This is it, the last autism priority area unwrapped!
Finally, after two months!
Since the start of May, I’ve been writing every Saturday about my country’s first-ever Autism Enabling Masterplan (AEM) — launched in January — and its six High Priority Areas (HPA).
Took a break last week to write about Father’s Day but now I’m back on track with the last HPA, HPA #6 — Planning for Life After Death.
[If you’ve yet to read my earlier posts on this topic, please find my brief introduction of the AEM here, as well as my reflections on its HPAs #1, #2, #3, #4, and #5]
For this final HPA, the AEM report brings up arguably the Number 1 question in the mind of every parent of a child with special needs:
“What happens to my child when I’m no longer around?”
At this point, I have to pause and take a deep breath.
Just because.
Right now, there’s really no other tougher question in this world for me.
It’s one thing to talk about life after death when it’s just about yourself; quite another when it’s about someone else.
Someone you love very much.
Someone you’ve been caring for all his life.
Who’s yet to know a single day without you in it. Tending to all his needs, and training him to attend to them on his own someday.
Wanting my C to thrive after his mom and I are long gone throws up so many concerns. I can’t even begin to unpack them properly without succumbing to the sheer enormity of the task!
An Inconvenient Truth
As the report highlights, many adults in the ASD (Autism Spectrum Disorder) community lack the means to secure their future well. In fact, many studies done over the years point to the stark reality that a large percentage of them face long-term unemployment, or are engaged in only voluntary employment.
And that’s only if they are less in need of support because of milder ASD conditions.
Which means those who have more severe conditions…(deep breath here again)
When I actually reflect on daily services people need — banking, medical, postal, food, household items, just to name a few — I’ve come to realize that few are easily accessible to those with ASD.
As the report mentioned, this can be due to a myriad of factors. Such as a lack of understanding from service staff and sensory issues. For example: “Dad, the supermarket/mall/beach/park/etc is too bright/noisy/crowded/pungent.” Pick any one of these, or pick all!
Not forgetting formats, forms, and lingo one must know to navigate officialdom.
It’s already a minefield for most of us able-bodied and neuro-typical to navigate!
What more people like my son?!
Recommendations by the Autism Enabling Masterplan
With regards to this final HPA, the AEM had three recommendations to offer to improve current situations. (You can find the full rendering of them here)
The first is to come up with what it calls a “playbook” or comprehensive step-by-step guide, to support planning for the life of the ASD person, after his or her caregiver’s demise. This would cover many areas, not the least of which are health, housing, finances, employment, transportation, legal and social.
All things considered, it’s kind of hard to imagine why the AEM authors would call this a “playbook’. There’s nothing “playful” or “fun” about it! Instead, I see it more like an encyclopaedia or appliance manual.
The second proposal is to establish a strong sibling support network, as siblings are typically the “next-in-line” after the parents and adult caregivers to take care of the ASD person.
As mentioned in my previous post on HPA#5, it can be a challenge for siblings to take on the role of caregivers. Either they’re the only sibling (since most ASD persons come from small families), or they themselves have special needs. So having a network of “fellow siblings” could go some way to ameliorate the harsh daily realities of caregiving an ASD sibling, while still allowing that sibling to forge his or her own path and fortunes in the world.
The third and final recommendation in the report is to increase community access for the ASD person.
This means there should be two-way communication and support networks between those with ASD and the community (work, residential, and other social settings) they live or regularly interact in.
Three’s the “charm”!
Of the three recommendations, I’ll have to say that third one’s the real challenge!
Building a community isn’t easy in my country, especially now when fault lines are unfortunately starting to surface in areas like racism, and the persistent reality of stressful living that’s being brought up again and again.
On the ground, few actually know their neighborhood (let alone their neighbors) very well. A report four years ago presented survey results that showed most here prefer privacy over neighborliness.
I guess I’m guilty of that too. I remember several times when strangers approached me to ask where such and such a block of apartments was, and I had to think really hard to figure out the answer.
Even when I’ve lived here for over 20 years now!
And I can barely remember the names of my next-door neighbor’s three adult sons whom I’ve watched grow up during the same time.
Who then in my community can I hope to count on to help C when I’m gone, when I’m not even a friendly and reliable neighbor myself?!
Conclusion? This autism journey needs a better map!
In closing, there’s no doubt the AEM has been an important document for clueless caregivers like me to recognize the magnitude of the task to raise C.
Now that I have this toolkit, the next steps are clearer. Or at least the need for them is.
What remains is to work things through with C’s mom and brother. Together, we’ll have to marshall the best resources in the coming years to help address the unique needs C will have in the different phases of his life.
And it’s a journey that’s already begun; raw, unfinished, and in dire need of a clear map!
Good thing, cos it’s “familiar” territory for yours truly — living in the raw unknowns and the unfinished in-betweens! Two out of three boxes checked.
All I need now is that clear map for my third box to be checked! For that, this Autism Enabling Masterplan should do the trick.
So…*Deep breath*…here goes!
