I was diagnosed with Autism Spectrum Disorder (ASD) in June 2017. As I wrote in the “About…” tab of my blog, “Over 50 years of a rather odd life, came to a sudden realisation, with all the clicks and cogs falling to their right places.”
Little did I know at the time, that the sudden realisation was only the preamble of what is as I write, the crawling to a frightening light, of a child I can’t even remember, and whose only ‘happy’ memory is a set of painted wood blocks, neatly ordered in a slide-top box, taken out every day to became the same ‘castle’ in which no toy was ever planned to live, or play.
If I would have to give a name to the featured picture, it would be “Leave me alone”. I never liked being photographed, being looked at; probably because everyone expected me to look back, to show the same colloquial interest which never interested me.
I’ve never understood humans, the reasons why they kept asking stupid questions such as “what would you like to be when you grow up”, just to laugh themselves to urine when the five years old replied “Pensioner, because you don’t have to do anything, and the mailman brings you the money”. Mind you, I was raised by my maternal grandmother, savvy pensioner taking her grandson everywhere, mainly to the popular coffee parlours famous for their Italian expresso machines, dripping the golden bath for my -always at hand- thirsty sugar cubes.
I never had “friends”. My acquaintances could be anything and anyone, from my grandmother’s gossip team, my wooden blocks, collectible Gillette razor blade boxes, match boxes, my blind, talcum powder smelling masseurs (muscular atrophy), to the whole plethora of colleagues blessed or cursed to have met me.
Before being entirely absorbed in 2017 by the Neurodiversity “movement”, my life took a similar, dramatic self-discovery turn in 1990, when following a partly societal, partly family heirloom inherited, devastating guilt crisis, I had “my sins taken away by Jesus” and my civil liberties by a neo-evangelical church. The “love story” ended following nearly two decades of a genuinely successful international ministry, inclusive of two major academic degrees and two postgrads, radio, TV and conferencing.
My fondest memory of the time is a story by the manipulative “pastor” of the emotionally controlled congregation, about an Eastern European dictator, asked by a journalist how is it possible for the nation to adore him, while he basically took away all their rights? Apparently, the dictator asked for a living chicken and to the utter shock of the journalist, he plucked the agonising bird’s feathers clean. Having spread a handful of breadcrumbs on his boots, he put the poor bird down, which obnoxiously started to eat them. “You see?” the dictator said, “you can take away everything from your population, still they’ll mindlessly follow you as long as you give them enough to survive on.”
Keep this in mind…
Returning now to the reason for a title which may stir instinctive reactions I’m expectantly aware of, I remember in 2017 leaving my Autism assessor’s office with a maelstrom of emotions I did not expect, dragging behind myself the barely finished, mostly incoherently mumbled reply to my diagnosing psychiatrist’s question, “How do you feel now, knowing what you felt all along?”
“Confused a bit…” I said, “both liberated and frightened…” because I did not want to tell her out of respect, that my first thought as I mentioned in my relevant post was “angry”, for all the reasons I describe there.
I was sitting in my car, trying to breathe, nearly crying, or maybe laughing as I usually do at funerals, trying to make sense of 54 years passed by, of a life weirdly writing itself like backwards with each new year.
At that time, I was well aware of Neurodiversity (ND) as an umbrella term for all neurodivergent conditions, but also as a “movement”, which started to ‘absorb’ me deeper and deeper, for all the good reasons I understood and identified with, absolutely in love with Silberman’s brilliant “Neurotribes”, the cosy fellowship of kindred spirits and high hopes to change the world for the better.
Another year of academic effort rewarded me by meeting autistic academic Luke Beardon from whom I’ve learned that learning’s prime asset is critical thinking, at both its giving and receiving ends.
It was around that time, when I started looking at my autism with a receiving critical attitude, of questioning if self-acceptance and its projected extrapolation through the less and less “diverse and inclusive” Neurodiversity movement and some of its most “impetuous” proponents, is the right way forward.
