EpiEco and Why I Wish We Would Understand Profoundly Autistic Individuals and Change Our Approach

Reuniting with Sebastien, my 29-year-old son with profound autism

In a fortnight, I will be embarking on a logistically and emotionally complex trip — conducting autism workshops in Singapore for caregivers, presenting at the Asia-Pacific Autism Conference in Perth to a worldwide audience, and then taking Sebastien, my 29-year-old profoundly autistic son, on a 3-week trip. Everything came to a head yesterday when I plunged into full panic mode — working on five different projects/activities across multiple open windows, all while practicing the presentation, putting the finishing touches, and promoting the e-book on profound autism I had rushed to complete in time for the conference.

Over the past week, the tepid response of families, friends, and government authorities to the e-book has weighed heavily on me. It is as though no one cares enough to do anything about changing the status quo — profoundly autistic individuals (particularly in adulthood) are just too challenging, their meltdowns too overwhelming, for us to make a difference.

 

Today, I revived my flagging spirit by turning to Sebastien — my one true North. He reminds me of what I am fighting for. I need to open the eyes of the world to recognize profoundly autistic individuals' authenticity, their astonishing sensibility that is both a gift and a curse, and the high standard of quality care they require because they diverge so significantly from the norm.  

And in doing so, I also did some soul-searching. The truth is, whenever our three-week holiday comes around, I experience a mix of excitement and dread — delighted to see him but also anxious about how the holiday will turn out, which has little to do with the usual challenges of navigating through a world ill-accustomed to neurodivergent behavior.

This is when I am compelled to acknowledge my lack of courage — the part of me that shrivels at the emotional intensity and complexity of these 18-day reunions interspersed with six months apart. So often, I hide behind the mask of smiles and composure — those first emotionally tenuous moments when we reunite and then the gutwrenching moments when we say goodbye after such an amazing time together. The better the holiday, the harder it is to let go.

We would prefer Sebastien to just act “cool” about the whole thing because we are intimidated by his emotional intensity. But profoundly autistic individuals, like Sebastien, are true to their emotions. They wear their hearts on their sleeves. They bear and display the emotional complexity, instead of pretending them away. It is our pretense, our wearing of masks, that drives them crazy.

The reality is that so many of us — parents, professionals, and educators, as well as the members of the public — do not understand profoundly autistic individuals. Instead of trying to understand their difference, we just want them to be "easy to control".

But we are not worthy leaders and guides of autistic individuals when we demand that they deny their emotions, and we lie to ourselves about our own feelings. We are just imposter leaders; they can see through us and call our bluff.

Now this is what EpiEco (free extract, e-book) — treating the profoundly autistic individual at the center of the Ecosystem (of creativers) — is all about. The e-book, EpiEco: A Breakthrough Approach on Profound Autism, is about training us to rise to the challenge of being worthy caregivers who can confront our emotions authentically and help them face theirs.

With EpiEco, I am doing better by Sebastien. Meltdowns are not inevitable. But the change needs to begin with us.

EpiEco: A Breakthrough Approach on Profound Autism (e-book)