Hello, there! Do you know my name? What is my favourite food? Guess who this is behind me in bed? Who is her very favourite person in the world? Why, me, of course! I am Tiny, but I am mighty too! And that is my Granny hiding under the colourful blankie, because she doesn’t want to smile for the camera. And my favourite food is … CHIMKEN!!!!
Oh yes, Gran likes watching telly too. Do you know what shows she likes best? Guess which movie Granny has watched eleven times?
Do you know what Gran loves to drink? And her favourite ice cream?
Gran likes to listen to music. Do you know what is on our Spotify playlist every day?
Oh, you don’t know any of the answers?
Well, I’ll tell you something very sad. Gran is gone. Gran went to a place she called ‘home’ to be with Bizcuit Boy, my big brother. I miss her very much. But mummy says we’ll all see her again some day. So, I will be a good boy and wait.
But now you have so many questions to ask about Gran. This and that and this and that and that and this and that and this! You know what, you should have asked all your questions when Gran was still around. Why didn’t you ever come over and hang out with Gran and me? She had plenty of time to tell you everything you want to know. Why didn’t you ask her then?
Or maybe Gran didn’t tell you because she just didn’t want to?
This little gadget arrived yesterday afternoon, but I was too sick to unbox it till this morning. I’m once again wanting to record Lucy’s heartbeat, and hoping to get a clearer recording than the one I made a few years ago with the baby doppler. It’s proving to be a bit tricky, because it is picking up a lot of the ambient sound. A 3m Littmann digital stethoscope might be the most ideal, but I’m hoping this slightly cheaper alternative would do the work well enough for my purposes. I am creating a soundscape for my upcoming work, Scheherazade’s Sea: continuing odyssey, 2021.
I get really excited when the things I order arrive at my doorstep. I love online shopping, no need to dive into the nightmare of crowded malls and nowadays poor or completely absent social distancing, no bad smells to trigger nausea, no bright lights or lousy mall music, also no pushy salespeople too! And I am really enjoying this new option of contactless delivery – no need to interact with anyone directly, bypassing all possible sensory dissonance, I just thank the delivery person really nicely (and loudly because the door is a heavy one) and wait for them to leave before opening my door to pick up my parcel. Little things can bring a lot of Autistic Joy. Ah, yes, and a lot of gratitude helps greatly. All the life and soul that my oppressors tried to take from me, all the support and security that they have withheld since I struck out on my own to live my life according to my own heartbeat, have been showered upon me a hundredfold by my new friends and one loyal sister. Not forgetting Lucy Like-a-Charm, my Angel heaven-sent. All my dreams have come true in the most remarkable and unexpected ways. I am a very fortunate / blessed / lucky Autistic Bunny!
Now to keep going, even though I am physically run-down and exhausted: everything I am doing now is my way of paying it forward. Tally ho! Bunny and Lucy!
No other joy compares to gazing upon Lucy in Clement Space. Not only is Lucy Like-a-Charm the inspiration behind Clement Space, she actually embodies the Beingness of Clement Space, she ignites its intrinsic life force and permeates its grace-giving expanse.
After an intense week of work – I am getting worse and worse at multi-tasking as I grow older, and more and more monotropic in my functioning – I finally crashed big time. First came the swelling in all my joints, then the mouth and throat ulcers full blast (delightful features of my main autoimmune condition), then yesterday, the IBS pain completely struck me ‘down’, sent me into bed all afternoon and through the night. I couldn’t eat dinner even though I was hungry.
So, the IBS stab in the gut was due to my foodie-greedy predilection for glutinous rice dumplings called “bak chang” – it was a tiny miniature one, cooked nonya style, but it proved my undoing with a large size punch!
I am convinced that Lucy senses me more accurately than I sometimes sense myself. She stayed very close in bed all afternoon, followed me when I woke up to get a drink in the kitchen, and snuggled close through the night. She woke me at around 4am, and I was wondering why, I thought she needed to go outside for a pee, but I realised that my throat was parched. After I had a few sips of water, Lucy settled back down into bed and we both resumed our sleep till 6.30am, our usual time to greet the new day together.
