I wanted to continue here straight away with the next important chapter of our life with Lea – when we get there, you’ll see for yourselves how incredibly hard it sometimes is to pass “through the wall” of autism – but in the meantime a few things happened that made me think another detour, another reflection, is needed here. The thing is, the comments I’ve received from people on what I’ve written so far – without exception in a tone of remarkable solidarity and human support; thank you all – are helping me see more clearly the difficulties I’m facing as I write this. And the main difficulty is maintaining the balance between honesty and exhibitionism – I don’t know of any trickier task than that. That’s why I’ll talk now about something that moves a little beyond the flow of the “pure narrative.”

So, what exactly do I mean? Well – it’s a fine, delicate balance. On the one hand, I’m writing from the point of view and self-perception of a person who doesn’t see himself as a failed father – otherwise this entire story would be completely impossible, just as it was for all the years when I was haunted by that feeling. Only now, when I feel completely okay with all the weaknesses, all the stupidities and mistakes I’ve made and allowed over the years, can I talk about them without sinking into self-pity or trying to hide anything. But on the other hand, of course, stand those very same mistakes, stupidities, and weaknesses. Reconciling these things with one another is no easy task. I’ve already tried several times to give you a clear sense of how inadequate I was in relation to Lea – and this will become even more obvious in the upcoming parts. I was also inadequate in relation to Paul – for many years. Simply put, I have problems with normal human closeness – it exhausts me, stresses me, often fills me with aggression, and so on. I can manage only for short periods, especially if it involves some sort of analysis. I’m extremely good at uncovering the hidden causes of a given family conflict, because it requires my head to start working. But when it comes to “simple human sharing” – of emotions, nonverbal signals, all that – I quickly become unbearably bored, simply because I lack a real sense for them. To me, these are “empty words” and “a waste of time,” no matter how much I try to understand their meaning as mutual therapy or whatever it may be. That, I suppose, is the main indicator of my own place on the spectrum.

And yet, somehow, things in our family structure do function – if not in the standard ways – just as certain functions in the human body can be restored after the loss of the organs that normally perform them, taken over instead by other organs or systems. We are everything but a standard family: we don’t live together, we don’t share daily care, struggles, and achievements in the ways most normally functioning families do. And yet none of us doubts that we are part of a family – one that continues to function as a family, not merely as a group of people connected by genetic ties. That’s precisely what I want to share with you – as a signal of hope, of optimism, for all those who may feel themselves “not quite capable of normal human relationships.” Oddballs. Eccentrics. Difficult characters. Asperger’s.

Okay, that’s what we are. There’s no running from it. But one can still make the best of it – there’s no need to throw up your hands and give up. And here comes the key question, which you should all first ask me, and then yourselves: “All right, man, you told us that the children chose you over their mother, and then you waste our time describing what an inadequate father you were. So how are these two things supposed to go together?”

I thought and pondered – and finally found just one thing: I was always there. I was never absent; I was always present. I might have stood beside them like a spare tyre, I might not have been capable of sharing the nonverbal parts of family life, I may often have been plain inadequate – but I was never gone. That’s all. I took care of them without evasion, I always stuck to iron standards of fairness – even when that hurt them or drove them away from me – and I tried to learn from my mistakes. And in the end, after many years of wandering, they all accept me as the person I am: their father, her partner – the one who will never abandon them and disappear, leaving them to manage on their own.

God help me – these are big words. I hope I don’t end up sobbing one day in a paroxysm of despair and regret because I dared to open my big mouth. I say them only because I have no other explanation. And because, however strange it may sound, maybe this really is enough to make a person feel valued and loved – despite, or precisely because of, Asperger’s. That, at least, is my answer. My explanation.

Right. I’ve said what needed saying. Now back to the story.

⸻ ❦ ⸻

Breaking through the “wall” of an autistic person is an extremely difficult task, as I already said. In the years before Doreen finally managed to do so, we understood very little about what was going on in Lea’s mind. For instance, we didn’t understand that she could be driven to madness by things we ourselves couldn’t even perceive: the hum of fluorescent lights, the creak of doors, sometimes even such “natural things” as a slightly raised voice or a face twisted into a nervous grimace. In a way, autistic people are like planets without a protective gaseous atmosphere: all those meteors and smaller meteorites that would burn up without a trace around protected planets strike their surface directly, without resistance, with explosive force, and leave deep craters behind. And what was even worse, even harder to bear: all of this was bound up with a total inability to share those things, to reach out to others, to make some kind of connection.

