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My son’s language is made of a bundle of sounds that do not exist in the Spanish that we speak around the Río de la Plata. He repeats syllables he himself invented, he alternates them with onomatopoeias, guttural sounds, and high-pitched shouts. It is an expressive, singing language. I wrote this on Twitter at 6:30 in the morning on a Thursday because Galileo woke me up at 5:30. He does this, madruga (there is no word for “madrugar”, “waking up early in the morning” in English, I want to know why). As I look after him, I open a Word document in my computer. I write a little while I hear “aiuuuh shíii shíiii prrrrrr boio boio seeehhh” and then some whispers, all this accompanied with his rhythmic stimming of patting himself on the chest or drumming on the walls and tables around the house.
My life with Gali goes by like this, between scenes like this one and the passionate kisses and hugs he gives me. This morning everything else is quiet. He brings me an apple for me to cut it for him in four segments. He likes the skin and gnaws the rest, leaving pieces of apples with his bitemarks all around the house. He also brings me a box of rice cookies he doesn’t know how to open. Then he eats them jumping on my bed. He leaves a trace of crumbles. Galileo inhabits the world by leaving evidence of his existence, of his habits, of his way of being in the world.
When we started walking the uncertain road to diagnosis, someone next of kin who is a children’s psychologist with a sort of specialisation in autism informally assessed him. She ruled (diagnosed, prognosed) that he wasn’t autistic, that we shouldn’t ask for the official disability certificate (because “labels” are wrong, she held), and that he should go on Lacanian therapy and music therapy on Zoom —now I think this is a ready-made sentence she just gives in general to anyone.
The most violent intervention in Galileo’s subjectivity is denying his being-disabled in an ableist world and his being-autistic in an allistic world. We, as a culture, have internalised the terror of disability so deep in our minds that we hurry to deny it. We are not willing to accept that what causes us so much angst and dread actually exists, that it is not an imagined ghost. Denying like this, in this delusional way, is an instinct only humans have. It is so human (so stupid) that it is not a survival instinct. When we deny autistic affirmation, we prepare the ground for its annihilation, i.e., for the annihilation of everyone who is autistic. Being autistic isn’t being an imperfect allistic, a not-yet-allistic person. Being disabled isn’t the same as being a flawed abled person. The denial of disability doesn’t amount to affirming an alternative ability, it implies the ableist annihilation of all vulnerability. But when disability is negated, able people do not survive either. We are born and we die in disability. How did it happen that we dare to imagine we can supersede need? (Maybe by the same process by which it is believed that capitalist profits are meant to satisfy human needs).
The instinct of denying disability is not innate, though. It is an intelligent trap designed to break communities apart, to disorganise, to debilitate us: not to make us disabled but to make us unable, powerless. This is how ableism works, de-politicising vulnerability and unease, making disability, at most, an object of pity and compassion, a matter of bad luck, a fate to try to twist and avoid.
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Galileo’s spoken language has the musical texture of a genre he alone can perform. There was a (short) time when I thought that my role in his life was to be her translator, a mediation between him and the rest of the world. This is impossible for many reasons. The most important of them isn’t that I don’t get him (I don’t), it isn’t that I don’t speak his language (I don’t), or that no one (much less a mother) can or should mediate anyone. The main reason is that Galileo speaks as someone who plays in their instrument a piece that they have composed for themselves.
Sometimes language is comprehensible only insofar as one gets ready to listen to it as if they were in an empty church in front of a little bench where Rostropovich is about to play Bach’s suites with his Duport, and as if he were Bach himself. Then, and only then, we understand that we don’t understand, that we are at the gates of the incomprehensible. When is language more language than when it is spoken so incomprehensibly? The impossibility of interpreting oneself, myself, comes not only from the fact that no one controls or owns language. No one plays their own scores because no one creates their own language. No one, but Galileo and his equals. The autistic non-verbal language is that impossible thing that we try not to talk about when we talk, that we try to drown by talking too much, moving our hands, and writing for example this text. Autistic languages say what can’t be said in any articulated allistic “normal” language. Galileo speaks a language that complements other languages. This language of his is not the opposite of language: it perfects other languages, like music or silence do.
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Does my son have a mother tongue? Do we speak to each other as mother and child? What do we tell each other when we chat? My son’s autism and his magic words lend me a whole new vocabulary for my own neurodiversity, a new and authentic view on my severe misophonia, hyperacusis, and hyperosmia, and on my life-long inability to grasp the majority of the rules of interpersonal relationships, among other things I thought were personal flaws that made me inferior. I won’t mask it anymore. I won’t keep it a secret anymore. Now I know how to talk about it, now I have names to name it. Maybe he will never speak his mother tongue or any other “normal” language, but he has taught me to speak a language in which I now can say what I couldn’t formulate in an allistic alien tongue. Stripping me of all the allistic and ableist expectations that have shaped the way I was meant to raise my children has liberated me from the suffering of trying to meet them myself. The truly difficult thing, besides raising an autistic child in an allistic world, besides being a non-verbal autistic child in an ableist world, is how to de-internalise all this life-long inferiorisation.
But I know he will tell me how.
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