Speaking Up for Profoundly Autistic Individuals Like My Son at APAC2025 — Autism Meltdowns Are Not Inevitable!

Asia-Pacific Autism Conference 2025 — Kah Ying Choo's Presentation on Nonverbal Autism Meltdown

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Profoundly Autistic Individuals: Conspicuous Absence

The Asia-Pacific Autism Conference 2025 boasted a gathering of delegates from 30 countries comprising researchers, clinicians, families, and autistic individuals (who can speak). Yet amidst this crowd that championed neurodiversity and the inclusion of autistic voices, there was a group whose voices were conspicuously missing — profoundly autistic individuals. In this vacuum, the prevalent representation by professionals and parents of profoundly autistic individuals — their need for extensive support, their lack of functional speech, and behavioural challenges (such as meltdowns) — tended to be bleak.

One of the chief reasons is their meltdowns — seemingly disproportionate outbursts of aggression, self-injury, and property damage. Many attribute these meltdowns to profoundly autistic individuals' inability to communicate in words. We think that if only they could say, "I'm angry," then they would not have meltdowns. Therefore, even though they have not progressed significantly through childhood, adolescence, and adulthood in using word-communication to express their emotions, we stubbornly persist in pushing them to communicate the way we do.

With my presentation at APAC2025 of a "loving response" to a nonverbal autism meltdown, I turned this perception upside down. Instead of lamenting about Sebastien's meltdown, I exposed my blindness to my insensitive behaviour towards him and my failure to acknowledge his expressive nonverbal communication. Had Sebastien not hit me, I would have been oblivious to my behaviour.

Understanding how we caregivers contribute to autism meltdowns — lessons learnt

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Introducing ALIS

In my e-book with Adi Hariyanto (Sebastien's carer) — EpiEco: A Breakthrough Approach on Profound Autism, we call his nonverbal communication ALIS — Authentic Language Based on Instincts and Sensing:

ALIS is dynamic, in-the-flow, and improvisational. Profoundly autistic individuals use their voices, gazes, fingers, every part of their limbs, and objects to generate one-of-a-kind messages for their audiences without inhibition. They are constantly updating what they are thinking and feeling inside based on their mindful processing of the outside world from moment to moment. So, contrary to common perceptions, profoundly autistic individuals are intensely social beings who are communicating all the time, waiting for someone to understand them.

Now, if we were to recognise that ALIS — their native language — is no less valid than ours, we would level the communication playing field, and enable them to connect with us. What it requires of us is a willingness to step out of our comfort zone. This is not more than what profoundly autistic individuals have been striving to do in their endeavour to acquire our ways of communication and norms, even though word-based communication and mainstream norms are foreign to their nature.

Profoundly autistic individuals' nonverbal communication is their native language.

Embracing profoundly autistic individuals' uniqueness is key to connecting with them.

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EpiEco: Respecting Profoundly Autistic Individuals

Recognising that the key to building an authentic relationship with Sebastien and alleviating meltdowns LIES WITH US is a critical first step. It requires us to be emotionally and mentally disciplined in attuning ourselves to their singular way of being and embracing ALIS — their way of expressing their inner lives.

EpiEco is not about normalising profoundly autistic individuals. It is about building normal relationships of care, joy and respect.

Slide above: EpiEco is not about normalising profoundly autistic individuals. It is about building normal relationships of care, joy and respect.

We didn't arrive at EpiEco — treating the profoundly autistic as the Epicenter of the Ecosystem — our self-formulated approach — overnight. EpiEco was the culmination of navigating through five years of Sebastien's relentless meltdowns in Singapore and the heartbreaking decision to transplant him from Singapore to Bali.

My heartbreaking decision to transplant my profoundly autistic son from Singapore to Bali — nature and independence

Though it took nine years in Bali, we finally heard Sebastien's voice. Although he may not express himself with words, like his speaking autistic counterparts, Sebastien is no less proud of himself. He sees himself as different from, not lesser than, the rest of us. EpiEco is our respectful and empathetic approach of embracing the uniqueness of profoundly autistic individuals and supporting them with sensitivity in a world that is not built for them.

This is A Mother's Wish's mission to challenge the mainstream world to make it an INCLUSIVE place for ALL.