I could never sleep well with another body beside me in the same bed. It made me anxious. But now I cannot sleep without Lucy in bed with me. I dare not consider what will happen when she leaves me, but I want to treasure every single moment until then.
Lucy is my Clement Space. And my Clement Space is Lucy. This is pure Autistic Joy for me – and peace. I am so lucky.
A troubled autoimmune condition combined with autistic hyper senses can be amazing and wonderful, and then horribly excruciating in turn, or even all at the same time in a kind of jumbled, flurried Wagnerian orchestration.
I put it down to my entire system – conscious, subconscious and unconscious – being highly strung and reactive to the tiniest little itty bits of life.
I ordered this beaded patch some time ago, it took ages to arrive and I’d nearly forgotten all about it, until it turned up in my mailbox. It is much smaller than I’d expected, but somehow, this made the thing more charming. Small details like this make me smile, and now I am excited at sewing it onto something… one of my many masks, perhaps?
And then there’s Mini-B. I love her bum. There’s a certain delightful, happiness in the way her tail swishes and her round bottom bounces as she runs around. Or when she lays down in the patio to watch the birds.
Rain brings a fascinating visual feast. I call these mum’s gems. Because these are her plants. Every drop has its own character, shape and distinct domain.
I’m still wanting to get a macro lens so that I can take better close-up photographs. Raindrops fascinate me.
I will miss these plants and the shiny globs of liquid gems that appear after the rain.
In a neuronormative world, everyone is an expert on autism. Disabled or non-disabled, everyone has some kind of expertise in autism. Except actual Autistic people, of course. What do we know about autism, right?
The problem is us, the autistic people. The problem is that we exist, and nobody knows what to do with this problem. So non-autistics invent solutions to the autism problem. With Autism Recovery centres offering programmes to help your child shed autism like it’s some skin disease, ABA drills to make the autism problem trained away with biscuits and raw carrots, and then there are the potions to drink and inject and stick up our anuses… endless expert solutions for this one monumental problem. Yet, we still exist.
We are told what terminology we should use for ourself. Shhhh, don’t say “autistic” say PERSON WITH AUTISM!!!
We are symbolised by puzzle pieces, and the skies are lit up blue in our ‘honour’ but nobody wishes to ask us if that is what we want.
We are spoken over at Autism Awareness events by all and sundry, from the corner grocery store aunty whose grand nephew’s uncle’s daughter’s niece “has autism”, to the autism-momma ‘author’ making the jolly circus rounds with book in hand full of ‘authentic autistic stories’ written by ‘actual autistic people’ – all unpaid labour – but none ever invited to speak alongside momma’s ‘autism expertise.’ Oh, and there’s that other expert too, that non-autistic man talking about autistic females.
What a wonderful world, innit? Or is it?
What is it about autism that makes us so amazingly, systematically, blatantly exploited and discriminated against beyond all other disabilities and diversities? More money to be made in this circus than the sum total of everything else? Yeah. Maybe. It’s also quite trendy, eh? Brings you to places you’d never otherwise have access to, and provides good income too.
Here’s the rub. These days, almost nobody in their right minds would dare gyrate onstage to speak at any respectable event about the lived experiences of wheelchair users while obviously not being one, right? And if you were hearing, would you have the gall to take over the podium about Deaf/deaf issues just because you’ve learned to sign and use captions? Who’d even invite you anyway? Aha, and wonders of wonders, you could write a book too!!! Wooooohoooooo!!!!
Oh, and on diversity… how about a straight person speaking authoritatively about LGBTQI++ lived experiences because you lay claim to having grown up with someone from the community or have parented one? Or pulled together a book full of unpaid contributors’ work by members of the LGBTQI community? Or actually written a book about your own outsider experiences as father, mother, cousin, daughter, son, aunty, uncle, great-grand-cousin, oh yes, don’t forget the char kuey teow seller too while you’re at it? How about a Chinese person talking about Indian identity because your best friend’s uncle’s nephew has an Indian spouse?
