Autism Spectrum Disorder diagnoses are on the rise. Here are five facts about ASD.
Since 2000, the autism rate among U.S. children has shot up 150 percent — from 1 in 150 kids to 1 in 59, according to the most recent data available.
Yet even as autism touches an increasing number of Americans, misinformation and stereotypes surrounding it persist. And reporters aren’t immune to missteps.
To strengthen our coverage of autism issues in Arizona, The Arizona Republic invited people living with the disorder — as well as educators, advocates and parents — to speak with journalists during the 11th installment of our Diversity Dialogue series.
- Diana Díaz-Harrison, the founder and director of Arizona Autism Charter Schools and mother of a son with autism.
- Maria Dixon, a clinical associate professor and speech-language pathologist at Arizona State University.
- Blair and Jodi Hill, co-founders of Connect Autism, who have autism and two children with autism.
- Susie Edwards, a special-education advocate and mother of two boys with autism.
- Denise Resnik, an international leader in autism issues, founder of First Place Arizona and mother of a son with autism.
- Howard Zlamal, a faculty member at the University of Arizona’s Leadership Education in Neurodevelopmental and Related Disabilities program who has Asperger’s syndrome.
Among other questions, we asked: What have we done well? Where have we messed up? Which stories are we missing?
Here are five key points from the discussion, which was open to the public.
Autism affects all subgroups
Autism coverage typically depicts white families, particularly white boys. But autism affects boys and girls of every race and ethnicity.
Lower autism rates among racial and ethnic minorities likely reflect delayed diagnoses, panelists said. Díaz-Harrison said minority children who lack access to quality health care and other resources generally get help later than their white peers.
“It’s really hard to get a diagnosis if you’re underserved,” she said.
Autism doesn’t always explain behavior
Headlines and coverage shape public perception. Panelists spoke about having to do “damage control” after negative stories involving people with autism are published, such as when profiles about the Parkland, Florida, school shooter emerged.
Reporters shouldn’t avoid mentioning autism when it’s relevant, they said. But news outlets should avoid throwing in the fact that someone has autism just because they know it to be true.
“Sadly, tragedy does happen with autism and without autism,” Resnik said. “It’s really about using good judgment and thinking about what we can learn from it.”
Not everything is ‘inspirational’
Stories and videos about people with autism living their daily lives are sometimes framed as “heartwarming” and “inspirational.”
That kind of coverage patronizes and objectifies people with autism, often at the expense of doing deeper stories about systemic problems, panelists said.
“We want to be treated like anybody else,” Jodi Hill said. “Why is ‘being nice to the person with autism’ a nice thing? That should be a normal thing.”
Panelists urged journalists and others to take care with terminology and labels. Some people prefer person-first language, such as “a person with autism,” while others prefer identity-first language, such as “an autistic person.”
Generally speaking, person-first language is preferred and “autistic” as a noun is considered offensive.
“It’s stigmatizing being different,” Dixon said. “I think the openness to talking about (labels) is important.”
Panelists also rejected the terms “low-functioning” or “high-functioning.”
“Low-functioning and high-functioning makes (autism) sound linear, when in reality, it’s a circle,” Edwards said. “You can be high-functioning in something and low-functioning in something else. You can have a rocket scientist who can’t speak.”
First-hand knowledge is valuable
When covering autism issues, reporters often rely on advocates, experts and parents instead of speaking with people living with autism.
Panelists said reporters can’t overvalue the role of self-advocacy in coverage.
“Knowing what it’s like to live with autism is different than having extensive education about autism,” Blair Hill said.
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