Deleah Payne, 12, center, spends time with her mother Delisa, right, and 6-year-old sister Delynn, left, as they watch movie clips on their living room television in Evansville, Ind. Deleah and Delynn were both diagnosed with autism. Blacks face unique challenges regarding autism. (Sam Owens/Evansville Courier & Press via AP, File)
“At two and a half years old, he was not speaking; he did not provide direct eye contact.”
“She didn’t like being held very much. I noticed she didn’t interact with other kids.”
“The other kids in his classroom would be playing and he would just kind of be off in the corner.”
“When you would call him, he wouldn’t turn around.”
“During family gatherings, he would isolate himself, turn his back away from the family, and begin to line up toys.”
These are testimonies from parents of children diagnosed with autism; more specifically, Black autistic children. Children with autism and their parents face special challenges related to their reality. When those children and parents are Black, additional hurdles must be cleared.
What is autism?
Autism is a neurodevelopmental condition of variable severity with lifelong effects that can be recognized from early childhood, chiefly characterized by difficulties with social interaction and communication and by restricted or repetitive patterns of thought and behavior.
A child with a diagnosis of autism can have interests that seem very narrow or unusual, like lining up their toys or just staring at an object. They often insist on following specific routines and small changes will upset them. They may be very sensitive to noise and other sensory issues. These symptoms of autism can range from severe to mild, and that is why doctors now call it autism spectrum disorder (ASD).
In other words, an autism diagnosis is not a one-size-fits-all reality.
High-functioning ASD-diagnosed persons can perform their activities of daily living (ADL), bathe themselves, dress themselves and become adults with successful careers and traditionally normal lives. Those on the lower end of the spectrum might suffer from regular seizures that don’t allow them to attend school. Some require 24-hour care and may even need to be medicated.
“Only about one-third of the people diagnosed with autism have an intellectual disability. The remaining two-thirds have normal intelligence or high intelligence,” said psychiatrist Dr. Isarel Sokeye.
But how does ASD impact Black children and parents in particular?
Diagnosis drama
“You don’t wanna at that point say, ‘Is there something wrong with my kid? Is there a problem?’ And I think that that’s a lot of what it was at the time, that you hear these different words and they start putting on labels and you wonder how you’re gonna move forward.”
“Looking back to when I first got my diagnosis, I wish somebody would’ve told me that it’s okay to be scared and it’s okay to not have all of the answers.”
Yovanna Madhere, a master social worker and personal development and evolution coach who works primarily with high-achieving women, is also an Afro-Latina mother of an autistic Gen Z son.
“My son was nonverbal until he was almost eight,” said Madhere, whose son was diagnosed at 2 ½ years old, an atypical reality for Black youth who are generally diagnosed with ASD an average of more than three years after their parents expressed concerns about their development according to a study cited by the American Academy of Pediatrics. In fact, a lot of Blacks don’t get diagnosed until they’re adults, like former NBA star Tony Snell, who received his diagnosis at 31.
Delayed treatment
The Autism and Developmental Disability Network (ADDN) reports have noted that more white children are identified with ASD than Black or Hispanic children, even though research shows ASD affects Black, Hispanic and white children equally. Previous studies have shown that stigma, lack of access to healthcare services or low-income are potential barriers to identifying children with ASD.
Hispanic children are 65% less likely and Black children 19% less likely than white children to be diagnosed with autism. This difference means Black and Hispanic children with ASD may not be getting the services they need to reach their full potential.
And don’t forget racist biases.
A 2007 University of Pennsylvania study found that Black children on the autism spectrum are 5.1 times more likely to be misdiagnosed with behavior disorders before they are correctly diagnosed with autism. In other words, Black boys said to exhibit “bad behavior” often have ASD.
Cultural frustration
Being an Afro-Latina, Madhere says she sees one of the biggest challenges coming from both the Black and Hispanic communities – a lack of cultural acceptance.
“People of color in the diaspora tend to not want to accept mental health challenges, generally. It’s like if there’s an aunt that’s loca (crazy), she’s just loca. But the aunt needs some help. That’s a big cultural thing. I think that has been a challenge for us. And the fact that we are hypervigilant about how our children are treated in spaces to begin with. I know for me, it was very challenging when I would take my son places and he would just throw these uncontrollable tantrums, these outbursts. And you hear, ‘That child’s bad.’ Just kind of having that social stigma of you already being in this frustrated place of like, ‘I don’t know what to do with my child.’”
School challenges
“And then, on top of that, a Black child in the educational space, you definitely have to be on top of educators, on top of administrators, so they understand that these are the needs that my child has. ‘This is not a behavioral issue. My child is not a distraction in the classroom. My child is not a problematic child. My child just thinks differently and has different needs,’” shared Madhere, who added that an IEP (individual education program) was huge for her son.
How about the parents?
For parents, receiving the diagnosis that their child has ASD brings about multiple feelings, including confusion, stress, shame and avoidance (not accepting or dealing with the reality of the diagnosis).
“I was in denial,” said Denise McKizzie, parent of an ASD child. “And it’s okay; it’s not a negative thing if they have this label that they learn differently.”
Madhere says once informed of a situation, she can deal with it. This attitude allowed her to accept the reality of her son’s ASD diagnosis and move into figuring out next steps.
“I know that’s not the same experience for a lot of people. And I think that mothers do ask themselves, ‘What can I have done differently? Is it partly my fault?’ I certainly did go through that emotional journey with myself, like how much of this did I contribute to. But again, the more I educated myself, I was like, ‘It’s not my fault.’ So, that emotional journey, I had to go on.”
Advice
Black parents share these pieces of advice for creating the best outcomes for your ASD-diagnosed child
Gain acceptance of the reality of the diagnosis.
Find a support system, especially a community of other parents with ASD-diagnosed children.
Take advantage of local, state and ISD support services. Services may include behavioral treatment, waiver services, personal care assistance, occupational therapy, speech therapy, educational services, one-on-one or group treatment sessions, support for the whole family and more.
Be open to services offered outside the Black community.
Recognize that like all children and adults, ASD-diagnosed individuals have their “thing” that they’re interested in, and nurture it, be it acting, martial arts, reading, etc.
Get educated. Make Google your best friend.