No? Ridiculous? Disrespectful? Preposterous? But I am not joking… or am I?
OK. Then WHY AUTISM???? Why is it ok to speak over autistic voices just because your grandnana’s papa’s boo-boo’s doo-doo has a “child-with-autism”, or even better yet, you are an expert because you have been a preschool principal with a few autistic students peppering your many decades of expert experience?
And then when autistic people actually become very very upset and protest in a straight forward direct manner, you shut down. Completely. Ignore. Pretend they don’t exist. Or worse yet, you tell them they are overreacting, being unkind / harsh etc, and you blame the victim for crying out instead of the exploiters?
Is this what your “advocacy” is founded upon?
And to the parents doing this. Do you really want your child to grow up in this kind of world, where they will most definitely be exploited in exactly the same way, or even more clever ways than you have devised? Do you want your child to be made to write freebie chapters in someone else’s book and never ever be presented as a respected author? Well, your actions speak very loudly, do you not know? Children listen intently.They are also watching. Other parents too. If you treat your autistic child and autistic adults this way, what kind of social world you are creating for your child to grow up into? Or maybe you just don’t care because you’d be dead and gone, and done with your time in the limelight anyway? Too hard a truth to face squarely?
Or … do you want your autistic child to grow up and live a full and happy life, supported by a loving community that respects your child’s embodiment? A community of autistic and non-autistic allies who understand and stand up for one another?
Have you ever once stopped to wonder at the extremely high suicide rates among autistic adults then? You kid will grow up to join the ranks of autistic adults, you know?
Oh, oh, oh, meltdown, drama, overreactive, emotional dysregulation, poor Theory of Mind, lacking in social skills, no empathy… everything is thrown at those of us who dare to speak, the entire arsenal of weapons. We are like pimples being blown up with your super power anti-autistic hooha bombs.
On the subject of my dreadful lack of social skills and uncomfortable way of speaking the truth… Well… I’ve spoken up equally bluntly and directly, and stood up BEHIND (never in front of) other marginalised people, other disabled communities and I am a fierce ally of the LGBTQI++ movement, and none of them have ever told me I was too forthright when I championed their causes without usurping their voices. I do so because I really care, because of relatives, friends, loved ones. But I never dare to claim expertise, I would never dare to take the lecturn and speak with pompous authority about an embodiment that is not my very own, no matter how close to them I may be. I would never think of making others do intensely personal work for me while offering no gesture of thanks and respect in return, and then claim all the glory as the expert. Yet, funny enough, I seldom see the favour returned with half as much enthusiasm and dedication where it comes to advocating for autistic people. Suddenly, all these disability or diversity experts and activists fall silent, a silence so eerie it roars and screams with the blood of autistics past and the tears of autistics present.
Here is an even more blunt and most awkward truth though:
I am a single, middle-aged autistic woman with multiple other medical disabilities. I have no children for whom to craft a better world, nor would I live to enjoy it myself. For what and whom am I doing all this?
I have no vested interest in all of this. I have nothing to gain, no book to tout, no professorship to defend (not even a postdoctoral position). And I have already lost so much of my precious time and limited energy. What am I even doing here in this circus of circuses?
Lost my marbles. Going back to find them now. Tomorrow, I am making a film about marbles. “Goli”… Lucy will be in it, and I am being paid for this. Long hours, exhausting work, not a lot of money, but good enough to buy Lucy some nice treats, pay for her geriatric care blood tests, and maybe squeeze in that macro lens that I’ve been coveting for over a year now on discount in Amazon.sg. There, that’s much better. Tally ho, Autistic Bunny and Lucy Like-a-Charm!
