We lived, more or less, peacefully and happily – like in a fairy tale. (In fact, the seeds of what would eventually separate us about ten years later had already begun to sprout, but that is part of another story.) The baby had calmed down, little Pavel too became more settled, and we slowly began to forget the horror of Lea’s nightly screams. Yes. We began to forget them. What was going on with her, no one knows, of course. But at least from the outside, nothing could be seen. For several more months.

Until the real, unbearable encounter with autism appeared on the horizon. The diagnosis.

As always, it was her mother who was the first to raise the alarm. God help me, another sin I must confess. When she first said, “Something isn’t right with this child,” I reacted so badly, flared up so harshly and argued so forcefully, nearly started a fight – it still makes me feel ashamed. “You’re always looking for something to poison everyone’s peace and happiness. How can you be so pessimistic? Just look how beautiful and calm this child is!” And she looked at me in that way – both angry and tearful – pursed her lips and pointed out: put her in a sitting position, and she flops over to one side like some poorly made doll; she’s about to turn one year old, and still has absolutely no sense of balance, she can’t even sit. God help us, God!

We went, we showed her, we tensed up, and we waited. And the conclusion didn’t take long: delayed child development, with presumptions of mental impairment. Brace yourselves, people!

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I don’t know why human beings are made in such a way that everything which makes them happy, calm, and content somehow refuses to leave real, deep traces in memory. One thinks of things like “a happy childhood,” “good years,” or simply “youth,” but from those things there rarely remain the sharp-edged, scraping memories – rough as badly poured concrete – with which misfortunes, pains, and fears brand us.

It’s not that people haven’t known this all along – there it is, Nietzsche formulated it better than anyone: Pain always asks for the cause, while pleasure is inclined to stop with itself and not look back. It’s not like there aren’t scientific theories about this either – we spent too long as monkeys, too long in fear and terror of all sorts of things, so through the course of evolution our brains adapted to register and retain mostly the bad and painful, because those are usually the better, more reliable teachers…

Yes, the mind can probably accept and digest all this, nod along and carry on with some other make-believe. It can – but the thing below cannot. The stomach knots in spasms of revolt and rage, and refuses, refuses, refuses to agree. And the mind follows, whether it wants to or not. “Why, why, why am I such a brute, why do I remember only the bad and the painful, in the tiniest sandpaper-scraping details, while everything else – the good, the light, the happy – is supposedly there, supposedly remembered, and yet when I look, all that’s left are some vague, diffuse feelings.” These are the kinds of things that torment me now, standing at the threshold of my sixties. Will it ever change?

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And so we began living with the fear and the rage that nothing can move – and no matter how hard you try, it wells up from inside to make you lift your eyes to the sky, shake your fist and hiss: “Ah, you, you so-and-so, whoever you are in this world, master of it all – why did you saddle me with this? What did I do to deserve it, what great wrong did I commit – did I kill someone, conceal a crime, mislead people – for this cup to be sent to me, to me of all people? Why, why, why?” And you sit there, staring into the void, and there is no answer, no answer, no answer.

And the child grows. And with every passing day, the hope that any second now, right this very moment, she will finally rise up, stretch her shoulders, look us in the eye with a bright, clear gaze and coo something childlike – like all the others, damn it all! – melts away like… well, like whatever comes to mind.

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I’ll skip over a few years here, in which life with the neurodivergent child still seemed bearable. Not easy – just bearable. We tried to accept everything, to let go of expectations, to carry on with our daily routines. After what felt like a small eternity, she finally started walking (at two years and eight months), then slowly and with difficulty began to overcome the “basic things” that every child seems to master effortlessly. Not bumping into objects. Sitting on the potty. Climbing stairs. Not being afraid of the rocking horse.

Of course, from the first days after the diagnosis, this child was in constant physiotherapy. And without question, the work of all these people – good, kind, and skilled professionals – contributed immensely to her development. Today, with the distance of years, that becomes clearer. But back then, in that frozen eternity – or at least that’s what’s left in my mind from those years, somewhere between her first and fifth – everything seemed to me as if we had entered some absurd universe fashioned in the style of the ancient sage Parmenides: there appears to be movement, but look again, and there’s none at all. The world only pretends that something in it moves and changes. The truth is that everything is frozen and movement is only a chimera.

