April holds a very special place in my heart since 2018, when I first wrote about the international observance of World Autism Awareness Day on makchic. The United Nations has named 2nd April as World Autism Awareness Day since 2007. Since then, many have gone on to celebrate it for an entire week, and some for an entire month.
For me, every day is Autism Awareness and Acceptance Day. My son turns 9 this year, and I am very grateful for the community of care partners who are supportive of one another on our journeys, alongside our autistic loved ones.
From surviving to thriving
This year’s World Autism Awareness Day observance theme is “Moving from Surviving To Thriving“. Getting our kids with autism to “survive” in this world without their parents someday seems like the humane thing to do. In fact, some may argue this has been the approach, especially if one has a non-speaking autistic child. This is not necessarily a wrong approach for parents to take when raising a child with different needs. I am not ashamed to admit; the worry of how my child will go on without me someday still keeps me up most nights.
ADL or Activities of Daily Living (such as learning to bathe oneself, brush their own teeth, make a sandwich, fold the laundry, sweep the floor etc) tends to become the focus for many at a certain point, or even at the early point of an autism diagnosis. Again, this isn’t wrong. For some autistics, mastering these activities and being able to do them independently is challenging, whereas for some, it’s easily mastered. Let’s not forget, autism is a spectrum, so no two autistics are alike.
The theme of “surviving to thriving” is quite meaningful. The word ‘thriving’ means to prosper and flourish. While we still need to teach our children to survive, we can also support them to thrive in this world. Let’s face it, not all autistics are savants. One in ten autistics are savants, and not all savants are autistic. So, when we say thrive, it is not only limited to the autistic savant community. It applies to everyone in the community; even the ones who meltdown everyday, have speech challenges, who don’t perform so well academically, or who still struggle to hold a pencil well into adulthood.
It’s not about setting the bar lower
To me, thriving is about allowing the individuals to thrive at what they are good at. For example, if your autistic child is good at playing video games, how about joining the e-sports community and learning about how he/she can thrive in that area. Also, thriving should not be conditional on what you think is best for your child. It is about them, not us.
Last year, we enrolled my son in football lessons. We found a great group of coaches adept at coaching children and adults on the spectrum. Like every other parent, we went all out; we got him football shoes, jerseys, football shorts and of course, my personal favourite, the long socks that most footballers wear. Yes, I also took many pictures and posted them like a proud momma bear on social media.
Concurrently, our son started acting up in different situations; at home, when going out, and even at school. When I discussed this with my parents (within earshot of my son), I noted that the only different part of his routine were the football lessons. After casually mentioning that perhaps he needn’t go for them, I noticed an overall positive change in my son’s demeanour over the next couple of days. He was more cheerful, and even his teachers in school agreed that he was in better spirits overall.
What we want vs what they want
This was a wake up call for me as a mother. My son is unable to communicate verbally, but he was telling me in his own way that he does not enjoy football lessons. At this point, I realised first-hand that what we think is good or want for our kid is not always what our kids want for themselves.
Fast-forward to another realisation this year. My son had the privilege of being cast in a Hari Raya television commercial (TVC) for his school. When the school approached me about this, I was of course over the moon, coupled with the fact that this TVC is intended to raise awareness and acceptance of autism. To be honest, while I welcomed this opportunity with open arms, a small part of me prepared myself that when we got to the set, there would be challenges and he might end up not being part of the TVC at all.
Behind-the-scenes with Haans at the TVC shoot
I also know how my son behaves differently around me as compared to when in school or with his teachers. Since the cast members were teachers from his school, I was brave enough to drop him off on set and go off. A part of me felt like hiding in a corner to take pictures. However, I knew if he even caught a glimpse of me, it was game over. He would run to me and not be able to do his scenes.
After two days of shooting, and a long exchange of text messages with his long-time Occupational Therapist who was at the shoot, my son had rave reviews from the production team and fellow cast members. The production crew had never worked with an autistic child before, and after working with my son, they were impressed at his ability to remember exactly where he needed to be when they needed to do several takes of a scene.
A bittersweet wake up call
This has by far been my biggest and most bittersweet wake up call. My son is able to thrive, even when I am not by his side. It also got me questioning myself: am I coddling him too much and holding him back, because I cannot be a part of what he can do well? The bittersweet realisation for me was that my child can thrive without me in this equation. If he gets another gig for another advertisement, I can’t be there to take the behind-the-scenes pictures, or be there to witness him thrive. While it makes me sad, it makes me immensely proud of what he can do.
So, I need to be brave. I need to walk the talk and give my son the chance to thrive and be independent. He has been showing clear signs of wanting to be independent – from deciding when he wants to take a shower, to the clothes he picks out himself from his wardrobe. My son is growing into his own person. In order for him to thrive, I must at times take a back seat and trust that he does not need me all the time. Perhaps, I need him more than he needs me.
This World Autism Awareness Day 2024, I would like to thank my son for being the best teacher I have ever had.
By Desiree Kaur
Desiree Kaur was in PR for over 8-years until she found her true calling in the education line. After her son was diagnosed with autism, she decided to pursue her Masters in Special Education. She enjoys writing and advocates inclusion for children of all abilities in every little way possible.