I witnessed horrified and in utter dismay, mobs of self-proclaimed ND “advocates”, advocating nothing else but basest attitudes of hunting into silence perceived “dissidents” for taking themselves the liberty to think, having hijacked and mutilated much of what Neurodiversity would have been good for, oftentimes turning it into a lucrative merchandise, and a gathering ground for attention seeking individuals trying to force acceptance of their “valid” “
selfDx”, so desperately necessary to stabilise the insecure reflection of themselves trembling together with the shallow social waters they are looking into.
Traveling for a while with the group, I more and more felt the unease and suspicious dread of a deja-vu which scarred what should have been the best two decades of my life.
I also met “the enemies”; scared, sometimes scarred autistic thinkers bravely unwilling to forfeit their liberty of thinking for belonging anywhere, exhausted yet hopeful mothers, fathers, brothers, sisters, grandmothers, carers of autistic children and adults, many angry and frustrated to have their words and thoughts twisted by self-proclaimed ND representatives, unable to understand which part of “severe autism” can’t these “inclusion and diversity” vigilantes understand?!
I also met the counter-hijackers, same sort of self-proclaimed experts, mostly of their hate and bitter dissatisfaction with life’s immutable unfairness, living of the margins of counter-arguing every shade of neurodiversity they could find, throwing out in an identically destructive frenzy, not only the “baby with the bath water” but the bathtub as well.
And then, I finally understood, my life’s twisted entanglement with a condition I tried beyond “accept” to love…
A “love triangle” sort of relationship with neurodevelopmental conditions which claimed a brilliant mind, with physical conditions which claimed for daily torment my talented body, shaping who I am, hardly ever getting to know whom I should or could have been, or who my destroyed by alcohol, neurodivergent asocial father could have been, or who my benzodiazepines dependent neurodivergent mother could have been, or who my hero partner of 26 years, severely neurodivergent wife could have been, fiercely doing all I can for my neurodivergent children to become the best they could be …
I realised that I have desperately tried to consciously legitimise the subconscious, Stockholm Syndrome attachment to my Autism, to make all the suffering it caused a “love story”, forgetting that from Romeo and Juliet to Hiller’s Love Story, death and suffering rip afresh the deep wounds and scars of all such stories.
I sadly understood that, exactly as in the trading of my liberty in exchange for an only hoped religious absolution from guilt, my efforts to “love” my autism were nothing else but desperate attempts to transform accept and tolerance, into romance…
Wandering deeper, I must ask the hate-magnet question: “Is the derailed part of the Neurodiversity “movement”, with its priestesses and priests preaching and demanding acceptance, while ostracising anyone and all questioning them and/or their motives, their agenda and their Autism narrative representation validity, a real example of a double Stockholm Syndrome, where autistic individuals desperately want to love something which has probably taken away more from their lives than what it gave them, being further afraid to think and speak for themselves, for fear of having the (remember?) breadcrumbs of an illusion of belonging taken away from them”?
The reason I’m extrapolating my own existential struggle, is having worked with, taught with and been with diagnosed autistics clearly going through such soulquakes more or less openly, yet afraid to break free from this double attachment?!
I accept myself as disabled.
I “love” myself in spite of my disabilities.
But no one should expect me to love my disabilities.
I tolerate my disabilities trying to rearrange my life around them, in order to allow myself the space to live, create and care; for as long as I can.
So, what now?
I know that both the Neurodiversity side and the Severe Autism and Autism Parenting side have at their cores brilliant individuals surrounded by even more brilliant individuals, tired of being misrepresented by abusive mobs of questionable entities, diagnosed or not, causing more and more harm to a silent, often unseen majority.
Isn’t it high-time to bridge the shameful divide with a dialogue and alliance of interests already thought of, necessary to advance a unified agenda of making living with autism, a life beyond mere survival?
How? By listening instead of judging and by supporting instead of policing.
Because I can’t love autism, but I can respect and care about us.
There should be more to our neurodivergent lives than breadcrumbs…