No, that is not a spelling error. April is coming. It is extremely triggering for most autistics around the world, those of us who are campaigning for autonomy, equity and simple respect for our embodiment, that is. (Of course, there are those of us who will happily jump on the bandwagon for personal gain – “join them at their game if we cannot beat ’em” isn’t a new concept at all. And can I blame them? We are human, OF COURSE, what do you think?) To me, and many other autistics, all this “Autism Awareness” with bright blue lights and bouncy bouncy elevator music is at best cringe-worthy, at worse utterly traumatising. I call it Autism Bewareness Month because of the kinds of “awareness” still being tossed out willy nilly by the mainstream non-autistic world, in what I call the Autism Grand Circus.
Back in 2017, I had no illusion whatsoever about making any difference in the way people perceive a marginalised, stigmatised group of ‘weirdos’ with ‘social deficits’, but I nevertheless threw myself into advocating for my neuro-kin, literally from the day Lucy and I landed on ‘home’ soil. Oh, what a homecoming it was for us!
Singapore is a tiny little city. Word gets around really quickly, and the exploitation began full throttle, even faster than the infamous Dr. Dawn-joy Leong’s typing skills, contrary to a well-known person’s assessment of me:
“Dr. Dawn has no filters, she writes whatever is in her head and the whole world reads it.”
(First, this person completely misunderstands me. Unlike them and most others, including some autistic advocates, I have no ambition, whether social or political. My childhood dream was to flee from humans and go live in a cave – I say that often in my talks and writings. Does anyone read? Nah. Not that person, not most people – if they actually read my work, they would understand me better. I am not the dangerous menace they think I am, nor the desperate and needy power-seeker who wants to save mankind, and I am definitely not in the running to usurp their social or political positions. I still want to abandon humanity and live only with my animals, in fact now more than ever, but of course I cannot pursue it because I am too enchained to the availability of running water and modern loo systems. In fact, I live not for affirmation from others, least of all the neuronormative world and their fickle and nebulous systems. If anyone has read my PhD dissertation, and actually understands what I say, they will know this. I thrive on process, the journey, not end-result. Even in my passionate pursuits.)
That said, I do nevertheless try to ensure, as far as I am able, that whatever has my name on it has been done ethically. Like when I asked to be paid by someone running a social enterprise who ‘invited’ me to speak at their wanna-expose-autism event. Or when some non-autistic parent jumping on the autism bandwagon approached me to write a chapter for their book. Both refused me even an honorarium. Hey, I don’t need their fifty bucks (wasn’t offered in any case), seriously, what were they thinking? I just wanted a valid gesture of respect. Which I did not get. And what kind of example or advocate would I be if I bowed down to neuronormative disrespect for their tiny morsel of ‘exposure’ – what kind of preacher does not walk their talk? (Maybe a neuronormative preacher, but sometimes even autistic ones too? But I am not going to join their ranks, thank you.) The first one even went as far as to berate me, they gave me a lecture about how they were doing me and my people a favour to allow me to speak at their event, and how I was judging them too harshly. Yeah. Well. They didn’t do their homework on this autistic. If they did, they’d have discovered I don’t need their exposure. The other one whined at me, giving the excuse that they don’t earn very much from the book anyway so why should they offer the contributors anything at all? I turned both down. I don’t need those kinds of cheap, debasing public outings. Subsequently, when I heard how my neurokin were treated by these people, I was angry but not surprised. I really truly don’t blame the autistics who accepted unpaid work associated with these people, those autistics who bowed their heads and just did what they did for the platform and exposure on offer. After years of being silenced, the mere chance of a soapbox – any kind – is an ‘opportunity’ indeed. And how else is a social outcast to emerge a survivor in this mangled social-political system anyway? That’s how the normative world operates Even towards their own kind. Mutual exploitation is the key to survival in that system.
Where are we now, Singapore in particular, as we approach April in 2021?
