How it All Began: A Journey Through Shadows and Light

Before April comes to a close, I want to highlight April as Autism Awareness Month, a time when the world reflects on the experiences of those with autism and their families. As I scrolled through social media today, I was cloaked by a wave of memories, most notably, my son’s journey with autism and my own path as his parent. The fight for resources and understanding in the autism community is ongoing and critical. Despite the advances, the stigma remains strong, and I often wonder what this relentless battle means for the caretakers and families of individuals with autism.

Twenty-five years ago, I remember the day I took my son to the doctor along with his mother. He was just two-and-a-half, nearing three, but I noticed he had not reached typical milestones. He did not attempt to form words, and he was not walking. Our hearts were heavy with concern; we needed answers.

After a brief examination, the doctor delivered a harsh reality. He validated our fears but did so without compassion or empathy but a chilling threat: if we did not take more action to get our son’s help, he would report us to protective services. The words echoed in my mind, “Your son may never walk or talk.” We found ourselves in need of help, yet instead of support, we faced criticism from the individual we approached. The rumination and increase in anxiety were real.

In that moment, a surge of emotions surged through me fear, anger, and despair. How could I navigate this system when I felt it was viewing me as the problem? As a young black parent, I felt the weight of stereotypes pressing down on me, labeling me an unfit parent.

When I was growing up, I often heard people say, "What happens at home stays at home."

“Don’t tell those white people our business because they will use it against you.” The very notion that someone might think I was neglecting my child left me furious and made those comment above more of a reality. I could feel in that moment why Blacks suffered in silence.

Yet, amidst that storm of emotions, I had to push my anger and fear deep down. My son needed me; his well-being took precedence over my feelings. We began to research, desperately searching for a way to understand what was happening with him. Because of our thorough efforts, we reached the regional center, where he received an evaluation and was diagnosed with autism.

The journey to this diagnosis was everything but simple. Advocating for the assessment took weeks of phone calls, paperwork, and emotional strain that felt insurmountable. I often pondered how to raise a child with autism. How would this affect my other kids? How could we afford the support he needed? We had barely managed to secure a place to live after being in a shelter for two years. It felt as though no one had the answers, and indeed, no one seemed to care.

Even though I was parenting alongside his mother, I often felt profoundly alone. In those moments, I questioned why she did not share my sense of urgency. With time, I realized she was enduring her own struggles, but in my narrowed focus, I failed to see that. She was an adult and needed to deal with her issues. He was a child in need of care, support, and affection.

What became paramount was that my son had an autism diagnosis. Nothing and no one would deter me from ensuring he would walk and talk. Every time someone told me he would not, I held onto my faith. This determination was a blessing, giving me strength and focus, but it also turned into a curse. I became excessively focused, ignoring the anger and pain that needed an outlet. Can you picture its internal impact on someone? I had to smile, while continuing to be a provider, supporting the family as a whole and continuing to parent an autistic child.

I came from a background of being parentless, homeless, and abused, a survivor in every sense of the word. This diagnosis would not defeat me; I was thing this to myself as if I were the one that was diagnosed with autism. I declared that I needed to be “everything” with unwavering conviction. My son’s journey became my mission, and no obstacle would sway my resolve.

As I reflect on these memories, I realize that the path has not been easy, but it has illuminated my strength as a parent and an advocate. My son's journey is part of the larger narrative around autism awareness, highlighting the everyday challenges and successes experienced within our community. As we move forward, I carry with me the hope that our experiences will foster understanding and compassion, paving the way for a brighter future for my son and all those like him.

I have decided to share excerpts from this journey as way to enlighten those who may lack the understanding of the journey of autism. To normalize what it means to be a family that includes a person of autism and to heal pieces of myself that have gone unrecognized.