What Does "Quality of Life" Mean for My Non-Verbal Autistic Son?

by CHOO Kah Ying

*A Mother’s Wish blog contains a treasure trove of insights. We have deliberately not created a paywall for our mission to share accurate insights about the inner lives of autistic individuals with everyone. But we would be most grateful for an SGD10 payment of love and support if you feel you have benefited and are in a position to help us continue our mission. A new digital photograph of Sebastien's artwork is available each time we upload a new post. Thank you!

When we talk about the care of an autistic individual, there is so much angst and focus on how different autistic individuals are from the rest of us. Many therapies are built upon the promise that they will get autistic individuals to behave like the rest of us.

Yet what I have learned from building a life for Sebastien, my non-verbal 28-year-old autistic son, and counseling families struggling with raising autistic adolescent and adult loved ones, is that positive change comes when we place the autistic individual as the EpiCenter of the Ecosystem of Care (A Mother’s Wish’s EpiEco). 

What does that mean? It means suspending your expectations about what’s wrong with them and how they are supposed to be and being curious to know who they are on the inside. This requires observing how they interact with others and the world around them in their “atypical” ways instead of concluding that they have nothing to say just because you are waiting for them to speak to you in your word-centered language.

The reality is that non-verbal autistic individuals are powerful communicators, whether they are using words or not. The problem is that we don't try to listen and understand.

In recent years, as Sebastien feels heard more and more, we can see him changing before us. Without us expecting anything, Sebastien is showing growing concentration on his art,

Sebastien focuses on his painting without once looking up at the windy environment; such weather conditions would typically affect him in the past.

expressing joy in the activities he loves,

Sebastien expressing his joy fully in the ocean

tackling new experiences,

Sebastien sawing a bamboo pole to fix his garden's roof

and feeling interested in social interactions,

Sebastien imitating "talking" and my carer noticing his playfulness.

even when interacting with people for the first time.

Sebastien receiving a massage for the first time from this masseuse and feeling relaxed enough for both parties to feel safe

This change has been achieved, NOT because he has become more like us. Rather, he is connecting more and more with us because he knows we are invested in supporting his authentic self — atypical and all.

Now, isn't this what achieving quality of life for an autistic person in our mainstream world should be about — supporting him in being his authentic self rather than imposing our rigid definition on what that self is supposed to be?

Isn’t this what all of us are striving for? 

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