Still, in one respect we had enormous luck: in her early years, Lea was not marked by autism’s greatest curse – the inability for physical contact. She was a cuddly, affectionate little creature, a fluffy little bear who loved being hugged, carried, tickled, kissed. Like any neurotypical child. Later, this changed – especially in her teenage years – but then again, what teenager allows their parents to hug and kiss them?

Jumbled memories crowd into my mind: Lea with her ears perpetually plugged because she’s scared of something^[1]; Lea with serious bowel problems that nearly turned into clinical emergencies (but more on that later – it’s an entire separate story that would be almost comical, if it weren’t so frightening); Lea in Gran Canaria – a maddeningly beautiful little doll, with whom we had to be constantly alert to avoid some scrape or outright disaster; Lea at kindergarten, where we first encountered the problem that would torment us for years (how exactly does one educate such a child?); Lea with a patch over one eye, because at some point she began developing severe strabismus – and this was the only period in her life when she appeared outwardly impaired. Lea, Lea, Lea…

I recently asked Paul how he himself experienced growing up with this sister. (I don’t know if it’s normal or not, but only now is he beginning to open up and gradually share the deep, always suppressed, always hidden fears, tensions, and insecurities that it all involved for him.) His answer was a little paradoxical, a little aphoristic, and downright crushing – at least for a father. (Did I mention already that my son is the most intelligent young being I know – and by now also the best, the most intimate, the closest friend I have; it seems we’re wired in intuitively similar ways)…

“I was Willy Loman, and Lea was Elvis Presley.”

Do you understand what this boy is telling me? I was nobody, and Lea was the star.

I froze, of course, and it took some effort not to show my shock at such a direct, so merciless reply, in which – whether I want it or not – I read a reproach about lack of parental competence. Paul had always felt completely overshadowed by the force with which Lea demanded and received the lion’s share of parental attention in this house. I myself, having grown up in an atmosphere of fierce competition for parental love and attention between me and my older brother (in which I quite likely played the role of Lea, rather than that of Paul), know all too well what jealousy can lead to in a child who feels displaced, pushed aside, squeezed out of the centre of parental attention by the appearance of another, younger being automatically endowed with privileges. Things can get truly ugly – I probably don’t need to explain that much.

Thank God, Paul has all the virtues of German upbringing (or maybe even the genes?) which never once allowed him to treat his sister with aggression, not even for a moment. He suffered – but kept silent. And he bore it all like an adult – in fact, better than the adults. As for my own failings with Lea, I still have much more to tell.

My son, my hero!

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And so, we find ourselves in the year 2001. Lea turns five, Paul – seven, Doreen – thirty-seven, and I – forty. Around this point, the meat grinder kicked into full gear. I’m sorry to use such a drastic metaphor to describe my feelings from that period, but that’s the plain truth. From then on, right up to her eighteenth year, Lea was something like an embodiment of Attila, the scourge of God. Until then – whether because she was still small, or for some other reason – her autism had manifested in relatively quiet, somewhat calm forms. But after the age of five, she began to unleash herself – and more and more so, wham-bam-boom!

The usual scenario looked something like this: in the middle of whatever peaceful, banal family scene you like (cooking, eating, talking, watching TV – whatever you please), she suddenly would let out a scream, as if she’s being slaughtered, and start banging, flailing, scratching, biting, kicking, screaming, smashing and throwing everything within reach. No warning, no signs of an approaching storm. It all happens in an instant and then lasts for hours, until she finally calms down and settles. And this went on constantly, day after day, without us being able to understand a thing. Why she did it – we didn’t know. We’d be walking down the street, it’s raining. She screams and hurls herself into the nearest puddle, lies on her back and starts rolling like a little donkey. We knew it was useless to try and intervene, because that would only worsen the attack, but the people around us didn’t know that. And then it would begin…

Yeah, the people. How many times I wished I could just wave a magic wand and sweep them off the scene. It happened – once, twice, a hundred times – that some random people, and sometimes even police officers, would decide that we were some horrific, pathological parents who had just subjected their child to some kind of sophisticated (because invisible) torture, and that their supreme civic duty was now to rush in and start pummelling us with words heavy as road rollers. Doreen would endure more; I would explode like a landmine on the spot, while Lea – for whom none of this even existed – would usually continue her St. Vitus dance, during which we had to watch both her (to make sure she didn’t bolt under a car, because that too happened sometimes) and the enraged citizens around us, who refused to hear the word “disability, Disability, DISABILITY.”