More than four years since I hit the ground running, some progress has indeed been made. Not all because of me, but I will not put on false humility and say I have achieved nothing at all. Truthfulness is something the normative world generally shuns, and it is something many (again not all) autistics possess. I have indeed made some difference, and I will own it, warts and all. In fact, a lot for one insignificant middle-aged autistic person whose strongest desire is to run far away from all things human, anyway. I am particularly proud of what the Asia Pacific Autism Conference 2019 achieved – first time ever in Singapore a major autism event featured actual autistic voices at all, and this one on multiple levels (except the very top, of course, no keynote by any autistic researcher, to much to ask for at that stage?). For my role in that, I suffered autistic burn-out. Was it worth it? I don’t know. All I can say is that I never did stand to gain from any of my un-paid efforts at advocating for respect for autistic voices, and somewhat fierce insistence on autistic leadership (disabled leadership also). Nevertheless… Hey, the words “neurodiversity” and “Autistic leadership” have even been uttered by a politician in parliament at last! Kudos to them for their determined and committed support for the autistic community. The Autism Enabling Masterplan was produced by non-autistic researchers and curators, but for the very first time in Singapore, a sizeable number of actual autistic persons were consulted. Not a perfect document by far, but something I never thought I’d live to witness, and I heartily commend and support that monumental effort. We need to work together after all. And of course, the masterplan is being rivalled by a well known autistic activist (who I vigorously pushed forward in APAC19, despite some reservations from key people) with his very own alternative masterplan. That is what autistic people do, we see from different perspectives and we are now at last emboldened to speak out. This autistic activist is now being promoted as Singapore’s autistic leader. I congratulate him and wish him well. I pulled out of his forum due to differences in ethos, but I will not actively stand in the way of any autistic person wanting to gain ground in a realm that rightfully belongs to us anyway, regardless of my own personal and professional stance.
Yes, I went into this arena all senses aware – I know, I know, the cost is always heaviest for the forerunners, those who first spring a new idea at established tradition, especially when this novel concept threatens the very foundations of power, and more so if delivered in such a seemingly direct and ‘brash’ way. Add to that cost, there is inevitable betrayal by those I advocated for. It happens. Humans, again. We all are, even autistics. Needs to be reiterated too, because autistics are not seen as humans. To the normative non-autistic world, we are either superheroes (though always misfits) or just hopeless social outcasts – and sometimes we are promoted to the limelight as useful and obedient appendages or lackeys of normative authority.
2021 – as many of us autistic people brace ourselves for “exposure” of all kinds during April – World Autism Month or something like that – here in Singapore, I continue to see events about autism by non-autistic speakers. One recent one had a non-autistic male person speaking about autism in females – yes, laugh or cry? I did both. And the latest rude shock to my already exhausted brain to absorb was an advertisement for a learn-all-about-autism online thingy with their one and only celebrity speaker – wait for this… and ring that huge bell after the revelation… – none other than a non-autistic parent who has written a book and is going around educating people all about autism while touting her book! (Mind you, if the title said, “Learn about non-autistic parenting of an autistic child from the non-autistic viewpoint” it would make better and more accurate sense.) BING BING BONG BONG!!!! Yes, that’s the bell, but I forgive you if you thought that was my brain being crushed by a large metal bowl. Not far from the truth. And? After the beautiful glow provided by the largest autism event ever run in Singapore, telling people about how they should address autistic persons using identity-first language, everyone is still insisting on person-first terminology. And why? They won’t say, so I cannot know for sure, but autistics the world over kinda ‘know’ that this pleases the non-autistic parents. You see, autism is still viewed by non-autistics as an aberration and something to distance personhood from. Like a disease. And autistic adults are more often than not simply bypassed in favour of non-autistic parents. As if their children are never going to grow up? Then again, current statistics put autistic life expectancy at 50 – the damage is by suicide. Thank you, world. Hey, it’s ok to be Chinese, Indian, Malay, Eurasian in Singapore. But to be autistic, and proudly Autistic, is a no-no in most part at the present moment.
“Nothing About Us Without Us.” Right now, it doesn’t appear to be the case yet, does it?
It is still the normative way.
