Funny how time renders perspective. Even a different way of looking at things once held as definitive truth and “the way.” The “right” way. I now get it. I totally get why that older mom was so miffed and would mouth off against research versus where rubber meets the road. Like where her son was living and what he was needing at the time….You see, we kind of created this crisis we are in nationally. Research? Out the wa-zoo for causes, genes, intervention therapies for tne newly diagnosed. But end road? Crickets. Almost nada. I understand the need for research. I’m not damning it. But, it’s time to wake up and shift our perspectives to the crisis that’s here at the opposite end of the age spectrum. We’ve grown up, people.
***
I’m all about happy stories and happy endings. I believe our life with autism, overall, is a happy story. Even a success story, though one filled with a lot of sweat dripping from the brow. But hearing about how this family or this group found employment, saying things like there is hope for this ginormous group, the majority of whom are marching toward a cliff with no safety net of services, doesn’t get it. What onlookers to all the media coverage our community has received this month are missing is the big picture. Just how overwhelmingly many of us are in this same boat. And, that there’s many paddles needed to propel the vessel forward: Employment. Community. Shelter. Caregiving. Hurray for the mothers and fathers and organizations that have found employment solutions. No facetiousness here. So have we, in part. It’s the shelter part. Where are we going to live? Check, got that, fortunately. But 24/7 care if Mom wants to go back to work and earn some bucks for retirement and do something besides caregiving? Or, when she dies, who will take her place? Big picture, people. It’s more than about happy employment stories. It’s about the silver tsunami of caregiving.
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Stop. Comparing. We must, people. Yes, the Joneses have more money. Yes, that state has better services. Yes, that son or daughter got better intervention, is higher functioning, and on, ad nauseum. As a wealthy friend once told me square on, despite all that she could afford for her offspring, at the end of the day, they still had autism. I am reminded to be grateful for what I have and to remember how others struggle and that we each live in our parallel universes of pain. And joy. That simple. Is what is. No comparison of good, better, worse. Comparison divides us. We need the unites-us glue. Our unity is within our diversity. We are all living with autism.
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It’s not just this generation of known increased incidence. Autism has been with us at least since the Middle Ages. (That is the first suspected historical record.) It’s just gotten more prominent. Please leave home theories of sugar and poor diet and overgrown nose hairs as the cause for everyone’s autism. Whatever the cause, (and there are many,) it’s here. It’s been here. And there’s hundreds of thousands of other families and loved ones living with other forms of disAbilty, too. I regret autism dominates the conversation. Our incidence rate is the impetus. All disAbilities matter. Everyone is struggling. All of us need to be heard.
***
Lastly: Choice. It’s the kicker. The biggie. The one our Western mindset hears and then plugs its ears and runs screaming. For the last two Aprils, I’d thought I’d detected a shift in our community perspective. We were no longer labeling autism the beast who stole our child in the dark of night. Reading some of the blogs out there this month, I’m no longer sure about that shift. Still, through websites and Facebook groups such as “The Gifts of Autism,” there is an underground rising and swelling of recognition that there’s more than just a label to this “disorder.” Yes, the challenges of autism in our neurotypical world are very real. But maybe there is something more, and that the incidence has increased from whatever causative factors for reasons beyond our human physical body comprehension. We need shift in culture, in our consciousness. Who but a challenged individual with autism to help one shift: Be in the moment. Teach unconditional love. Be color blind. It is our world, our neurotypical ways that hurl prejudices and intensify the struggle. Heretical to many are these things to say. But choice. Choice. Here you are. Here we are. Fight, wrestle, hate, mangle. Or, well, your son or daughter (or you) has autism. Where can the beauty in the difficulty be found? How can we see things differently? I don’t know about you, but I don’t want to fight life. Autism is here. I want to choose to embrace it for what it teaches me, how it stretches me. It is, after all, my teacher. My teacher is of grace. She teaches me grace. And, her name is Grace. Can you find your grace? #choice
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