And life, of course, went on. Little by little, the child began developing some motor and mental abilities we hadn’t expected. She learned to climb on the playground equipment in the park – with great effort and without much prompting from us – and it was clear this gave her the same pleasure it gives all other children. She learned to play on the computer, which we got her the moment it became clear that these machines interested her. She learned – oh God, what am I forgetting – simply to speak. With very few words, with very incorrect and confused grammar (a phenomenon typical for autistics, who repeat phrases they’ve heard word-for-word, exactly as they heard them the first time, and then never alter them) – but she learned!

She always played alone, always in total isolation, with no contact whatsoever with other children (except in kindergarten, but that doesn’t count, as it came from the teachers, not from her), and she was completely incapable of self-defence – something that later turned out to be of enormous importance in one of the great “mysteries” surrounding her. I remember once, as usual, I had left her to climb in the park while keeping an eye on her – and suddenly, to my horror, I discovered that some little boy was beating her methodically, and she just stared at him, not even crying, just looking at him askew and taking the blows without moving from her spot, without fleeing, without raising a hand to defend herself or falling apart. It makes you want to burst out crying yourself – and never stop.

To shorten this torrent of completely chaotic memories currently flooding me, I’ll move on to the next “theoretical” phase – that is, to explain, as far as my strength and knowledge allow, the “foundations of autistic behaviour.”

Autism, as far as I know, is characterised primarily by two main features:

First, the inability to engage in normal communication and a tendency toward hermetic isolation from others (this can range from a total lack of speech to seemingly chaotic, nearly incomprehensible phrases understood only by the “initiated,” whose meaning becomes clear only after – and if – someone close to the autistic person explains them to you).

Second, an almost compulsive – that is, inflexible, forced, mandatory – insistence on the unchangeability and constancy of everything that surrounds the autistic person. “The mountain must not move,” says one of the characters in Kurosawa’s The Double – and if there were a motto that described autistic fixations as briefly and clearly as possible, that would be it. Nothing can move, nothing can be shifted, nothing may change its place, form, or even colour. Everything must remain exactly as it was first perceived, during the first encounter. Either that – or we scream, smash, and fling ourselves around like crazed little animals.

This again is linked to the central motif in the entire theme of autism – sensory overload. The unchangeability, the immobility of things, is one of the few (and sometimes the only) ways the autistic person has to exercise some form of control over an environment whose main characteristic is complete unpredictability, chaos, and threat. “I allow no changes, therefore I exist” could well be some sort of autistic equivalent of Descartes’ maxim. And of course, this is not a conscious, wilfully chosen action, but a total lack of alternative. He or she simply cannot do otherwise, because then everything would dissolve into total chaos.

What does this mean in practice? Well, every child, every person loves entertainment, right? Autistic people love it too. Films, audiobooks, music (especially music!) – autistics adore such things. But unlike the neurotypicals, who get satiated with something after a few repetitions, they don’t. Just that simple, just that brief. This is why, after one, two, or even more years and let’s say five hundred viewings of the same children’s film, the same fragment of a song, the same melody reproduced again and again by endlessly pressing the same key on a digital baby piano… when, at some moment of cosmic significance, your child finally changes the tune and begins engaging with something new, at first you simply cannot believe it. This is what a huge part of life with autism and autistic people consists of.

^[1] This is an extremely important signal – keep it in mind if your child does the same. Why should she cover her ears, and not her eyes, when she is frightened? The answer is that for her the most sensitive, the most overloaded sense is hearing, and it causes her the strongest and most painful feelings of confusion, fear, and pain. It took us many years before we finally managed to “decipher” this strange behavior and begin to protect her from the stimuli she was unable to cope with. A quiet, calm environment, poor in stimuli – this is half of the “solution” to the problem of constant, uncontrollable outbursts of “rage,” which are in fact fear and a cry for help.

Zlatko Enev is a Bulgarian writer and publisher of the webzine Liberal Review. He has published seven books in Bulgaria (the children’s trilogy Firecurl, 2001-2005), the novels One Week in Paradise (2004) and Requiem for Nobody (2011), the collection of essays The Heat as the Embodiment of the Bulgarian (2010) and the autobiographical novel Praise of Hans Asperger (2020). His children’s books have been translated into several languages, including Chinese. He has lived in Berlin since 1990.