EpiEco: A New Approach for Autism Care

*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 to 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.

Sebastien — Our Inspiration

This video of Sebastien, my autistic son, now 28 years old, moved people more than I had anticipated, back when I casually put it up on LinkedIn, many months ago. The idyllic backdrop of the tumbling waterfall, the lulling rhythm of the swing, and most of all, the tranquillity of Sebastien capture the progress we have been striving to make for him over the past eight years.

But there is so much more to what the video conveyed. Sebastien didn't just get better because of nature or the magic of Bali. It certainly had not happened overnight; rather, his progress has been steady but gradual.

This is because Sebastien has a non-verbal profile of autism (unattuned to language and abstract learning), which means that he does not learn and relate to others like most people, including those with milder forms of autism. Despite these constraints, Sebastien has shown himself to be an avid learner with his hands, picking up skills such as cooking and carpentry with greater ease than most as well as exhibiting natural abilities in painting and skating. Therefore, he is not so much a low-functioning autistic individual (as he could be labeled) but an individual with atypical intelligences.

Moreover, as he grew into his adolescence and became increasingly cognizant of his difference from his peers, our biggest challenge has been to help Sebastien navigate through his difficulties with having atypical communication preferences and heightened senses that are easily overwhelmed by our busy and noisy cities.

EpiEco

That's why our approach — EpiEco (Autistic Individual as the EPIcenter of the ECOsystem) — is focused on how we improve the ecosystem, i.e. physical environment AND the people (family, friends, helping professionals, and the public at large), by paying attention to the wellbeing of the autistic person at the epicenter of our care.

It is an approach that does not EXPECT the autistic person to fit into the ecosystem. Rather, it challenges us to better understand the autistic person so that we can form authentic relationships with them, based on mutual respect, care, and love. We need to work together with the autistic person to help realise their unique potential, whatever it may be.

With EpiEco, we don't believe that this should be done by imposing our norms and behaviors on autistic individuals. Instead, EpiEco acknowledges the differences in how autistic individuals perceive the world around them and their responses. It challenges us to develop a dynamic ecosystem that is based on forming authentic relationships — one that is always responsive to their distinctive needs and ways of being even as we share our world and ways of being with them. 

EpiEco challenges us to develop a dynamic ecosystem that is based on forming authentic relationships with autistic individuals — one that is always responsive to their distinctive needs and ways of being even as we share our world and ways of being with them. 

And this is, by no means, an easy approach to adopt or an easy sell, whether to parents or professionals. Getting autistic individuals to follow the mainstream norms is often considered the most direct path. Sadly, this is why many autistic individuals are living in a hostile ecosystem, characterized by one-sided control, suppression, and frustration. In an ecosystem, where autistic individuals constitute the epicenter, the journey forward, though it will require patience, will be paved with mutual love, support, and acceptance.

Interpreting the atypical responses of autistic individuals doesn't come naturally for most of us. Very often, what you see is not what you get. But the amazing thing is when you have suspended all agendas by simply focusing on the well-being of the autistic person, what they end up becoming and showing you is something you could never have imagined.

What is of utmost importance is not WHAT we can GET them to do, but that they TRUST us and CHOOSE to engage in their life with JOY. 

Sebastien skating on village road, escorted from the front and at the back with his carers!

A big part of Sebastien's daily life is having that moment of peace — communing with flowing water or interacting with the river in other ways (picking up leaves and throwing stones) to regulate his emotions.

To learn more about EpiEco:

1. Check out our video series featuring digital illustrations (each video is 5–10 minutes, though the narrative is in English; subtitles in multiple languages can be used through YouTube's autotranslate feature ["CC" closed captioning]):

   Video 1: “What is Autism Really?”

   Video 2: “What is Autism-Friendly Interaction Really?” 

   Video 3: “What is an Autism Meltdown Really?”

   Video 4: “What is an Autism Meltdown (Adolescence) Really?”   

   Video 5: “What is Autism Caregiving Really?” 

   
   

2. Where Does My Autistic Son Belong? : This book chronicles my struggle with my autistic son's meltdowns for five years during his adolescence and our journey towards discovering a relational approach based on an authentic understanding of autism from an empathetic perspective — the foundation of EpiEco.

   
   

3. Consult with us for a customized consultation at an affordable contribution to A Mother's Wish.