Autism advocacy #1 — It starts with enabling

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When it comes to helping those in need, I believe it boils down to these four words: Enabling. Empowering. Empathising. Embracing.

How did I come to this conclusion?

Well, two days ago I joined a nationwide focus group forum to contribute ideas for the new Enabling Master Plan (EMP) 2030.

It was the last in a series of forums to collate useful feedback from persons with disabilities (PWD) and their caregivers; to discover how best to help them from now to 2030 and beyond.

Since 2007, when disability agency SG Enable developed the first EMP here to help chart the direction help and services for PWD should take, the EMP has gone through at least two rounds of review.

This forum would provide the material for the third round.

As it was a forum to solicit maximum feedback, the organisers had to conduct it over a few sessions, each with close to 100 participants (mainly caregivers). This allowed as many voices as possible to have their say.

In keeping with pandemic protocols, every session was done online. Each was helmed by breakout room facilitators and scribes, and recorded to ensure all comments were captured and considered.

What transpired

Source: Author’s web camera

In my breakout session, which lasted close to an hour, there were four parents (including me) who shared candidly our responses to the above questions with the following pain points:

1. Lack of clarity for what caregivers should do first when a PWD diagnosis like autism or ADHD is revealed
2. Exorbitant costs of tests, treatments and therapies
3. Challenges to figure out which really works, given no two PWD’s needs are exactly alike.
4. Education and Employment concerns for PWD to learn skills in order to make a living and survive independently
5. Society’s lack of awareness, empathy, enabling, and understanding of PWD; this leads to constant stress and much anxiety for them and caregivers, when interacting with the world-at-large
6. Shortage of public spaces like playgrounds and malls that are designed to be PWD-friendly
7. Caregiver burnout
8. Unsympathetic bosses and colleagues who are indifferent, sometimes even downright hostile, to caregivers who need to take urgent time off from work to help their kids
9. How PWD can play catch-up when the rest of society continues to move ahead in skills and abilities
10. Fear of what would happen to PWD when their caregivers are gone

The truth of the matter is this: even tackling just one of the above at a time is enough to unravel the mental and emotional well-being of the toughest PWD or caregiver!

What struck me

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I started my blog in April 2019 to talk about my raw and unfinished journey as a stay home dad to my son with autism.

Through my writings here, I had hoped to record my own experiences as a caregiver, and advocate for inclusion. For people like him, caregivers like me, and for the PWD community as a whole.

It also serves as a form of self-therapy, especially on days when I feel like throwing in the towel!

Along the way, I’ve even poured over the details of the EMP’s corollary — the inaugural Autism Enabling Master Plan (AEMP), launched in January 2021 — through a series of 7 posts that unpacked the AEMP’s six high priority areas.

Back then I thought the plan rendered a lot of hope and assurance that comprehensive help will be available to PWD and caregivers. Yet somehow as I listen to the other parents share in the forum two days ago, I couldn’t help but feel more hopeless than hopeful!

A sentiment that’s also evident, unfortunately, in most of my blog posts on living daily with autism.

The day-to-day realities of a caregiver

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You see, such forums and master plans may appear to offer hope for PWD and caregivers.

But had you been at that session and heard the stories and challenges each of us shared, you’d realize that one thing was overwhelmingly clear: enabling and help services for PWD and caregivers are still very much in short supply.

One parent shared how insensitive frontline service providers could be. She recounted how a specialist in a local hospital for children once asked her an insensitive question. She asked the parent why her special needs child was “entitled” to receive subsidised treatment and therapy.

Til today, this parent still remembers the exact words used, who that specialist was and how she and her child felt when they heard that callous question!

Another parent shared how members of the public mocked and derided her and her kid with Down’s Syndrome (DS) during the latter’s public meltdowns. Now if someone with a “visible” disability like DS can be so disparaged, what more someone like my son with autism, which is “invisible”?!

Another parent talked about how confusing it can be to figure out what intervention methods and treatments will best suit his son. He was referred to first one therapist, and then another, and then another, making the whole ordeal most frustrating.

And then there were the endless rounds of check-ups, follow-ups, hospital visits, lengthy waiting times (often 3-5 times longer than the actual consultation itself), weekly sessions (sometimes more than once a week),…the list goes on.

To say it’s all overwhelming is truly an understatement!

The road ahead

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At this point I have to pause and talk about how the themes of an audiobook I just finished listening to this week, poignantly dovetailed with the overwhelming feelings the forum aroused in me.

In his bestselling novel “The Road”, which won the 2007 Pulitzer Prize for Fiction, acclaimed author Cormac McCarthy weaved a sad tale about a post-apocalyptic world where most living beings had died from an unnamed calamity.

(Warning: spoiler ahead! You may wish to skip the next two paragraphs)

The protagonists in this dismal dystopia was a father and his young son. From the very first chapter, we find them navigating the now brutal landscape to find food, shelter and what the son refers to as the “good guys”, as opposed to marauding cannibals!

The tale ends tragically when the father succumbs to a leg injury after an unfortunate ambush, leaving the poor son to mourn his death and the frightening prospect of surviving on his own in a dangerous world. Thankfully the boy was discovered by a family of “good guys”, so at least the book ends on a hopeful note.

What moved me about this book was the intense bond between father and son, no doubt brought on by the unfathomable situation they were in. The author masterfully spins a story with vivid descriptions of their circumstances, yet never lets the reader forget how far and deep a father’s love can be when the stakes are so perilously high.

At no point do we doubt the lengths the father would go to keep his boy safe; the lengths any devoted parent would go!

Enabling. Empowering. Empathising. Embracing.

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That for me calls to mind why parents in the forum are doing everything we know to do, with whatever we have, to advocate for the well-being of our kids with disabilities.

Yes, master plans and road maps we will always need, to help coordinate our still-disjointed efforts as caregivers to PWD here in Singapore. But underlying all of that is the strength of our love as parents, the one thing we can rely on to enable and empower us to go the distance for our kids no matter what.

So when asked in the forum to complete the sentence “In 2030, I hope that Singapore will…” my answer is very simple:

“In 2030, I hope that Singapore will, as a society, be fully enabling, empowering, empathising, and embracing of persons with disabilities and also of their caregivers!”

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