I first shared a version of this on LinkedIn during Autism Acceptance Month in April 2024.
My son Lucas is a non verbal, not fully independent, autistic young man. He was diagnosed when he was about 2 years old. He’s now 27, so for the last 25 years of our lives, we’ve dealt with whatever came our way in managing his disability. Finding a special school, trying out speech/ occupational/ music/ you-name-it therapies, dealing with meltdowns, tackling public toileting needs, figuring out how to avoid dustbins … we’ve been through all sorts.
Then, in the late 1990s, little was known about autism. When I was first told about it, I didn’t know a single person who has it or lived/cared for an autistic person. I read everything I could get my hands on or find on the internet and oh boy, was it a roller coaster journey. Over the years, we’ve accepted that while he has the purest of heart and is mostly obedient and always happy, Lucas will always need adult supervision.
Today most are aware of autism. But are they fully accepting of the presence of persons with autism in their school, work, neighbourhood, society?
An incident happened a little over a month ago. Lucas attends the Day Activity Centre at St. Andrew’s Autism Centre. Most days I’d drive to pick him home but when my schedule permits, we’d take the bus instead and from the bus stop, it’s a 15-minute walk to our home. We do this so that I can observe & correct his behaviour on public transport, teach him road safety (major fail there!) and general situational awareness. I usually let him walk a few steps ahead of me to lead us home – still within arm’s reach so that I can grab him before we cross streets.
On that day, he was making his way through the 5-foot way and it was a particularly crowded day. Navigating around the people, I could see that he was about to bump into a woman on her arm. Before I could react, he did exactly that! The woman did not react well and she was about to yell at him. By then I was next to the woman – Lucas had continued walking on, oblivious – and I said to her “I’m sorry. My son’s autistic. He’s not aware of what he’d done.” and hurried on to catch up with Lucas. Most times, people accept and recognise the incident for what it was – an incident. The woman however shouted at me “Why don’t you take care of him better.”
Even though I was already a few steps ahead by then, I instantly swung around and said “Why can’t YOU be nicer!” I turned back quickly to catch up with Lucas as we were reaching the road junction. I was overcome with a myriad of emotions – fury was one; remorse for reacting the way I did, and then yes, fear and despair for Lucas. Even as I write this, I feel the same fury and fear. Until today I’ve not shared this incident with many. I couldn’t talk about it without losing it a little.
I spoke with my coach (yes, I myself do have a coach) about the incident and how I reacted. The extent of the impact the incident had on me surprised me. I’ve accepted and lived with his disability almost all his life; I’m rather easy-going in my parenting, so why did I react that way? Perhaps at its core, I felt my ability to parent him was questioned and in that moment of weakness, my defenses were down.
Have you ever felt your parenting challenged in any way?