Autism and Health Care: Intersectionailty in Autism

What is Intersectionality?

(Image from Images of Intersectionality Blog)

"Intersectionality is a framework for conceptualizing a person, group of people, or social problem as affected by a number of discriminations and disadvantages. It takes into account people’s overlapping identities and experiences in order to understand the complexity of prejudices they face" (YW Boston).

Image from Recovery Village (2020).

"People with ASD often have additional physical and mental health challenges. This multi-diagnostic phenomenon is known as co-occurring diagnoses. In one study, an alarming 52% of people with autism were shown to have co-occurring gastrointestinal problems. Within the study group, 14% had co-occurring autism and seizure disorder.

The percentage of children with ASD and co-occurring sleep disorder is 53–78%. Emotional and behavioral health diagnoses can co-exist with autism. ASD and attention deficit hyperactivity disorder (ADHD) co-occur in 19% of people with autism. The next most prevalent co-occurring diagnosis is anxiety disorder at 7.5%. Depression and ASD co-occur at 2.5%."

From Healio (2020)

“This finding, using large datasets, confirms that the co-occurrence between being autistic and being transgender and gender-diverse is robust,” Varun Warrier, PhD, research associate at the Autism Research Centre in the department of psychiatry at the University of Cambridge, United Kingdom, and colleagues wrote. “We now need to understand the significance of this co-occurrence, and identify and address the factors that contribute to well-being of this group of people.”

Image from My Deaf Child.

• According to American Annals of the Deaf, in 2009 1 in 80 deaf or hearing impaired children were autistic.
• American School for the Deaf has expanded their program to offer English and American Sign Language (ASL) classes for hearing non-verbal autistic students, serving people between the ages of 3 - 21 years.
• "ASL, the main language for individuals who are deaf, has been incorporated into treatment for individuals who have delays in the acquisition of spoken language, including individuals on the autism spectrum" (Center for Autism Research).

Image from Powwows, "First Nations Teen Hoop Dances to Raise Awareness on Autism and Other Issues" (2018)

• "The number of American Indian/Native Alaskan (AI/AN) children isn’t known, but a 2009 University of Minnesota study reported that AI/AN children with autism are 13 percent less likely to be identified than white children with the disability. This is not to suggest ASD is less prevalent in Native communities; tribal children just aren’t being diagnosed." (VOA News, "Helping Native American Children with Autism Poses Challenges for Schools", 2020).
• "In Navajo, there’s no word for autism or disability. A lot of the elders didn’t understand what we were talking about. They didn’t necessarily see the signs of autism as something to be concerned about" (VOA News).
• "In Cree, the word used to describe autism is pîtoteyihtam — he/she thinks differently" (CBC Edmonton, "Edmonton researcher looks into autism spectrum disorder through a First Nations lens").
• "The Individuals with Disabilities Education Act (IDEA) requires public and Bureau of Indian Affairs-funded schools to provide “free and appropriate education” to children. But the law doesn’t specify what that entails. Depending on budgets or teacher skill levels, school systems may hold back, providing only a minimum of services. [Also,] private autism support services can run up to $60,000 a year and are thus out of reach for many Native families, particularly those on poor, rural reservations or remote Alaska Native villages" (VOA News).

Image conceived by Meskee Yatsayte and drawn by J.R. Taylor.

Images and graphs from Voices.

"Autism is identified more frequently in white children than in other racial groups — a trend that can sometimes create the perception of autism being a disease associated with only white individuals. And neither the Centers for Disease Control and Prevention nor the National Institutes of Health maintain comprehensive ethnic breakdowns of individuals living with autism in the United States.

Asians comprised about 5 percent of the roughly 347,000 children studied in a 2016 CDC report. That amounts to about one in 88 Asian and Pacific Islander children in the United States identified with autism spectrum disorder, which is comparable to the prevalence rates of Black and Hispanic children" (Voices, "For Asian Americans, What Does It Take To Confront Autism?").

"Efforts have been made to investigate delays in diagnoses and services for ethnic groups such as Blacks and Hispanics. But the challenges of Asian families continue to go underreported, in large part because families do not or cannot volunteer for research studies that require open disclosure or include complicated jargon..."

Within the Asian / Asian-American community, issues like cultural pride / shame over having a diagnosis, language barriers with ASD's broad vocabulary to describe the condition and therapy, and even deportation concerns keep parents and caregivers from seeking assistance.

From Spectrum News (2020):

Image from Spectrum News.

• Black children with autism tend to be diagnosed later than white children and are often misdiagnosed with other conditions. They also have less access to services and tend to be underrepresented in most studies of autism (Spectrum News, "U.S. Autism Prevalence in Black Children Based on Few Families").
• Because of later diagnosis, African American children may require longer and more intensive intervention. (Gourdine, Ruby M. et al., "Autism and the African American Community").
• A recent study from Georgia State University found that African-American parents reported fewer concerns about behaviors like delayed speech and repetitive behaviors, even though their children showed a greater severity with these symptoms, overall (NPR, "African-American and Latino children are often Overlooked when it comes to autism").
• In 2007, a study by a team at the Center for Autism and Developmental Disabilities Research and Epidemiology, University of Pennsylvania, found that African-American children were 5.1 times more likely to be misdiagnosed with conduct disorders before being diagnosed with ASD (NPR).

Made by Erin Bell for Oak Point University, May 2021