Black autistic lives matter

A Young girl with autism holding small plastic toys to comfort herself in new situations that can be stressful. (Getty Images)

In the United States, people of all races and ethnicities are diagnosed with autism spectrum disorder (ASD) each day.

According to the Autistic Self Advocacy Network, every autistic person experiences autism differently, but there are some things that many of them have in common. That includes thinking, processing senses, moving, communicating, and socializing differently. Some autistic people may also need help with daily living.

Statistics on how many children in the U.S. are diagnosed with ASD varies. According to the CDC, it is 1 in 44 children. Boys are diagnosed more often than girls. However, researchers believe that girls are not being diagnosed as much as they should be.

Black children are often diagnosed later than White children

While the rate of diagnosis for autism is the same for all racial groups, Black children are diagnosed later (in some studies, up to 3 years) than their white counterparts.

This is important. When this happens, children and families aren’t receiving services to better help their child.

Early intervention programs are free and help children make gains in communication and social interactions early. The longer it takes to correctly diagnose autism, the longer families go without help.

There are many reasons why Black children are not being diagnosed as early.

DR. VALIRE COPELAND

“Often, as parents, we don’t know what we’re looking for,” says University of Pittsburgh’s Dr. Valire Copeland, professor in the School of Social Work and in the Department of Behavioral and Community Health Services.

“This is especially true for first-time parents. If you do notice your child has speech delays or motor delays, or engages in repetitive movements or behaviors, you might just think ‘he’ll catch up or grow out of it.’”

This is the same for teachers and other professionals who misinterpret signs.

“For example, a Sunday School or daycare teacher may not be familiar with autism,” Dr. Copeland explains. “Instead, she may suggest your child has behavioral issues.”

There is also the problem of autism stigma, which is common among all people. “Sadly, no matter what color our skin, we all have bias about mental illness and disability,” Dr. Copeland states.

What does autism look like in a child?

While Dr. Copeland notes that autism is unique to everyone, there are some early signs.

It is important to note that any one sign by itself is typically not cause for concern. If you have noticed multiple signs, it may be worth discussing them with your child’s pediatrician.  

For example:

  • Limited eye contact (e.g., looking more at toys than people)
  • Difficulty in gaining child’s attention, including not responding to their name
  • Not being interested in other children
  • Not sharing enjoyment (smiling/laughing) with others
  • Difficulty with change in routine
  • Presence of sensory sensitivities (loud noises, selective food intake, staring closely at objects)
  • Having interests that are intense or repetitive
  • Developmental delays, such as few to no single words by 18 months
  • Any loss of speech, babbling, or social skills at any age.

Not every child with autism will have all these signs.  In addition, many children with these signs will not end up with an autism diagnosis. 

Some children show signs of autism before one year of age, but for some, autism is not easily noticeable before 2 or 3 years. 

Autism, like many conditions that involve healthcare and Black Americans, includes racial inequities, such as a lack of easy and affordable access to doctors who treat the disorder.

“Ideally, you want your child diagnosed and treated by a pediatric autism specialist,” Dr. Copeland adds. “Unfortunately, there aren’t a lot of them in the system and most of them are not Black, so they don’t understand the African American community. Therefore, first see your regular pediatrician”

“The entire process can be overwhelming,” says Dr. Copeland. “How do you find a doctor? How do you take time off from work to see the doctor? How do you pay for the doctor visits, required testing, treatment, and support services if your insurance doesn’t cover all the costs, you don’t have insurance, or your copay is high? We must acknowledge that this is a stressful situation for families to deal with, and it goes on for a lifetime.”

Early diagnosis is the key to long-term success

The earlier the diagnosis is made, the better, preferably by the age of 2-3 years old.

At this early age, interventions have a better chance for long-term positive effects on children’s learning and progress (National Institute of Health). The Pennsylvania Department of Education has an early intervention program that is free to qualifying families.” (Call the CONNECT Helpline at 1-800-692-7288.)

“I like to tell parents and caregivers, if you or someone you respect in the community thinks your child may have autism or mentions concerns, please see a doctor who can prove you wrong,” says Dr. Copeland.

Be accepting of autism

There are many online national resources that can help people better understand autism, including how to support autistic people in the Black community, such as Autism Urban Connections, Inc. (located in Pittsburgh), Autism in Black, Inc., and the Colors of Autism Foundation.

Dr. Copeland adds, “One of the simplest and most profound things you can do is to be accepting of people in the Black community who have autism – and their family members/caregivers. We all want to be accepted and loved, starting with where we live.”

RESOURCES
https://www.aucofpgh.org/
https://paautism.org/

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