[Below’s my 200th blog post! Yeah me!! If you’re new to my writings, feel free to learn more about me here]
Last week, I introduced the Autism Enabling Masterplan (AEM), meant for the local Autism Spectrum Disorder (ASD) community.
It was developed and launched in January this year by multiple parties supporting the community. The AEM creates a clear roadmap for caregivers and autistic members of the population to navigate their lives better.
In my intro, I shared some broad strokes about the plan. I also mentioned I would unpack each of the six High Priority Areas (HPA) it expounded upon (over the course of these next six Saturdays).
It’s how I hope to better understand its intent and reflect on the points raised. And to see if there’s anything I can contribute to. Maybe via feedback or helping the plan bear fruit in ways big or small. To do my bit for the ASD community that my family identifies with.
Thanks to my son C, who was diagnosed with moderate ASD back in December 2017.
Today, I”ll start with the first HPA mentioned in the AEM: Quality Assurance for Autism Services.
(For those interested, the full rendering for this first HPA can be found here.)
What’s this about?
In the AEM, HPA #1 (Quality Assurance for Autism Services) begins with a warning.
With improved screening, the number of persons diagnosed with ASD is growing globally and locally every year. So more services and programmes would have to be made available for this ever-expanding community and its caregivers.
The problem is that despite great strides in the last decade or so in improving the range of services and options, much remains to be done. To “ensure optimum standards“, the “best practices must be evident in all autism services and programs, be it in early intervention, education, workplace training, healthcare, Day Activity Centres, leisure and recreation programs, residential living, etc.”
This, according to the AEM.
Getting through each day
Living hand to mouth, day after day, it’s hard for me to have space and time to ponder each stage of development C will undergo as he grows up. On many days, I’m just getting through life parenting him one moment at a time as a stay home dad!
Yep, it can be pretty overwhelming that’s for sure. (Check out some of my previous posts on life with him here if you don’t believe me.)
However, the content written up on HPA #1 has reminded me that there are so many touchpoints in the journey of life for my son and others like him. From birth to preschool to primary/secondary/tertiary/vocational education. Not to mention taking care of his mental, physical, emotional, and social developments.
And every single one of these life stages and dimensions require intervention to various degrees.
Those ‘pinball machine’ days!
I remember when he started spinning round objects at the age of two. No one told me that was a potential sign he might be on the spectrum, and I didn’t think to ask.
To me, that was just C and his “thing”.
But later when he showed delayed motor development as well as socialization skills, we started to sit up and take notice. So did his preschool teachers, who promptly advised us to bring him for testing.
What followed since felt like one of those pinball machines in a games arcade. My family, or more specifically my wife and I (and C), were the pinball being ricocheted all over the confusing and meandering insides of the machine! One hospital appointment after another, one therapy session after another, one school after another.
Paying through my nose!
Yes, I can safely say quality standards were anything but uniform across the myriad of professionals and support personnel we encountered. And the worst? Paying through the nose only to be told after each session that we the parents had to do the majority of the “heavy-lifting” at home.
To take him through the follow-up therapy steps daily!
Heck! Why not just send us a link to a Youtube video tutorial instead?
It almost felt like the therapist wanted this like some exit clause in a business contract. So she could sidestep any blame should the therapy sessions yield no improvements in our son over time. I can almost hear the therapist’s voice in my head go: “Have you energetic, plenty-of-time-on-your-hands daddy and mommy been keeping up with the daily regiments for C that I taught you? No? Well, no wonder he’s still the way he is after all this time!”
Fume.
A multi-layered confectionery!
So adopting best practices at every stage would certainly be a nice change. One I hope other parents “new” to ASD can experience.
Of course, I’m not naive. I know best practices in the real world are at best patchy. There is a constellation of objectives and purposes for any ASD service or program out there. Not forgetting they serve clients and caregivers who are also as numerous and diverse as the constellations up above!
This probably explains why the AEM recommends evidence-based standards. Such standards help establish best practices that, put together, form an accreditation process to screen all available ASD services and programs on offer. The AEM highlighted one example in the UK, where the National Autistic Society conducts an Autism Accreditation process on organizations like colleges, schools, prisons, and local authorities seeking to become ASD service providers.
The AEM recognizes that while“many autism services in Singapore may not currently meet the rigorous standards required to obtain accreditation, a set of clear quality standards would be a good reference point for all service providers to improve their programs for persons on the spectrum.”
Couldn’t agree more!
A noble goal, tough to achieve given the many tiers and layers that address different needs of different ASD people and caregivers. More than even a multi-tiered wedding cake!
But aren’t the “noble goals” ultimately the ones most worth pursuing?
I just hope that in the pursuit though, we don’t get too caught up in the nitty-gritty details and forget the person that needs help. That person could be the ASD child, his teacher, his parents or caregiver.
So to that end, I’ve decided to throw my hat in the ring and sign up to be trained from next month as a volunteer “care buddy” to help parents and caregivers “new” to ASD.
That way, I can do my part, learn best practices and help other caregivers like myself.
Because at the end of the day, this isn’t only about C, his ASD, and easy access to quality ASD programs and services.
This is ultimately about everybody working together hand in hand to build a truly inclusive society for ASD and non-ASD people alike!
(Check in next Saturday when I unpack HPA#2 – Planning for Life)
Thank you for expanding our understanding of and challenging our involvement with autistic individuals and the community.