Survival 101 for Autistic Folks: Behave yourself. Take on the normative social schema. Do what the normative do, practice hard. Become a pantomime of neuronormativity, the better you are the more acceptable you will become. Learn to judge your performance by neuronormative measurements or they will put you through “intervention” programmes like ABA, which is used on animals (though animal behaviourists are slowly moving away from even this approach). Oh, and never ever speak the truth straight from your head, always dispense snippets nicely couched in neuronormative-approved dressing. Even among those in the general disabilities sphere. Acceptance declared is not always assured in action. Autistic people have had to learn the hard way, and I do not lay blame on those of us who are trying their best to play the game. I am only very sad that they are probably unaware of how the normative world still perceives them. Or maybe they are? Regardless, I do have hope that perseverance will lead somewhere in the future. Just without me in the picture.
Change does take a long time to happen. But I am moving on. I’ve done my time and paid my dues, so to speak, and the price is more than society has a right to ask from me. Whatever I gave, I did so willingly. Now I leave this arena with good conscience. I never wanted to do the thankless, grimy, grim and grisly work of debris removal and cleaning the cluttered pathways anyway. But I did what I could – without donning gloves or protective masks and suit. Not such a ‘princess’ after all, am I? Ah, another label from those who utterly misunderstand me. Now, I just want to go back to living in my little humble bubble. Especially in April, the most excruciating of celebrations in the year.
Righto. My rant is over – phew! – and so… we can all ‘celebrate’ Autism Month … woohoo! Joy to the world! Do bear in mind, though, that a mountain higher than Everest is yet to be conquered. Oh, but remember, humans have managed to ruin Everest with debris and clutter too. Ponder that.
And no, I will not celebrate April as Autism Month. I join with Reframing Autism in this.
And for those who cannot access because they don’t have a Facebook account, I’ve copied Reframing Autism’s post below:
Once again, this April, Reframing Autism will not be participating in Autism Awareness or Autism Acceptance Month. As many of our neurokin will appreciate, April can be an arduous time for the Autistic community, whose voices are often drowned out by non-autistic led organisations and non-autistic individuals, whose efforts to make others “aware” of Autism are at times very damaging, all while the things that really matter – genuine acceptance, respect, support and inclusion – are overlooked. To protect our mental health, the Reframing Autism team chooses to distance ourselves from the Autism Awareness movement and instead focus on preparing for a special event, the Intersectional Identities Symposium on Autism, Gender and Sexuality, to be held on 18 June – Autistic Pride Day – in Melbourne, Australia, co-hosted with The Autistic Realm Australia – TARA. You can find out more about the symposium here:https://www.reframingautism.org.au/intersectional…/
We wish those recognising April as Autism Acceptance Month a productive, invigorating month of amplifying Autistic voices. For any families or school communities celebrating, we urge you to steer clear of blue, and go red instead, light it up gold, tone it down taupe or rejoice with rainbows! For any individuals looking to support an Autistic-led organisation, we welcome your donations which will help us to continue to celebrate Autistic identity, embrace the Autistic community and empower Autistic individuals. To make a donation to Reframing Autism, please visit:https://www.reframingautism.org.au/subscribe-and-donate/
Image description: Watercolour background in blue, yellow and purple. Text reads: “To our neurokin, you are respected, loved, valued, embraced. You are enough.” Reframing Autism logo
I’m not celebrating, this post is just my little rant before I scuttle away to focus on much needed healing and self-care, but I sincerely applaud all the tireless autistic advocates and allies who continue to use April as a time to educate, advocate and influence the non-autistic human realm about Autism and Autistic lived-experience. We all just simply want to live in a better world than the here and now.
April is also Adopt a Greyhound month – something far more worthy of my personal attention and remembrance. It was a humble Greyhound who saved my life and brought wonderment and Beingness to my world. So, this is what April will mean to me. In fact, every day of my life celebrates the existence of this amazing creature.
Thank you, Lucy Like-a-Charm. My Clement Space awaits me…
Pets do bring flashes of joy to our mundane human lives. But Lucy is far more than a pet – though I have had pets and probably may continue to have in the future. Lucy is my connection with the vastness of the universe, while at the same time melding my Being with each and every minutiae of life.
