We went to the #RunForAutism Awareness event this morning, organised by the Saturday Seawall Run Club. Great to see the turnout and to hear from some parents of young children with autism, sharing about their experiences. One asked for people to have more kindness, understanding and compassion. 💛 I’m glad to see initiatives here in Samoa seeking to raise awareness about autism.
Some members of our family have Autism Spectrum Disorder (ASD) and so it felt extra important to support the run today. Adding from our family’s experience –
1. ASD is a spectrum, including a very broad range of conditions, challenges with social skills, repetitive behaviours, speech and nonverbal communication. Autism can look different for everyone. Some have intellectual disabilities and some do not. Some need a lot of support in their daily lives while others live entirely independently. Many people with autism can also experience other medical, behavioural or mental health issues that further affect their quality of life.
2. Children with autism grow up to be adults with autism. Yes we do exist.
3. Sometimes, ASD can run in families. So much that previously undiagnosed adults with ASD may not recognise their child has ASD, because ‘theyre just like me…nothing unusual here!’ Sometimes its only when their child is diagnosed and the parent is learning how to advocate for their child, that they then realise they are ASD as well. (And what an eye-opening, brain-shattering road THAT is! Yes Im talking about me here.)
4. People with ASD can rely a lot on ‘masking’. Camouflaging. Where we learn, practise and perform certain behaviours so that we will fit in, and appear ‘normal’. We can become experts at this so our ASD isnt obvious. The downside? It’s exhausting. Imagine having to act as a different person every day, all day? What that would do to you in the long term? You need safe spaces in your life, your daily routine where you can simply exist and be your regular real self, without the mask. (Or else eventually you can crack and have a full on breakdown.)
5. When parenting a young person with ASD, we must carefully balance teaching them the skills and behaviours they need to live in the world outside our home AND also ensure they know their true self is loved and valued just as they are, that they don’t always need to mask. All while we are advocating (ie fighting) for that outside world to be more accepting, kind and understanding.
One brilliant and beloved Young person asked me once, in frustration – “Why is the pressure always on me to mask, to pretend that I’m like everyone else? Why isn’t the rest of the world learning how to be like us instead?!”
I confess that in our family we tend to agree that there’s nothing ‘disorder-ed’ about the ASD brain. (As their fiapoto mother, I maintain theres nothing wrong with our brains. It’s everyone else’s “regular” brains that are oh so boring and so ordinary.)
But as per number one on my list, this all comes from only our ASD experience, what it’s like for our family. I know it will be different for others.
I’m very grateful for what my children teach me daily. Their patience with me as I have messed up often (and no doubt will continue to get it wrong sometimes), learning thru trial and error how to better love and support them.
Thank you Saturday Seawall Run Club for making that safe space today for the conversation about autism.
We need it. Samoa needs it. 💛
Lani Wendt Young 