Black families face so much scrutiny in a colonized world for our children’s behavior consistently. Navigating Blackness and autism can take some finesse and a lot of advocacy, which is why I was excited to chat with Faduma Bulale, a regular mom turned outspoken advocate, who is helping other parents learn how to be better advocates for their autistic children. Listen to the latest episode below:
Autism is a hot-button issue, with Black children squarely in the center. And if you’ve been following me, you know that my own daughter, while not officially diagnosed, is most likely on the spectrum. Gia is 2.5, non-verbal (doesn't speak actual words), and has some sensory processing issues. Talking with Faduma I found myself relating to her struggle to get her son evaluated and feeling unseen and unheard by medical professionals. According to a study done by the American Academy of Pediatrics, "Black children with autism spectrum disorder (ASD) were diagnosed an average of more than three years after their parents expressed concerns about their development"
“These delays are believed to play a significant role in an even more serious health disparity which involves the proportion of children with autism who additionally are affected by intellectual disability (ID),” author John N. Constantino, M.D.,
Unfortunately, this occurrence isn’t uncommon, and undiagnosed school-age children are often labeled as troubled, antisocial, rude, disrespectful, and/or disruptive, then punitively punished (one part of the school to prison pipeline) or placed in special education classes that do not address the child's individual needs. Now I know some of you are like, wayment...I thought Black children are diagnosed at greater rates with things like ADHD or Autism? Well, the issue is that they're being "diagnosed" at schools after numerous behavioral problems that educators aren't equipped to handle in a punitive way. Which is why parents have to take the lead on being their child's advocate.
Faduma introduced the very important idea of advocacy being a preventative measure because, as the saying goes, if you stay ready, you don't have to get ready. Preventative measures help humanize your child and set both child and caregiver/teachers up for success.
Here are Faduma's tips to advocating for your child:
1. Decolonize your thinking and educate yourself! The unpacking never ends Fam. Many of us, myself included, felt a sense of loss when we realized our children were not developing "normally". Let's idea of normal and let go of any expectations we may have had over our children's lives. And then educate yourself as much as possible. The only way to be an advocate is to knowledge about what you're advocating for. Information is power, and parents need to start with the facts about their child's special needs. Try and keep emotion out of it; parents need to have fact-based knowledge from their child's doctors, specialists, special education experts, parents of kids with similar special needs, attorneys, teachers, and anyone else who can provide information.
2. Talk to the RIGHT medical professionals. Regular pediatricians are not equipped to diagnose your child, so seek out specialists that will help you if you feel your child is falling behind on developmental milestones like a Developmental/ Behavioral Specialist.
3. Ask Lots of Questions and Listen to Answers When things happen involving your children for learning and discerning purposes it’s important to ask why. All behavior is communication with all children. So an issue arises at school, always ask what happened beforehand? What triggered this behavior? What was your response? This helps you get a clearer picture so you can be solution-focused. Become like a reporter: Ask questions like, "who, what, where, when, why and when" and then listen carefully to the answers you receive. Research relevant questions and then document responses instead of simply relying on your memory. Learn how to best ask questions and don't come across as antagonistic or defensive to get the best open and honest replies. So make sure you're building a friendly rapport with your child's caregivers, teachers, and medical professionals. The more comfortable all of you are with each other, the better it is for your little.
4. Keep records and be an active member of Team (insert child's name here).
Have accountability for yourself and the way you treat and view your child and require accountability from school personnel and doctors by communicating in email so if there are any questions, you can refer back to your records. Most importantly though, make sure you're also co-creating your child's treatment plan. You know what them better than anyone else so make sure you're not leaving IEP's and 504 Plans up to doctors and teachers only. Parents typically have goals for their kids, and families of special education students should establish goals along with a strategy to obtain them.
5. Really Get to Know Your Child Care Provider or Teacher. Don't assume that childcare providers or teachers don't want to meet your child's unique needs and provide educational benefits. Most do. However, a wide range of need combined with limited resources often creates the potential for conflict between what reasonably can be provided vs. parents wanting what they believe is "best" for their kids. Parents and providers/teachers should do everything possible to establish a positive, partnership-based learning approach and team together.
6. Find your people. Connect with parents and advocates in your area or on Facebook groups. People that can help you figure out lingo you may not understand or vent your frustrations to. And if you need professional advocacy, check out www.autisminblack.org and www.thecolorofautism.org
My biggest takeaway from this podcast is the mindset shift many of us need to make for our children. It's easy to adopt the" fix it" narrative of the world that says autism is a part of your child that is broken. Your child is not broken. Your child doesn't need fixing. Your child is a unique manifestation of cosmic unfolding. Do the work to show up for your child continuing the work to be a more intentional, conscious parent. Don’t let your expectations for your child become their burden for your child. Let your child be authentically them however that
Faduma said she is always available if you need help. But please make sure you honor her time and if you can, pay her for her labor. https://www.facebook.com/mamabear.bulale
Also please make sure you leave a rating/review...some racists found my podcast and are tanking my reviews on purpose, so if you like this episode, please help a sista out. https://podcasts.apple.com/us/podcast/parenting-decolonized