I remember being in the cafeteria in second grade when something was making my friend feel anxious. It wasn’t anything new. I was used to her being fidgety, sometimes pacing, and repeating things she overheard people saying. This particular day though, she began to clinch her fists really tight and repeatedly hit her forehead on her lunchbox. One of the teachers finally came over and told her to stop, which made her even more agitated. The teacher escorted her out of the cafeteria, and soon her mother came to pick her up.
There were other incidents, and kids just labeled her as weird or slow. After second grade, we went to different schools and lost touch with one another.
In college, I had a friend who was autistic and spoke openly about what she dealt with. Autism is a complex brain condition that can interfere with a person’s ability to communicate, respond typically to surroundings, and form conventional relationships with other people.
I learned that the behaviors that I saw in my friend, in second grade, were examples of stimming — self-stimulating behaviors undertaken by many autistic people in order to control their feelings. These can include kinetic (movement-based) and echolalia (where someone constantly repeats a word or phrase). I also learned that things like not making eye contact and misunderstanding nonverbal cues are common autistic traits.
Although the commonness of autism diagnosis has been rising in recent years, disparities in diagnosis still remain. Black people within the United States are diagnosed later, are more likely to have an intellectual disability, and are excluded from research as well as services. Autistic Black women and girls are effectively invisible in the current scientific literature. Intersectional theory, which looks at a person as a whole, examines models that are inclusive toward diverse gender, ability, and racial/ethnic backgrounds. This theory may be a useful approach to clinical and research work with autism so that the medical community can effectively support the entire population of autistic people.
It’s been proven that mental conditions manifest differently in Black women. Due to gender and race socialization, autism spectrum disorder (ASD) shows up much differently in Black people and women and girls. Autism is popularly seen as super-smart boys and men who don’t know when to be quiet and don’t like spending time with others. However, women and girls are socialized into being seen and not heard, so autistic people who are female are often very shy. Girls are also expected to be nice and nurturing, so we are trained into catering to others and out of desiring to spend time alone.
Many Black women and girls do not receive ASD diagnoses as children, if ever, because they don’t fit the typical profile of autism. Such cultural stereotypes make it especially dangerous to be autistic while Black. Part of the reason people are quick to stereotype is that there is little to no research on Black women and girls with autism.
There is a debate in autism research about whether race should be considered in evaluating how well therapies work. In 2016, a study was released of evidence-based autism treatments. Only 73 of them, or 17.9 percent, reported the race, ethnicity or nationality of participants. Of the nearly 2,500 participants in the 73 studies, fewer than one in five reported their race — and just over 60 percent of those were white.
Race is seldom reported in autism studies because the condition is often overlooked in minority children and adults. The statistics on autism maintained by the U.S. Centers for Disease Control and Prevention provide no information on race or ethnicity for autistic adults, although there has been an increase in diagnoses among minority children. Even so, one in four minority children — most of whom are Black or Hispanic — still misses out on a diagnosis.
In a Season 2 episode of The Proud Family: Louder and Prouder, Dr. Lord, a behavioral psychologist, tests BeBe and CeCe for autism. The doctor explained that BeBe was on the autism spectrum at “low support,” which indicates the level of support currently needed. The episode explored autism in a way we hadn’t seen before in an animated series, as well as provided much needed information about autism.
As an adult, I think of my second-grade friend and how she most likely was rolled into the typical stereotypes. I don’t know if her family lacked access to healthcare providers to screen for autism or if they even considered autism to be a potential problem. She probably suffered longer than she needed to simply because she wasn’t diagnosed in a timely manner. What I do know is that if Black women and girls are effectively invisible from diagnosis and treatment now then they definitely were back then.
The negative stereotypes and stigma Black individuals with autism face may put their lives at risk. We know that police brutality is already a huge issue Black communities are subject to. The justice system has failed numerous times to keep Black communities safe, including when people are in the midst of a mental crisis. This is due to deep-rooted systemic racism.
April is National Autism Awareness Month which began in 1972 to shine a bright light on autism. The goal is to impart information about the importance of early diagnosis and early intervention. More importantly, it’s to advocate for awareness and change in schools where likely teachers are seeing early signs in children.
I believe it’s important to listen to the stories and experiences Black autistic individuals face in order to properly meet their needs. We can use our voices to spread awareness and educate others on how harmful stereotypes are. Being able to make a difference in just one person can influence how they treat others, which can possibly prevent conflict.
To learn more about autism, visit the Autistic Self Advocacy Network and the Autistic Women & Nonbinary Network websites.
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Archuleta is an author, poet, blogger, and host of the FearlessINK podcast. Archuleta's work centers Black women, mental health and wellness, and inspiring people to live their fullest potential.