The world around me is ugly. Not because the earth is so, but simply because humanity has sullied its purity. What are we doing to everything that surrounds us? What pathetic fragile deeds of wickedness? What proddings of pathetic vengeance? Piffling entertainment for our tiny myopic self-righteousness? Then there is the large-scale, frighteningly clever orchestrations that have brought us so much misery as a specie, and utterly destroyed our planet.
When the weight of my twisted, mangled and meaningless human realm, when the things I have seen, the subterfuge, cruelty, petty violence and magnified evil all become too much, I find solace in retreating into one permeated with untainted pulchritude. Lucy Like-a-Charm – a humble rescued racing Greyhound – brings the entirety of the universe into my soul. Her elysian presence is my healing, yet her long-suffering, gentle and forgiving endurance shatters my heart. My only grief is that, trapped inside the insidious web of humanity, chained to human systems of shame and subjugation, I am hopelessly unable give to her even a sliver of all that she has bestowed upon me. When she came into my life nine years ago, I thought I was saving her, rescuing her, and I promised her a better life. But it was she who saved me, and opened up the universe to me. What have I given her in return? She asks for nothing. It is this immaculate innocence that brings me to my knees.
I read this beautiful but achingly painful blog post about loneliness just a few moments ago. The photographs of the author’s little dog are hauntingly pure, almost sacred in its revelation of truth. And I was moved to tears by the wistfulness and honest telling of their story. Yes, I still have memories of having lived through a lifetime of loneliness and at some point facing the wretched impossibility of ever finding a true and deeply resonant empathic existence with another soul.
Until Lucy walked into my life. Unexpected, unsolicited and unassuming.
I can neither understand nor describe how or why, but I suddenly found myself in Clement Space – no more loneliness, just lingering trauma from too many abusive relationships spanning a plethora of genres – romantic, platonic and familial – that will take a lifetime to heal, if ever at all. But now, I cannot conjure up the former gnawing terror of “loneliness” anymore, and I am glad for it.
When Lucy leaves me, perhaps that terrible despair might return? I dread the inevitable day. But for now, I can truthfully say that I have found the One Love I have been searching for all my life. And she is not a human, but the most humble and meek, yet the most majestic of dogs, a Greyhound. Perhaps the secret to fulfilment and love for some like myself lies in another specie?
Sometimes, people you once thought were your friends, people who once declared their loyalty, and people you have trusted with your wellbeing create a loud, jarring and painful dissonance when they show their truth to be just the exact opposite, and your once-upon-a-time feelings of trust, comfort and warm fuzziness suddenly turn rancid in the light of the confronting revelation. My guess is almost everyone experiences this anagapesis at some point or other in their lives, and it has nothing to do with autism, neurodivergence or neurotypicality – but rather exists as universal experience of our frail and unreliable humanity.
I am not referring to manipulative socio/psychopathic or narcissistic behaviour, though those have also been looming figures in my life. Here, I refer simply to people who come and go from our lives, people we allow ourselves to trust, like or even love, and too easily but mistakenly depend upon based on their promises alone.
What do you do? How deeply are you affected by this form of undramatic, unremarkable betrayal that can nevertheless cut deeply to the core? Are you hurt because you cannot forgive yourself for your naivety or just angry to be let down? Perhaps a difficult tangled combination of both and more? How do you cope?
The autistic mind finds it excruciating because of numerous and complex reasons. Our mental system is a simple, straight-forward and near literal one. This predisposes us to being ignorant of the subtler human nuances of lies, subterfuge and fundamental personality or character flaws that most non-autistic people pick up and are able to sense far more easily than we do. It’s not that I desire to find heroes, I already know full well there are none among us humans. My perennial problem is that I merely take people at their word without much suspicion.
