By Grace Clark
A NEW COLUMN ABOUT AUTISM TO INSPIRE, INFORM AND ELEVATE VOICES ON THE SPECTRUM
The first time I heard my son call me ‘mama’, he was three years old, and I was holding down his flinching body in a chair so a doctor could draw blood to send it to a lab overseas to help figure out a treatment for his autism – or so I was told. He was non-verbal and to my surprise, screamed out in distress the word, “Ma!”, in a tone desperately pleading for me to stop the needle from being pushed into his arm. I remember it always, like it was yesterday. It was 17 years ago and the last time I ever did that. Today, my still non-verbal son, Cashan, is what people might call a ‘mama’s boy’ – emotionally attached to me with more reliance than most sons would have on their mother at his biological age. While Cashan is unaware of his differences to typical peers, I think he somehow knows my fight for him through the challenges of his neurological disorder for two decades. I am just as attached to him. He has certainly made me a more compassionate, observant, attentive human being, and mother. These days, he screams ‘ma’ randomly, now and then, when he really wants to get more of my attention – like to get extra Oreo cookies, is anxious about something not happening quickly enough, or if there is an unexpected change in his routine. Cashan, like many on the autism spectrum, is sweet-tempered with a bit of mischievousness as he tries to figure out what he is and isn’t allowed to do. Depending on any variety of factors in whatever environment we’re in, it will be a good life moment or a very challenging one. Every moment of every day is different. That is autism.
Rigid routines, challenges in verbal communication, lack of social skills, repetitive actions, sensory sensitivities to the environment and uncontrollable behaviors, are all among the characteristics of Autism Spectrum Disorder (ASD). There are also characteristics of heightened talents unseen. It is certainly a spectrum. While many individuals with autism share similar characteristics, none are the same. People have perceptions of what autism is from movies, like actor Dustin Hoffman’s portrayal in the film, Rain Man. The mistake is to think there is one definition. People having limited knowledge of autism often leads to them to glaring at individuals with autism in public settings with negative judgement and misperceptions.
I did not know anything about autism when my son was diagnosed at age two; today, there is more social awareness of it, and I am almost embarrassed to admit that. I was then what I thought was a well-read television and newspaper journalist in Connecticut. I would quickly find out that a lot of people of color like me did not know what autism was either. That was even more the case with others also of West Indian descent. I discovered in some statistical research and talking with a few doctors about the disparities in care for children of color on the autism spectrum, that my fellow Jamaicans along with some Black and Indian Americans did not publicly talk about it. Instead, behavioral challenges and developmental delays were more often a well-kept secret out of pride and fear of family and social ridicule.
As I began to go to conferences to find out more information about autism, I was usually one person of color in a sea of hundreds trying furiously to get as many resource pamphlets as possible that I could carry. Since then, I have met many other parents of all races and socio-economic backgrounds, and youth and young adults in education and social settings. Autism does not discriminate. I have formed bonds on the journey with strangers who have become like family. We share stories between us as if we have been friends for years. Ultimately, we just want people to know our journey, help us through it and not for ourselves, but for our child who we breathe for at every age, as they scream for help with no words.
Welcome to my first column for Northend Agent’s. It is very fitting that it begins this Autism Awareness Month – I celebrate every parent and person living with autism. I hope that each of my columns that are published in the second issue of each month informs, inspires, incites conversations and awareness, and reminds families that people with autism are not wholly defined by a diagnosis – that there are triumphs to be embraced through the undeniable challenges and voices to be heard.
Grace Clark is a married mother of three young adults, including her youngest son who has inspired her advocacy work in the autism arena for two decades. She is founder of S.O.A.R. (Spectrum Opportunities in Arts and Recreation), a program for youth and young adults with autism; has been the keynote speaker at the Connecticut State Capitol for Autism Awareness Day; has written previous columns about autism; and given numerous talks on the topic at news media appearances, panel discussions and events. She is also a broadcast-print journalist, theatrical stage actress and director, arts marketing communication professional and educator. A native of Kingston, Jamaica, Grace was reared in the Northend of Hartford, Connecticut and is honored to have the opportunity to share her autism journey in the Northend Agent’s. You may reach her with comments or inquiries at autismsoar@gmail.com.
