The Centers for Disease Control defines autism as a developmental disability that can cause a wide range of challenges in social interactions, communication and behavior.
It affects about one in 44 children, and while therapists say early intervention is key to treating autism effectively, Black children are five times more likely to be misdiagnosed or diagnosed later in life.
Nikki Griffin, a board certified behavior analyst and clinical manager at Chicago nonprofit Envision Unlimited, attributes some of that disparity to disparities in health care access.
“I think one of the biggest reasons is simply lack of access to the medical professionals that they need to be able to access in order to receive those diagnoses,” Griffin said. “If you think your child might have autism and you have to then go to a specialist, you have to go to repeated appointments. You have to travel all around the city to find those specialists. Those kinds of things are very time intensive and very money intensive and that can be very difficult for a lot of individuals to be able to access.”
Griffin said her organization seeks to address those barriers by offering in-home care for the people it serves.
“We come to them wherever they are,” she said. “We are able to eliminate the need for the parent to rearrange their schedules so their child can get therapy, we work with the family to make sure that we can provide what they need when they are available for it.”
Cynthia Pierre, a clinical psychologist at Rush University Medical Center’s Autism Center, said parents should look for two categories of autism symptoms in their children. First is social communication struggles.
“When we think about a conversation or even a nonverbal interaction, there’s a back and forth that we’re looking for,” Pierre said. “Children who present with autism might struggle with some of those verbal and nonverbal back and forth skills which impact friendships and academic functioning.”
The second category is behavior.
“What we’re looking for in terms of symptoms include repetitive and restricted behavior, so very strong interests and activities and insistence on sameness,” Pierre continued. “Difficulty transitioning between one activity to the next, motor, unusual motor movements or mannerisms as well as sensory sensitivities or sensory seeking behavior.”
Griffin said getting children evaluated for autism as early as possible can help avoid having to un-do unhelpful behaviors.
“If we wait too late to try to step in and provide those interventions, it’s not to say that those interventions won’t be successful, but it might take longer for those interventions to see success to come to fruition just because the child would have had the opportunity at that point to … cement the inappropriate styles of play in and inappropriate styles of communication, that they might have failed to learn appropriately if we don’t intervene soon enough,” Griffin said.
While the number of people being diagnosed with autism has risen in the past two decades, Pierre said much more has been learned about autism treatment as well.
“We don’t know all the answers in terms of really understanding the genetic underpinnings of autism, any environmental factors that might make it more likely for a child to be born with autism,” Pierre said. “However, what we do know is that our tools, and our ability to identify, more subtle presentations of autism have improved substantially in the past 15 or so years. And so what that means is that folks who are coming in to a clinic who may have been just identified as having anxiety or maybe they’re just an introvert, they might be correctly diagnosed with autism because of the quality of the tools that we have.”