doorknob

Help and support hanging on the door knob. No need for social interchange if unable to cope with it. This is a blessedness indeed.

I remember a few incidents when I was pursuing my M.Phil in music composition in Hong Kong. I was very unwell – an autoimmune response to what was most probably sensory and emotional overload and meltdown – high fever, excruciating mouth ulcers, crippling arthritis. A few friends came to the rescue.

One friend offered to buy me food. The first time, I didn’t have the presence of mind to request that she hang the nosh on the doorknob, so it was very painful to have to open the door, receive the takeaway, make small talk and thank my friend for her help. The second time around, I sent her a text to please hang the food at the doorknob. She did. Well, actually, she sent her husband to do the task. I sent a thank you text. Perfect! (Though the food her husband bought was really a bit too overpowering for my olfactory quirks and I ended up not eating it.)

Another friend who lived very far away made the effort to travel the hour and a half bus, train and ferry ride to me (and another hour and a half back), bringing me a walking stick for my arthritis and some much needed food. Because she had made what to me was a most arduous journey, I felt terrible for not wanting to entertain her. So I did. She stayed and chatted for over an hour, and it was a monumental physical and mental endeavour on my part to reciprocate socially in my condition. I am forever grateful, because I know she not only meant well but was willing to go the distance for me, without asking for anything more than my friendship. We are no longer in constant contact, but I still count her as one of my more valued friends who has contributed immensely towards my little odyssey.

Of course, I will never forget how one very special friend, a fellow Aspie, decided to just come over to my place, and clean my apartment for me. He meticulously mopped the floor with cloth and bucket, on his hands and knees. This friend did not engage me in conversation, since, thankfully, he understood about the need for silence at an overloaded time such as this, so he just told me to shut up and go to bed. This friend has continued to help me and support me in his signature quiet no-nonsense way through the years. In fact, I am indebted to him in a very big way.

Here in Sydney, I have found wonderful friends too, who have been generous towards me in very practical and essential aspects.

One friend, Rick, who calls himself NT72 (NT = neurotypical though he is definitely not typical in any way), has been a bulwark of mental and functional support. The little gifts of food, donations towards my work and other functioning essentials, the intellectual interactions, our weekly ranting sessions (well, I rant and he listen intelligently), the kitchen cleaning and various other bits of ‘hard labouring’ that he has helped me with are most consequential contributions towards my survival. He would definitely be happy to hang food at my doorknob without need for interaction should I request it.

Then there is Lucy’s Godma, whose friendship is so precious to me, I cannot find adequate words to describe this existential entity in itself. After eight months in residential hell and autistic executive dysfunction / breakdown, she single-handedly saved me and Lucy by providing us the means to move back into our old neighbourhood, where I can once again be near my workplace, and away from all kinds of menacing assaults to our senses and mental safety. All the money and effort that I wasted on running back and forth to and from one specialist after another testing and probing the mysterious physical manifestations of myriad painful perplexities only served to drive me deeper and deeper into the abyss of my disability. As soon as we settled into our new home, voila! the world stopped spinning madly and Lucy and I were happy again! No more over the top physical riddles, no more medical puzzles, and best of all, I could dive back into the delicious and urgent business of focusing on my work once again. My friend lives a distance away, we are unable to meet in person, in fact, we have not met up in months now. Brief and infrequent telephone conversations are all that we have exchanged thus far. The support I have received from her has been and continues to be crucial, yet she demands nothing from me in return, though I wish there was something I could do for her in return. This is Grace.

Another friend, one on the spectrum I am quite certain, has consistently given me valuable intellectual and strategic advice through the years I’ve known him. He has sent me a practical gift, a Canon G11 camera, all the way from the USA, where he is based. It is a gfit which I have put to good use for my work. Now, he is also on standby in case I need his support just to survive day to day, during this last leg of my PhD. This, too is Grace.

Ah, how I love my ‘doorknob’ friends. I am indebted to them. Even though I feel I have nothing valuable to give to them. Grace is beautiful yet so humbling, is it not?

Don’t get me wrong. I am not one who relishes in freebies or entitlement. I do still appreciate friends who offer me help in exchange for something they want from me – for example social interaction and attention – but it is very clear in my systemising mind that these are more models of trade than grace. There is nothing wrong in fair trading, it is a healthy system, if done right. But if these exchanges become excruciating to either party, then they evolve into encumberances. I am a stickler for fairness. I often bend over backwards to try to be reasonable and fair towards people with whom I have dealings. (Which is an irony in itself, this bending over backwards, because it isn’t really ‘fair,’ then, on me, is it?)

Social demands are something I find the most costly and painful to comply with, though I do so willingly in the name of give-and-take. However, when these social obligations become more pushy and clamorous than I am comfortable with, I feel myself sliding downwards along the slippery slope to ultimate destruction. By this I mean the kinds of social requests that do not take a polite and gentle, “No, thank you!” as sufficient reason to back off, impositions that ignore the very core of my different embodiment, that push me beyond my operational comfort into overdrive, that deny me of my right to cope. And I find, ironically, the people who do this are mostly what I call The Extreme Neurotypical / the extreme social-brained / the extreme socially-driven (whether out of benign ignorance or sheer manipulation to achieve their own ends). Just as autism is a spectrum, the non-autistic realm also consists of a spectrum of humans dotted along the way. The Extreme ones are those who are so driven by their own need and desire for social interaction that they bulldoze their way through anyone or anything that tries to resist the force of their agendas.

Neurotypical commentary on autism social reciprocity or lack thereof tends towards the label of “selfishness” / “self-centredness” / “self-absorbed.’ It is something that I have contemplated at great length, breadth and depth for many years, and with much agony too.

My response to the above assertion that autistics are selfish, self-centred, self-absorbed and/or socially unresponsive is this:

I go to great lengths to be fair to my friends, even those who demand social reciprocities from me in exchange for measured kindnesses. It hurts me – literally physically – to comply with overwhelming social requests. For many autistic persons, just one hour in a party of eight or ten babbling human bodies congregated in a small room means pounding headache, nausea, dizziness, acquired via the sheer monumental effort of sensory integration in the face of disintegration, trying to sieve out the overpowering noises, lights, tastes, smells, textures to conduct an intelligible conversation or repartee on subjects utterly meaningless. At the end of this one hour, the conundrum is either to bite down harder and push forward through the tunnel of torment, disregarding the urge to just lay down in a heap or the wish to disappear and die, or to make and exit, braving the onslaught of babbling persuasion and cajolement to please stay, why are you leaving, can’t you just take two panadol for the headache etc. Dramatic? Maybe to the socially-driven mind who enjoys the boisterous shenanigans, but this is stark reality for too many autists who venture forth into the an alien social world.

As for me, yes, I will do it for you, if I consider you my friend. I do it because you have been very kind to me. The question is, would you willingly suffer an equal amount of devastating, debilitating torment and torture for me? Or is your kindness less painful to you to dispense than my reciprocity is for me?

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