that resource, she could then seek more classes and support, which other marginalized groups may not have known about.
“I feel like I’m an anomaly, not the norm,” Paul said.
There’s also some stigma behind receiving help, she explained. Certain things, like asking for an individualized education plan, are essential to getting schools to give children with autism accommodations.
“I remember feeling as though, even though this program is designed to help my son thrive in particular situations and be able to make the accommodations that were for him, reading through the paperwork initially, I had to get over the fact that I’m like ‘this feels like welfare,'” Paul said. “This is something that is set up, and there’s a reason why, and there’s a historical context behind it. It’s not you unfairly tapping into the system.”
Medical racism
Even among families with the time and resources to explain to doctors that their child is in a developmentally different place than their peers, Black families are often met with unconscious or conscious bias, Paul said.
Paul says she’s heard of Black parents being perceived as “difficult” compared to white mothers, who may be seen as “mama bears.
While Parks, whose pediatrician did not think her son was autistic, doesn’t think her pediatrician was intentionally racist, she thinks race was a factor in why it took her son so long to get diagnosed.
“Some of the things that happen with health disparities are so insidious that it’s not about intention. She (the pediatrician) didn’t go to work that day thinking, ‘Hey, I’m gonna discriminate against the Parks family,” Parks said. “But the fact still remains that race can and does color the way in which we diagnose autism.”
A lot can happen in two years
The more time neurodivergent children work on a skillset, the better they get at it, Paul said. That’s why early diagnosis matters.
“It really takes a long time sometimes to get somebody in a proper routine where they can thrive,” she said. “Losing those years really can set you back dramatically.”
Those setbacks — or successes, in the case of early diagnoses — can add up. Kids who are placed early in schools that accommodate their needs are less likely to develop negative feelings toward school and more likely to feel accepted by peers.
“As a kid, just imagine feeling like you’re a failure when it’s kindergarten, but it might be hard for you because you process things different, and so it really does set you back even on an emotional level of being able to self-regulate and have agency,” Paul said.
8 yrs ago we went through the process of getting my son diagnosed for autism. It was a grueling experience that took well over a year. There are literally waitlists to be considered to get put on another waitlist. Along the way nobody would say the “A” word to avoid it being taken as a diagnosis.
My wife is a full-time caregiver. Wading through the medical, educational and government systems takes untold hours. I can’t imagine a couple both working full-time, let alone a single parent, trying to handle everything.
Getting connected with other parents helps immensely. Sharing experiences and resources is great. Finding a good group that focuses on help instead of blame (ie anti-vaxxers) is a challenge.