Fourteen years ago a doctor gave my then three-year-old a grim diagnosis of autism. My husband and I sat in a somber silence as we listened to a pediatric neurologist — with a less than warm and fuzzy bedside manner — rattle off all the things our boy RJ “would likely never do.”
Imagine someone emotionlessly telling you your toddler would never have friends, go to a mainstream school, or participate in group sports. Oh, and he would never say unprompted, “I love you, mommy.”
We call it the “never day.” It was impossibly sad.
After I cried my eyes out for what seemed like days, weeks even, I grew angry - angry that someone who spent one day with my boy thought it was ok to place such limitations on his future. How did she know all of this? Every child with autism is different. How dare she define my boy before she got a chance to see me advocate for him. “Hurricane Holly” had not even reached a category 3 yet! I was just beginning to roll up my sleeves!
I knew one clear fact about autism back in 2000: The earlier you intervene with a child, the better his chances to become a functioning member of this fast-paced human race. So the clock was ticking. The journey was at times tedious, monotonous, maddening and rewarding, fulfilling and illuminating. It challenged our marriage. It thickened our skin to armadillo levels. Most of all, it made us look at the world in a compassionate and much less judgmental way.
Then we discovered we were the lucky parents. Most black and brown children are diagnosed with autism 2-5 years later than other communities. So that crucial early intervention window gets missed. When diagnosed, these same children have less access to resources and services. We figured out quickly that given the platform we had, it was a no-brainer to advocate for other families who struggle with the daily emotional and financial pressure autism often brings.
Our mission to help autism families was manifested through the HollyRod Foundation, an organization originally founded by Rodney and me in 1999 to provide compassionate care for Parkinson’s disease patients and their families. My late dad, Matt Robinson, was diagnosed at the tender age of 46. We expanded the mission to include autism because like Parkinson’s disease families, they need help just to get through their daily lives.
We’ve installed “RJ’s Places” in autism centers which provide state of the art technology to help verbally-challenged kids with autism communicate. We’ve been able to fund speech and social skills camps.
We’ve written books: “My Brother Charlie” and “Not My Boy!: A Father, A Son, and One Family's Journey with Autism.”We speak all over the country to families that often just need to hear that someone understands what they are going through.
I am always putting him through mock police drills in case he gets stopped while walking on the street in our neighborhood. I even took him to the local police department and introduced him as a precautionary measure.
It has been a blessing to be a blessing to somebody else and quite frankly it helped us cope with our son’s autism as well.
Our RJ is now 17. He goes to mainstream school. He has a few friends. He plays sports and he says, “I love you, mommy” on a loop! (Especially when he wants something!) I thank God every day that he has language and that he can self-advocate but adolescence has been a gauntlet of hurdles that we were not prepared for.
Like all moms, I worry about my son. He’s a 17-year-old, 6’2” African American man with quirky ways. He reads and reacts to social cues differently than other teens his age. I am always putting him through mock police drills in case he gets stopped while walking on the street in our neighborhood. I even took him to the local police department and introduced him as a precautionary measure. It is my worst mommy nightmare that he’d find himself in a Trayvon Martin situation -- at the wrong place and the wrong time when some tragic “misunderstanding” ensues.
Most black and brown children are diagnosed with autism 2-5 years later than other communities. So that crucial early intervention window gets missed. When diagnosed, these same children have less access to resources and services.
And so we continue to advocate and speak out for those who are rarely heard.
The best news? It is the beginning of Autism Awareness Month, something that did not even exist in 2000 when we first got our autism diagnosis. The diagnosis was closer to 1 in 250 then. Today it is 1 in 67.
It is my hope that sharing our story will continue to shine the light in the dimly lit corners of the country, especially for the areas where the need for early diagnosis and intervention is the greatest.
[The HollyRod Foundation is dedicated to providing compassionate care to those living with autism and Parkinson’s disease. This April all net proceeds of the Stella & Dot Visionary Bracelet will benefit the HollyRod Foundation]