I read this article early this morning on The Debate Over Sensory Processing Disorder (click to access). It struck a resonant chord, the reverberations still ringing inside my mind. Sensory processing disorder is an extremely distressing part of my own life. And I come from the generation where there was no such thing, and where nobody knew there was a higher-functioning side of autism anyway. I was fortunate to have been able to manage to feign a good measure of ‘normality’ – but middle age does take its toll on everyone. Even the brave.
So, everyone knows I have just moved into a new home. A neurotypical acquaintance recently walked into the front room of my new home, and immediately shivered and remarked, “This room is extremely cold!”. This was on a warmer, sunny day. I have now converted this space into my bedroom (because Lucy cannot managed the steep stairs to the master bedroom on her own). Yes, unfortunately, it happens to be the coldest room in the entire house, with the least natural light. I did this for Lucy, and I am not going to regret. But the senses do scream when it is wet and cold at the same time. And that is what happened during the two weeks of incessant rain and cold. I don’t yet have a good enough description for this particular sensory effect, other than “screaming senses, body shutting down, and overwhelming despair and depression from not being able to ‘deal with it'”…
OK, my own silly fault for voicing this on my Facebook status, even though I restricted viewership to only people who I considered closer friends. Nevertheless, friends aren’t always empathic people. The mockery that does most damage, as anyone can tell you, regardless of neurological make up, usually comes from people you consider ‘friends.’ And their excuse? “Oh, I didn’t mean it that way. You’re too sensitive.” I chuckle at the last one, because it is precisely that I am “too sensitive” that I suffer so much from sensory processing disorder! How INsensitive and UNempathic does the neurotypical person need to be for it to be a well-documented impairment then? (Question for the neurologists who perpetuate the damaging assertion that autistics lack empathy.) But I deviate.
Back to the point. That Facebook post elicited various (too predictable) responses. Apart from sympathy from fellow autistics and sufferers of hypersensitivity, here is what I got from the neurotypical, ‘normal’ crowd:
1)The all too familiar “Spoilt-Princess-stop-grumbling/complaining/whining-and-suck-it-up-you-are-lucky-you-are-not-in-a-more-dire-place-where-you-will-suffer-even-more” (as if I do not already know that? and does it really alleviate the suffering any bit?) Or, the by now worn and tired, “Wow, so you must be Super-human!” slap in the face.
2) Then there was the “Cold? You call that cold? How cold can Australia be? You should be in Canada / New Zealand!” Laugh, laugh, laugh. (OK, so do you deserve a prize for living in Canada / New Zealand? How about Antarctica then? How helpful is that kind of mockery / bragging, while you are sitting snug and warm in your well heated home, and well able to afford the cost of heating?)
3) A slew of clever suggestions about what to do, all of which required spending money which I do not have, and were too obviously tossed out without any sensitive thought to the reality of my situation. Grandiose postulations = nothing but cheap talk.
ONE person, just ONE person did something truly kind, truly empathic. And I am forever grateful. She did not tell me to suck it up. She did not mock and tell me about how much colder it is in Canada or New Zealand. She did not spew a verbal diarrhea of ‘helpful’ suggestions. Nope. She just came over with a heated bedspread (for Lucy and me), a warm sleeping bag (so I could wrap up while writing my conference paper), and a convection oven (so I could cook hot food).
Thank you, my friend. I was speechless with gratitude. Overwhelmed, really. And your gifts kept Lucy and me warm and toasty, helped me overcome my depression enough to concentrate and finish that conference paper, and warmed my heart and soul. (I am not going to think about the electricity bill, I am just savouring the warmth and goodness first.)
Should I have voiced my situation? Sometimes, I do berate myself for speaking out, because the reactions I get from people is often predictable, unchanging and unempathic (and most disappointingly those I still consider my friends). BUT… this time around… it was worth sharing about my state of near breakdown. ONE person listened, opened mind and heart to the message, and acted. That made it all worthwhile. Not just only for that one humbling experience of receiving unadulterated goodness from one person. What this experience brought me was the discovery that I have gained a real friend, and also an open heart and mind to learn about the reality of autism, hypersensitivity and sensory processing disorder.
Keep going, Bunny! One person is one person, and one person is worth the effort!
P.S. Yes, I do think about the less fortunate. Lucy’s homeless friends. Who have no place to call home, and some have no warm, faithful doggy to cuddle up to. And yes, I try to help too, in whatever small insignificant way I can, because that is what empathy is all about. And yes, I am very grateful to be where I am. I vocalise because I want people to know about autism and the issues we face, I am doing my small bit for advocacy and education, and because many of us are unable to vocalise, so those of us who can, ought to do so. NOT because I am complaining and grumbling, and not because I am asking for sympathy and pats on the back.