WATCH: Delayed diagnosis and care of autism keeping minority children behind

Oct 5, 2015

Johnathan Casserly has autism spectrum disorder.
Credit ANA CASSERLY

Autism spectrum disorder, better known as autism, is a condition where an individual struggles to engage in two-way communication, especially in social situations. 

There is no "cure" for autism, and the cause may come down to hundreds of interacting factors, but we do know it is critical for people with autism to get the earliest possible diagnosis and get access to appropriate educational and medical resources.

(Video after the jump.)

Too Little, Too Late

While the number of children diagnosed is rising, minorities aren’t climbing at the rate of their white peers. The Centers for Disease Control and Prevention reports children of color can be diagnosed as much as 18 to 24 months later than Caucasian kids. And reports indicate that when African-American and Hispanic children are presented to doctors as showing signs of autism, they are more likely to be misdiagnosed as having another condition, such as Attention Deficit Hyperactivity Disorder, or ADHD.

Ana Casserly is from Colombia and now lives in Rochester, NY. She is the mother of a 16-year-old son with autism, and is also an advocate of Latino families who are fighting for their children's educational rights. Casserly noticed something was a little off with her son’s behavior after his second birthday.

“The doctors used to tell me I just want to label my child. I said to the doctors, ‘If something is not wrong with my child, I will come back here and apologize to you,’” says Casserly.

Access Not Granted

Autism can look different in a white child compared to one of color, and experts agree cultural differences play a role. But there are also concerns that access to services depends on which community you’re a part of.

The Casserly family.
Credit ANA CASSERLY

“There’s a lot of programs out there, do you think we know? Thanks to a friend of mine – she’s white – she’s the one who comes and tells me, ‘Look they’re opening this program or that program.’ And we had the same coordinator!” says Casserly.

Christopher Suriano works with the Rochester City School District. It’s his job to come up with new programs to help children with disabilities transition from kindergarten onward.

“I think in urban settings, we need to look at better access to community resources, and community centers that focus on students with autism. I feel that there’s a lack of resources for that particular disability,” says Suriano, “Suburban parents I think have more access to community resources as opposed to parents in Rochester.”

The School District has spent a lot on staffing but Suriano says there’s still an issue securing more bilingual special education teachers. Parents of children with disabilities often are not prepared to navigate the complexities of special education. And, if you add the barrier they face due to language, they begin to feel isolated and frustrated when seeking services for their children

“To be very honest with you, we don’t really have specific training around the different disabilities and the cultural aspects that would be impacting that student. We look at the student’s disability as a whole,” adds Suriano.

The Effects of Air Pollution on Autism

Environmental factors can also trigger autism. Recent studies by Deborah Cory-Slechta, professor of Environmental Medicine at University of Rochester, have linked air pollution to the onset of the disease. Cory-Slechta’s experiments demonstrate how exposure to air pollution early in life produces harmful changes in the brains of mice, including an enlargement of part of the brain that is seen in humans who have autism.

A 2013 study reported that children who lived in areas with high levels of traffic-related air pollution during their first year of life were three times as likely to develop autism. Minority communities are likely to be located near the aforementioned areas of the city.

“I would say it can contribute here. Those people probably experience different risk factors, so I might expect to see - and nobody's done this study yet - higher levels of autism,” says Cory-Slechta.

Anecdotally, Ana Casserly says there’s a pattern of autism in her neighborhood that she links to levels of air pollution.

“The expressway is over there and we have 1, 2, 3, 4, 5 kids with autism around here,” she adds.

Watch Sasha-Ann Simons' report as aired on WXXI-TV's Need To Know.