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The Stigma is Real

August 29, 2018
Kpana Kpoto
Community Voices
A Black mother and her son who has autism stand outside smiley brightly on a NYC sidewalk on a hopeful summer day.

“I am so sorry,” she said as she clasped my hands in hers with a look of sadness on her face. I had just told my son’s daycare provider that he was on the autism spectrum and was taken aback by her reaction to the news. She acted as if I told her that he had a terminal illness. I remember looking in her eyes and saying, “He is okay. We have our challenges but he is doing okay.”

I have repeated this story at countless workshops that I have given at INCLUDEnyc. I share it often because it shows that we still have a lot of work to do. The stigma of disabilities like autism is real. This is part of the reason why I am very passionate about INCLUDEnyc’s work to bring equity and access to young people with disabilities.

My journey in the disability world began when my son was found eligible for Early Intervention at two years old. He was diagnosed with autism at four and his ADHD diagnosis came at six. Since then, I have ridden the emotional rollercoaster of navigating complex systems such as the NYC Department of Education and the NYS Office for People with Developmental Disabilities. My son is now eleven and it has not always been easy, but we are persevering.

Ironically, as I have started more early childhood work at INCLUDEnyc, my two-year-old daughter is about to start Early Intervention for a speech delay. Her recent psychological evaluation shows “no red flags for autism.”

I became a part of the INCLUDEnyc family in April 2015 after the devastating loss of my second child when I was 18 weeks pregnant. Honestly, I do not know how I got the strength to go in for that interview. I hid my pain well. It was especially hard because during my first year here I had coworkers who were expecting.  

Yet I knew that I had to find a deeper purpose to my life. I wanted to help families as I had been helped. I wanted to provide guidance for them as they navigate complex systems in our disability world. Going back to work was therapy for me. I believed that if I helped others solve their issues, it would help me heal. I was right.

During my time at INCLUDEnyc, I have spoken to parents who are afraid to get their child an IEP because they do not want him or her to be labeled for life. I have spoken to parents who reject certain schools because they do not want their children to be around “those children.” In those moments, it can be tough for me because I am not just a professional trying to help a parent through their issue. I am also a mom of one of “those children.”

When I speak with parents through our Help Line or at a workshop, I get it. I really do. I often use my personal story to connect with the parents that I help. It breaks my heart when I hear stories of a five-year-old being bullied or a three-year-old going without services for almost a year.

But for every sad story, there are triumphs. There is the child starting the Horizon program in September after her mom was discouraged from applying by her child’s preschool. There is the little boy getting ABA in Early Intervention when his mom had no idea what it was when she called 311. There is the parent whose eyes have been opened to a new world of information, resources, and support.

Our system needs a lot of work, but I am grateful to work at an organization that supports my professional and personal journey through it.