When my son Joshua was born, I cannot begin to tell you how happy I was! I had watched video’s and read books and was so “prepared”! I had everything down and was excited to take on this new venture.
As life would have it, he was diagnosed with Autism at 2 ½ and that is when our life changed. I was not “prepared” for autism at all, there were so many unanswered questions, so many dashed hopes, so much unacknowledged and unspoken grief I felt lost. Not only did I have to worry about having a black male child, I also had the to add disability to my list of worries. However, I never once wished that things were different, I embraced my new role as only I know how with grace and dignity.
I had to mentally prepare to access various systems for supports and services. Let’s be honest, navigating any system can be challenging but navigating those systems as a black woman is super challenging. Not only do I have to explain my child to providers, I also have to explain the intersection of Race and Disability and how those two impact our daily lives. The most difficult part is when people just don’t get it; or they try to separate the two as if by separating his race from his disability will somehow make things easier. Newsflash it doesn’t. Some of these hidden barriers are implicit bias, microaggression, and racism to name a few.
When I am engaged in conversations with different providers, I always ensure that they understand that I bring a more to the conversation than just a boy with autism, I bring a black boy with autism and all the fears and anxieties and worries that go along with that. When providers think I am non-responsive or disengaged, I want them think instead “she may be worried about how her son is perceived in the world; she may be worried about his future; she may be worried about the impact of his disability and race on how he will be treated.” By shifting the thought process and acknowledging the experiences of parents like me, it allows for open and honest conversations which will allow parents like me to receive the assistance that we need from culturally responsive providers.
To bring awareness and improve service delivery, I have founded Living Autism Out Loud, LLC. Please check out my website for my information.