Was the Apostle himself perhaps a person on the spectrum? What do you think? To me, there is no more laconic description or summing up of the autistic universe than:

“I am alone. There are no others.”^[1]

Now, from the distance of so many years, it’s easy to identify and specify all the warning signs that she and her brother were sending to us – and perhaps primarily to me, since I was closest to them. To me, with my total inability to decode those signals. Naturally, those things didn’t pass over me without leaving a trace – the emotional and psychological strain was becoming more pronounced, I was beginning to feel more and more clearly that something was wrong both with them and inside me. But the armour of the ego allowed no deeper penetration – all those things bounced off me like peas thrown against the Great Wall of China (whoa, now that’s one splendid metaphor I cooked up here). And so we went on, clawing our way forward.

But sometime in mid or late 2009, it became utterly impossible. As always with Lea, the crisis had been building for a very long time – in this case, more than a year – but we had all preferred to ignore the signs rather than fight to decipher them. And what could one do in such a situation? She simply wouldn’t say a word, wasn’t capable of giving any explanation for her behaviour, but was resisting school more and more stubbornly, quite literally like a little mule, without speech but not without will. I mean, of course, she’d been able to speak for a long time, but the things she said were strictly confined to the realm of immediate daily needs and routines. Anything beyond that remained locked behind seven seals – even something as oppressive, as crushing, and as devastating for a child as what I’m about to describe.

The airport incident should have been the first real alarm bell, the one to show us we could no longer ignore the signals she was sending. But we carried on for a few more months. Until it became clear: no more. Lea was obviously beginning to lose her footing; her development slowed down further, she closed off completely, and the only moments of calm and release she seemed to have were the Sunday afternoons she spent with her mother and Klaus… in Berlin’s public toilets.

Does it sound childish, naive, absurd, autistic? Yes, of course. But not only that. The great Luis Buñuel, in one of his sublimely absurd scenes, shows a group of people in formal attire gathering for a solemn lunch. But instead of chairs around the grand dining table, there are… toilet bowls. Our guests enter, lower their trousers, and take their places as casually as you like, then begin the social ritual – with obligatory chit-chat, fake smiles and the rest, as tradition dictates. At some point, one of them disappears, locks himself in a small room and… starts to eat. Here you have all human customs and conventions turned upside down and shown in their full conventional absurdity. In the Aztec empire – apparently closer to Buñuel’s world than ours – it was punishable by death to watch the emperor eat. Whether his visits to the toilet took place under public supervision is something the historical record wisely omits.

But let’s return to Lea and her unconventional world. Toilets – public, private, well-maintained or not quite so – always exerted an inexplicable magnetic pull on her imagination. Doreen, with her infallible instinct, had begun to invest a huge amount of effort and energy into satisfying the child’s insatiable interest. For many long Sunday hours, she and Klaus would drive her from one public toilet to another. In itself, this might sound funny or odd – if it weren’t for one great difficulty: Lea, as always, worked with codes. She would say something like, “I want the toilet with blue tiles on the floor, a silver flush tank and…” followed by further instructions, based on which her mother had to reach the corresponding location without a single error – because otherwise, the child would erupt in uncontrollable fury. Let us once again tip our hats to Germany and its total, all-encompassing dedication to “a job well done.” That woman compiled a detailed inventory of the attributes of all public toilets within a fifteen-kilometre radius, so that eventually she could indeed guess the desired toilet’s location with near one hundred percent accuracy. And Lea was endlessly happy during those Sunday excursions. Thanks to Doreen and Klaus.

 

 

Klaus, the great! All of us owe this man such enormous gratitude, I don’t even know how to express it. In some unfathomable twist of universal justice, Doreen had found the one person capable of helping her in this impossible struggle. I never witnessed a single moment when he lost his temper, when he snapped at something – as I routinely do, or as most people with fragile nerves. Always dedicated, always present, always steady like that cornerstone with which every structure must begin. Many years passed before I grew enough to accept him as a family member and close friend, but today it feels completely natural to all of us. Klaus is with us, and we are with him.

A deep bow to you, man of a giant soul!

 

^[1] According to popular Bulgarian myth, these are words attributed to the Bulgarian national hero Vassil Levski. He is said to have given them as a response to the Ottoman police and judges.