A Sanctuary for My Autistic Son: A DEI Perspective on Autism
When I posted the video of Sebastien, my autistic son, sitting on a swing near a waterfall, I hadn't known that its idyllic quality would resonate with so many people.
But this video is significant not only because of this beautiful spot but also in the way that Sebastien was swinging so tranquilly and so happily, thus making it possible for Hari, my dedicated carer, to capture these moments.
None of this took place overnight. Rather, it was a culmination of a long and heart-wrenching journey of seven years of overcoming logistical challenges, multiple changes of carers who took on the job just for the money, and our constant endeavour to learn how to relate to Sebastien with our mutually preferred languages of English (us) and actions (Sebastien) was it a case of logistics.
Most significantly, it required me to become a very different kind of parent — one who had to let go of her autistic son and take a leap of faith in striving to find substitute caregivers to help me sever our umbilical cord. Without this, Sebastien would not have been able to achieve psychological independence as a 27-year-old man pursuing his life without me by his side. I had to learn to be a mother who could at once miss Sebastien and still be happy about our separate lives.
How we have arrived here and my learning about autism has been a message I have been sharing with individual families in crisis with their autistic adolescents and adults and educational videos that we created last year:
The greatest challenge faced by an autistic individual isn't their autism but our (neurotypical individuals) struggle with their differences and inability to understand autism from the inside out.
With this shift in perspective, the objective shifts from placing 100% of the responsibility on the autistic individual to change their behaviour to fit into mainstream society to a shared responsibility through mainstream society learning how to accommodate them as well.
It is an equitable approach that celebrates their diversity and genuinely includes them.