By Megan Sayles
AFRO Staff Writer
msayles@afro.com
Baltimore resident Donte Lewis, 35, was diagnosed with autism when he was 3 years old. At such a young age, his grasp of the diagnosis was limited.
“It didn’t really hit me until later on as I got older because during that time I didn’t really know what autism was,” said Lewis. “I just pretty much masked myself and thought I was just like all the other kids. But, I noticed that I process information a little bit differently in terms of mechanical skills, writing, communication and overall social skills.”
“Masking” refers to conscious or unconscious efforts to appear non-autistic in order to fit in socially or avoid societal stigmas.
“You see neurotypical individuals, and you pretty much want to be just like them,” said Lewis. “You try to mentally and emotionally deny the aspect of being a neurodiverse individual, and that is actually something that I struggled with.”
During his elementary school years, it was challenging for Lewis to make friends. At times, he stuttered or sounded confused during conversations.
It was in meeting one of his first best friends during middle school that Lewis started to step beyond his comfort zone. His friend was also neurodiverse, and the two of them joined forces to start their own club: Boy’s Night Out.
“It was like our own little social club for individuals who felt like outcasts or left out,” said Lewis. “We would play card games and talk about how things were going in school and where we planned on seeing ourselves in five years.”
Lewis continued holding Boy’s Night Out gatherings into high school. He said being a part of it helped him to build his confidence and social skills. It also helped me to accept his autism diagnosis.
Lewis said being both Black and autistic has shown him how often marginalized communities are overlooked in conversations about autism support.
“I’m not trying to demonize any programs that do want to help people who are on the spectrum but lately, it kind of feels like we’re being left out of certain aspects,” said Lewis.
This exclusion spans the range of support that is available to people with autism from underserved communities and their representation in study groups and targeted developmental programs, according to Lewis.
“I feel like there needs to be a louder call for individuals of marginalized communities who are autistic,” said Lewis. “From what I’ve seen, a lot of neurodiverse individuals who are African American are also very talented in music and performing arts. We have singers, songwriters, graphics design artists and future film directors and cinematographers. That energy needs to be pushed more.”
Today, Lewis runs Club BASSMODE, a Baltimore-based company that holds local DJ shows. He also does freelance photography, videography and graphic design for parties, weddings and other events.
Lewis was recently awarded a scholarship from the Reeds Fund, which he will use to secure a certificate in music production and audio engineering. He then plans to use the credential to attend University of Maryland, Baltimore County and obtain a bachelor’s degree in music technology.
“I want to be an inspirational story to other individuals who are on the spectrum and who feel the same way that I did but also have passions and projects that they want to do, ” said Lewis.
Breaking the stigma
Each year, April is recognized as World Autism Month, a time to raise awareness, promote understanding and foster acceptance of individuals with autism spectrum disorder (ASD). It shines a spotlight on the experiences and contributions of people with autism.
But, Taya Dunn Johnson, vice president for the board of The Autism Society Baltimore-Chesapeake (ASBC), said she likes to think of it as, “Autism Awareness, Acceptance and Inclusion” month.
“It really is threefold. You can be aware and still ignore something or someone or purposefully exclude something or someone,” said Dunn Johnson. “But, the more we know, understand and make an effort to give those who are autistic dignity and love as members of our society with equal rights as the rest of us, we’re all richer for it.”
The awareness, acceptance and inclusion of people with autism is personal for Dunn Johnson. Her teenage son, Marcus, was diagnosed with autism when he was 2 years old. She said her family was lucky to discover his diagnosis at such a young age, as early intervention is paramount. But, for some families, this is not the case.
According to a 2021 study in the Journal of Autism and Developmental Disorders, Black children are almost three times less likely to receive an autism diagnosis on their first visit to a specialty care clinic compared to White children. In fact, Black children typically require three or more visits until they receive an autism diagnosis, and most receive their diagnosis after age 5.
“What happens amongst minority groups, in particular Black, Hispanic and indigenous populations, is that children are diagnosed a lot later. Typically, we see that when the only apparent signs are behavioral,” said Dunn Johnson. “In a lot of ways, the disparity perpetuates itself in a cycle of inequity because, typically, Black, Brown and Hispanic children are penalized for behavior a lot earlier.”
Biases play a role in this, according to Dunn Johnson. An educator or clinician may misinterpret behaviors linked to autism as defiance.
“If a system expects that Black and Hispanic children are going to be lower performers educationally and are going to act up in school and become a behavioral problem, they’re less likely to notice that there is actually something going on that’s preventing them from being positive influences in their classrooms and communities,” said Dunn Johnson.
Families of color also face socioeconomic barriers. Some may rely on public insurance, like Medicaid, which may not cover the full range of evaluations or therapies needed to diagnose and support a child with autism. They may also lack the flexibility to take time off for medical appointments or school meetings because they have long work hours or multiple jobs.
Dunn Johnson said members of the autistic community are at a critical juncture in the U.S. today. Health and Human Services Secretary Robert F. Kennedy Jr. has characterized autism as a disease that he vows to find a “cure” for. He’s also claimed that children with autism will never pay taxes, hold a job or go on a date, and that many will never be able to use the bathroom alone.
“Comments like that are particularly scary. They’re offensive, but when they are linked to national policy, it is terrifying across the disability world,” said Dunn Johnson. “As a mother with a child with autism and as a human on the planet knowing and loving several people who identify themselves as autistic, it’s scary to me that there are people who would try to deny their personhood. Autism is a unique condition, and for it to be maligned in this way feels destructive.”
In spite of the White House’s stance, Dunn Johnson said ASBC will continue to stand firm in its mission of connecting and empowering everyone in the Autism community with the resources they need to live fully.
“Don’t let fear, misinformation and political rhetoric change what you know about people who have been on the frontlines fighting. We are in no way shape or form dialing back our support or attempting to curry favor with anyone else by saying something about autism that is not true,” said Dunn Johnson. “We will continue to hold programs, and if things become more difficult, we will continue to attempt to support in the best way we can.”