They say autistic people do not know how to ask for help? I am beginning it is not 100% due to a defect in our neurological make up but rather heavily influenced by the soul crushing lack of trustworthiness of other humans, an acquired wariness from being betrayed once too many times. And the worst of it is the gaslighting and victim-blaming that ensues when we dare speak up about it.
“Trust me to protect you!” or “Don’t worry, I have your back!”
Don’t we all want friends like that?
Not everyone who calls you “friend” is a friend. I am discovering more and more that people who utter these words usually do not or cannot deliver on their grandiose statements. Some of them are merely benign and weak, but many of them will even emotionally gaslight and blame you for ‘misinterpreting’ their promise, or for ‘jumping’ – their glib, easy excuse for dismissing or invalidating your emotional and mental state – or ‘ghosting’ you when you actually need them to activate their pledges of loyalty and support.
After each and every betrayal or abuse of trust, there ensues a huge trauma response from the autistic mind, because we are intrinsically programmed towards clarity and are easily devastated by nebulous, vague and questionable integrity exhibited by those living in the non-autistic realm. Autistics are not all amazing people, by the way: we are good, bad and ugly just like all humans, but we are usually very clearly so, without elaborate subterfuge. In other words, I can quickly spot an unreliable or nasty autistic person from a mile away, but I find it terribly difficult to gauge the character or mettle of non-autistic persons.
Why do non-autistics insist that autistic people MUST learn to live in their world of murky morals, erratic reliability, inconstancy, absence of accountability and vigorous, defensive gaslighting behaviour when called out or pressed to activate truthfulness and trustworthiness? It seems such a dreadful world to be mired in, such an unhappy ‘normality’. But then again, how would I really know, perhaps there are hidden joys and unseen wonderment in this kind of social system that a simple autist like me will never understand?
I refuse to learn to conduct myself according to this kind of ‘normalcy’, but I do want to learn how to navigate the miry pit, the foul smelling bog, without being sullied or destroyed; and to train my mind and heart how to discern and avoid the different varieties and incarnations of Judases existing in the grand spectrum of eclectic chicanery.
Is autism the real deficit or impairment that causes me to despair and become burnt-out, overwhelmed and devastated from steering through this seething, reeking quagmire of amorphous morality?
The next time a ‘friend’ declares to me their loyalty, I must try to remember all the warning signs that choke my past experiences. The truth? I am really fortunate / blessed (whatever you wish to call it) with a small handful of trustworthy and supportive friends. But they have never resorted to such overt declarations of love and loyalty. These friends, they are doers, their actions speak far louder than their absent words. I must learn to ask for help from these people instead of buying into and falling prey to the prevalent culture of floppy twistedness.
Learn wisdom, dear Autistic Bunny. And try to acquire the skill of walking away without being annihilated by the dissonance of anagapesis.
Oh, Winona and avaricious lackey, there are so many ways far better than this. If you would just stop in your tracks for awhile, put down your egos, grandiose hallucinations, self-centred obsessions and really allow your darkened souls and hardened hearts to see Truth, you would realise that just doing the decent thing would benefit you so much more in the long run. And even further, if you could do the magnanimous, truly go the way of Jesus, the one you profess to worship, then the rewards will be reaped by your children long after you are returned to dust and ashes.
Sadly, you are swooping and circling, prodding and stabbing, stirring and whirring, indulging in angry sibilance and meaningless hate so unbecoming of the ‘holiness’ you profess. Everyone can see the moral depravity but yourselves.
History repeats itself, over and over. Ad nauseam. Haven’t you learnt anything from your forefathers, mired in their own misery and bile? They had so much, yet they couldn’t see, refusing to bask in the glow of gratitude and grace, they chose the way of jealousy and loathing. What an unworthy and sad exchange. When will you be willing to break free?
But no, I am not mocking you. The wretchedness growing inside you has enough poison to kill you – slowly, insidiously, but surely. Before you even realise it, your life too will be over. Is this the legacy you wish to leave behind?
It’s not too late to turn around, and move forward into the radiant light. For as long as you have life, I will wish you Love.