Autism Awareness Q&A: Strengths, Challenges, Thriving
Autism Spotlight Q&A: Unique, Yet Universal, Lessons
“Help your spectrum babies find their niche.”
At Monjae Collective we recognize our interconnectedness and therefore uplift the changemakers across Africa and the diaspora bringing holistic awareness to important issues that impact our global village. The month of April is dedicated to autism/autism spectrum disorder (ASD) awareness. Each person with autism has a distinct set of conditions that include strengths, and challenges with social skills, repetitive behaviors, speech, and nonverbal communication. Symptoms typically appear by age 2 or 3 and as early as 18 months; some people are diagnosed in adulthood. More boys are diagnosed with autism than girls; although there are several theories as to why, the reasons remain unknown. What research is clear about is that early intervention leads to positive outcomes later in life.
Autism is a growing part of our consciousness given the uptick in testing and effective diagnosis; improved medical recognition and intervention; and due to increased visibility and advocacy. The sad truth across our communities is awareness is often lacking, some are mis- or never diagnosed, while many lack access to resources and adequate support in the face of a diagnosis. Henrie Johnson’s vocal yet unassuming advocacy is both notable and laudable; she is mother to Josh, who is thriving in his journey living with autism. In this Q&A Liberian-born Henrie shares some insights into her family’s unique experience; my main and surprising takeaway was the universal applicability of many of Henrie’s words of wisdom.
Knowing autism exists on a spectrum, in what ways is Josh differently abled?
Most people are not born with the gift of perfect pitch. Many professionals spend years in training to acquire that skill. He was born with it. He also has a photographic memory.
At what age, and how did you begin to realize he had autism? Were there noticeable or obvious symptoms and did your medical background play a role in this recognition?
I always had a sense that something was not 'quite right'. He wasn't progressing like I thought he should have. For example, at 2 years old he still did not know how to kick a ball and lacked spatial awareness. Right before his third birthday I took him to see a developmental pediatrician and received the diagnosis. I was not in the medical field at the time.
As a parent of more than one child, in what ways do you parent similarly and/or differently?
For the most part, the rules apply to both of my children, but that's because Josh is high functioning. One thing I do differently is purposely redirect him when he is in frustrating situations. I've learned that perseverating on things when he's not at his best makes him more defiant. Calmly talking through an issue, redirecting to something else, and circling back works better.
In our community it is sometimes challenging to be vulnerable, and at the risk of stigmatization. What’s behind your brave choice of sharing Josh’s and your family’s journey with us all? (Thank you, by the way.)
I've never seen autism as his plight. It's a platform for his testimony. It helps that I typically don't care what people think.
What considerations would you like to share?
Most kids on the spectrum have unique gifts and skills, especially in the arts. Explore different extracurricular activities. Invest in areas that pique their interests. I only found out that Josh had a keen ear because I bought him a keyboard. I know a Kenyan lady who only found out her son was an expert at beading because his teacher handed him beads to distract him. Help your spectrum babies find their niche.
Any advice for parents, coworkers, and acquaintances of someone on the autism spectrum?
Pray like your kid's future depends on it, don't compare your kid to any other kid on the spectrum (they're all uniquely made), and be your kids' greatest advocate, especially as it concerns their education.
Have you been able to find community in this journey?
Yes. Josh was blessed to attend a great private school for autistic kids from pre-K to 2nd grade. His teachers were as much his advocates as I. When we moved to a new state, his new lead special ed teacher took him under her wings. I owe her so much. I call her Josh's Mama #2. She doesn't teach him anymore, but I consider her family now. Our church families, both in Florida and Georgia played a great role in offering support as well. His Sunday school teacher even drove by to see him during the pandemic. Jazz Ambassador, Myrna Clayton, once heard him play and has been looking out for him ever since. She even pays for some of his piano lessons. Yes, we do feel the love everywhere he goes.
Thanks to Henrie for sharing Josh and her family’s story! For additional information, resources, and community, the organization Autism Speaks is a great starting point. Someone in my network who attended school with Lola Dada-Olley’s brother, Wale, shared this inspirational TEDx talk, Your Path is Your Purpose. Check out Lola’s Not Your Mama’s Autism podcast covering her family’s multigenerational autism journey beginning from 1989 to present. For more inspiration, I once came across a story of a man on the spectrum who painted the entire New York skyline from memory. Watch here. Imagine a world where we tapped into everyone’s unique ability and potential!
Thanks to Henrie for sharing her family’s journey and purpose, and for imparting wise, universal, and inspiring lessons along the way.