ASD autism behaviors black girls black mothers disabilities disparities mental health
What We Can Do for Black Girls with Autism8/06/2015
by Anna Gibson When “B,” a Black girl from Detroit, MI was diagnosed with autism, she was very young. When her mother, Kristen, spoke wi...
When “B,” a Black girl from Detroit, MI was diagnosed with autism, she was very young. When her mother, Kristen, spoke with me, she told me about the first time her child got on a roller coaster, despite the environment that would normally over-stimulate her.
Children with autism are typically very sensitive to light and sound. This makes certain environments hard for them to stay in for long periods of time. She says, “One of my son's went up first. We were standing in line at one of those ‘devil drop’ roller coasters. I stayed back with 'B'." When my sons came down, “B” looked at me and said, “My turn!” That was a really happy memory for me.” “B” is extremely creative, intelligent, and curious about the world around her.
The National Institute for Neurological Disorders and Stroke defines Autism Spectrum Disorder (ASD) as “a range of complex neurodevelopment disorders, characterized by social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behavior... Although ASD varies significantly in character and severity, it occurs in all ethnic and socioeconomic groups and affects every age group.”
There are a number of different organizations that work to spread awareness about autism, such as Autism Society and the National Autism Association. According to the NINDS, “Experts estimate that 1 out of 88 children age 8 will have an ASD. Males are five times more likely to have it than females.” We rarely hear about an extremely underrepresented subset of children affected by on the spectrum: black girls and women.
Autism is rarely discussed in relation to girls. This could largely be because they make up a very small category of children on the autism spectrum. It’s estimated that only one-fifth of girls are estimated to be on the spectrum. There seems to be a complete lack of discussion surrounding black children with autism. Black girls make up one in every 256 cases of people on the spectrum. To add to this, people rarely hear about the overlapping struggles that affect black girls who deal with autism.
Kristen is the mother of four children. She’s married to her husband, Asa, whom she loves dearly. She’s also been a stay-at-home mom since 2009 and demonstrates her patience and heroism by advocating for other women of color who have sons and daughters with special needs. She says, “I’m committed to finding out what works. We need to support our parents and children with special needs. I have a concern for children with autism, especially girls. I don’t think that dialogue surrounding girls dealing with autism is as robust as it should be.”
It can’t be denied that black boys also have a wide array of misconceptions projected upon them simply because of the color of their skin. For most parents this can create an immense amount of anxiety that their child might become the product of discrimination, and police brutality.
According to Kristen, raising a black girl with autism creates a unique set of challenges both within and outside of our communities. “Our attitudes towards girls who have special needs are a little different. When my daughter was very small, people in our family thought she had an attitude. They would ask, ‘Why isn’t she talking to anybody?’ I had to explain that she was non-verbal… I also worry about what’s going to happen as she continues to develop as a young woman. She’s already getting curvy. We project so much onto our girls. You have to be vigilant and defend their space.”
There seems to be two rival camps that people fall into when discussing autism. On one hand, organizations such as Autism Speaks are dedicated to finding a cure for autism. They tend to approach it like a defect that needs to be corrected. In opposition to this perspective, there are people who celebrate autism as a form of neurodiversity. These people cite that children with autism simply see things with a different lens and that trying to ‘fix them’ is harmful.
There are many parents with children on the spectrum who voice their dismay at having children with autism. ln response to this, Kristen urges parents to focus on their child's gifts instead of their weaknesses. There are many rewards to having a child on the spectrum. As such, it’s exceedingly important to notice these rewards to foster a better relationship with the child. In regards to “B” she says,
“Most days you have to walk a fine line between looking at it as a gift and a curse. For instance, she has a phenomenal memory and ability to problem solve. She also has a great eye for photography. She has hundreds of pictures on her iPad.”According to Kristen, it’s really about adjusting to the challenges of having a child on the spectrum. While finding different ways to accommodate a child on the spectrum, it’s important to envision a bright future for them. “As opposed to fiercely looking for a cure, we need to try to find a new normal, where we can visualize her living independently, maybe have a job, drive a car, or even cook a meal for herself,” she says. “Count the victories. We try not to take for granted the fact that she’s doing the things she does.”
While autism is a challenge, Kristen has some advice for mothers who have children with autism.
“No matter what, you are the expert of your child and innately qualified to make decisions about your them as long as you’re learning, and seeking out the resources that work best for you. Don’t blame yourself. There’s nothing wrong with you.”Kristen also speaks about the necessity of support from family, friends, and institutions. “Seek out others who have children on the spectrum. They’re a huge support, especially when times get hard. Also make sure you check out local associations and summer camps that may be going on in your city. Remember, you haven’t lost anything by having a child with autism. You just have to reset, create some new memories and a new path.”
Autism is a condition that affects children across the world. It’s important we make sure we protect them, no matter what ethnicity they are. However, we also have to take into account the overlapping perceptions through which the child will be seen both racial and gender specific. Having a black girl on the spectrum carries with it a unique number of challenges and victories. However, in order to embrace these victories, we have to first confront questions of race and culture that impact our most vulnerable: black girls.
Anna Gibson is a freelance writer in Detroit Michigan and student at Wayne State University who focuses on tell the stories of those on the margins of society. If you want to talk to her (and why wouldn’t you) you can reach her on Twitter @TheRealSankofa and on Facebook where she’s hanging out under the name Anna Gibson