When you have children with autism, you suddenly become more attuned to what society can or cannot do to help embrace and care for your kid when you go.
Will they find a life partner and become parents themselves one day? Will they gain decent, secure employment in an environment that is accepting of their uniqueness? Will they be able to live unassisted? Will they make life-long friends? Will their neuro-typical siblings support them when they need help? Will people they encounter in their lives more likely be kind or cruel to them?
It’s a hard truth: I worry regularly that when I die, my son C will have a tough time making it on his own. His continued lack of urgency to master basic daily living skills like, among many things, tooth brushing and all the other stuff that needs doing in the toilet and bathroom, makes me anxious about his life when he’s older.
And given that he turns ten and a half next month, that distant future when he’s grown up and older, ain’t that far away!
So I’m glad that in my country there are efforts over the years to address caregiver and parental concerns that may not be verbalized enough. Simply because saying them out loud somehow makes the future seem bleaker than it might actually be!
And who wants to be known as the bearer of bad tidings right?
An Autism Master Plan covering 6 “High Priority” Areas
So I appreciate that our nation’s reputable skills for advance planning in nearly every aspect of its citizens’ lives were put to good use in helping birth the inaugural Autism Enabling Masterplan. It was launched in January this year.
As this proposed plan stated, the goal was to “provide a directional roadmap for key autism service organisations in Singapore in their work of empowering and enabling persons on the autism spectrum to realise their full potential and live a good quality life.”
The idea for such a master plan really came from the fact that our country already had a third version of a master plan that was launched in 2016, called (of course) the 3rd Enabling Master Plan. The first was created in 2007, and updated every five years.
These plans put together ideas, strategies, programs and services to help those in society with disabilities.
However, it was felt within the autism community that these plans were too generic. With ever-growing numbers diagnosed with autism in recent times, (estimates in 2016 pegged it at one in every 150 children here), it was felt this developmental disability needed a plan to call its own.
Before I go on, I just wanna pause and say: ya gotta love the name, right? I mean, what could sound more invigorating, more hopeful than “Enabling” and “Masterplan”? There’s an almost “May the Fourth / Star Wars / Master Yoda” kind of vibe to it don’t you think? (Sorry for the sci-fi reference, but it’s still May now and I have a massive Star Wars fan in my household!)
Well for this parent at least, I finally felt that maybe now we can have a proper roadmap to help chart and pinpoint the different stops in C’s life journey that he can “fill up his tank” if and when he runs empty. (Beating the transportation metaphors to death here cos C loves all things transport!). And these different stops have been encapsulated into six high priority areas in this Masterplan.
Though clearly not an exhaustive list (as the word ‘priority’ suggests), these areas will nonetheless provide a good starting point for caregivers and parents to consider what lies ahead for their kids on the autism spectrum.
And as a parent still struggling daily to understand my son, having some kind of guidance on high priority areas I should focus on for him in the years ahead sounds like something I should carefully pay heed to right?
So to do justice to the hard work of the team that put this plan together, I resolve over the next six Saturdays to dive into the Masterplan and each of the six areas identified. To learn, record, reflect and post my thoughts on what they mean for me, C, and our family.
And perhaps in sharing them, offer yet another means for others like me to process through and hopefully feel increasingly empowered and hopeful for our children and their future!
So tune in this time next week when I dissect the plan’s first high priority area – Quality Assurance for Autism Services.