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.
***
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.
***
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.
{ 23 comments }
Chris Bertram 04.05.23 at 12:35 pm
Thank you so much for writing this Macarena, a really insightful and moving piece.
Macarena Marey 04.05.23 at 2:13 pm
Thank you, Chris.
Lewis Leavitt 04.05.23 at 3:18 pm
Clinicians learn quickly that “when you meet one person with autism you have met one person with autism.” Relating, understanding, helping, nurturing, communicating, teaching, and loving as a parent is a process that involves close attention and an openness to the person leaving the descriptors : ableism, allism, disability,neurotypicality to the side. Yet as you express so poignantly having a name for a behavior, a relationship, a status in the world helps us organize our understanding of how we relate, understand, nurture, communicate, teach and love.
hix 04.05.23 at 7:28 pm
Cannot say anything about autistic children. A lot unfortunately about the denial of mental illness, which is probably close enough to the op and worth saying.
This is not quite the same as being born with autism, in my case i could in theory still become a human being that functions perfect to the expectations of mainstream society (the statistical probability of that ever to happen must be rather far below 1%) – up to the point that i got problems getting severe disability status (German System).
Anyway, denial: When i did my master degree at age 37, my father told me happy i could now become a tenured public servant, to give one particular drastic example.
He knows the rather strict health requirements very well. But since mental illnesses do not exist, i am perfectly healthy. That he could watch me lie in bed, or play computer games all day and rarely dare to speak to any other human for a decade or so, that just did not seem to have happened. Neither did any diagnosis i finally did get at around age 30.
It was also no reason to get me any professional help. When i confronted him with not getting me any help at least when i was younger and rather clear cut his responsibility- it was already pretty bad with around 13, he told me he did not know, he does not remember and neither did my mother. That is, he does not remember me having any problem- mental, physical, general happiness. As a teenager, i knew what i shall under no circumstances do – from remarks that psychiatrists and psychologists will just tell them what they did wrong (yes they would have with good reason) while crazy all themself.
According to his own assessment my father remains in perfect mental health and very severe physical condition. That is no new assessment during old age. Rather one i am used to hear for all my life. He was almost sent into early retirement at around 40. He was unable to do night shifts due to rather obvious mental health related problems. Severe stomach pain by physical cause it was for him.
My father is not particular unique for his age group in particular. I have even encountered a number of people with decade long histories of mental illness, in disability pension for just as long that would not get official disability status, not even “chronical ill” status in one case for the purpose of reduced co payment for medication, just because they did not want to have a paper explicitly saying they are disabled. What exactly them getting a pension due to being, after rather strict criteria, unable to work in any job does imply about disability seems to be lost to them in that context.
Got two autistic acquaintances. It is rather obvious that they do not receive appropriate support. Note the term appropriate. In terms of financial investment one of them received rather a lot. He even ended up in expensive special needs care homes and disabled workshops, getting kicked out there – with an at least average iq and the way i got to know him (with better medication than in the past to be fair) rather harmless to non existing temper tendencies when things do not go according to his structure.
Frankly, half of the time he complains and is put into the autistic is difficult again box, he complains about things that the vast majority of mainstream society is not expected to keep up with.
I also wounder, how long would it take for a super neurotypical in general healthy person that is put into a disabled workshop to turn violent. The situation would be one would be doing the same repetitive task for 1,30 or something Euro an hour over and over again for years. No pressure to perform or anything. On the contrary, it is obvious the output does not matter. Maybe one of your co-workers with a more sever disability would even put things together a social worker would put apart at the end of the day just to be reassembled the other day.
The co workers would typically have disabilities resulting in major iq limitations. A bunch of social workers on a regular payscale would constantly make notes about deficiencies of your social competency to justify you being there. A list they might even read out to you if you say you think you are at the wrong place.
mike harper 04.05.23 at 8:33 pm
We are another member of your class. Not as a difficult position as you. Enjoy this child as long as you can. Hopefully the decisions you have to make end well. We had to ignore advice to institutionalize our son. That was the correct decision. Others of our friends in the class had to because of violent and criminal behavior. Sad.
KT2 04.05.23 at 11:58 pm
Macarena Marey, thanks for sharing.
Please communicate to Gali for me … ?????????????????
Lucky Galileo.
Lucky you – for Galileo to be the conduit “… 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.”
Dr Galileo then. Stripping a fish of it’s medium – water – and freeing the fish from that ableist ‘watery’ paradigm is harder than rocket science.
Lucky you. Lucky Galileo.
MM: “The truly difficult thing, … is how to de-internalise all this life-long inferiorisation.”
“But I know he will tell me how.”
Lucky you. Lucky Galileo.
*
MM: “… 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”
You are probably aware of the “Simons Foundation Autism Research Initiative”
https://en.wikipedia.org/wiki/Simons_Foundation_Autism_Research_Initiative
I feel Dr Galileo and you, have much to contribute to:
“Developing parent-friendly tools for assessing expressive language outcome measures in young children with autism”
Helen Tager-Flusberg, Ph.D.
Boston University
“… and (2) create an approach for training parents in using the ELSA/ELSA-T protocol with high levels of fidelity that will yield assessments of their children’s language in home-based settings that are comparable to the assessments made by trained examiners in the lab/clinic.”
https://www.sfari.org/funded-project/developing-parent-friendly-tools-for-assessing-expressive-language-outcome-measures-in-young-children-with-autism/
*
The two papers below by Katherine Macfarlane may assist in ameliorating the denial, as you said;
MM: “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.”
Which is exhibited by:
“Accommodation Discrimination”
Katherine Macfarlane
Southern University Law Center
Date Written: August 15, 2022
…
“. This Article identifies experiences deeply familiar to people with disabilities to explore how rules intended to perpetuate equality foster discrimination. It focuses on reasonable accommodations in the workplace and higher education to highlight the mistreatment of accommodated people with disabilities.”
https://papers.ssrn.com/sol3/papers.cfm?abstract_id=4190587
MM: “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.”
“Disability Without Documentation”
Katherine Macfarlane
Southern University Law Center
Date Written: February 7, 2021
Abstract
“Disability exists regardless of whether a doctor has confirmed its existence. …This Article challenges the assumption that requests for reasonable accommodations must be supported by medical proof of disability. It proposes an accommodation process that accepts an individual’s assessment of their disability and defers to their accommodation preferences….This Article also contributes a novel analysis of agency guidance, exploring how its support of medical documentation requirements conflicts with legislative intent and the American with Disabilities Act’s rejection of the medical model of disability.”…
https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3781221
*
Timely, as I put in my submission yesterday to the Australian Disability Royal Commission. It contained the above papers.
As Kaci said, reading this has been a real treat for me too. Thanks.
“Seeing Sheldon navigate a relationship with an allistic (non-autistic) person has been a real treat for me.”
~ Kaci Ferrell, “The Big Bang Theory season 6 episode 1 review: The Date Night Variable”
https://www.denofgeek.com/tv/the-big-bang-theory-season-6-episode-1-review-the-date-night-variable/
KT2 04.06.23 at 12:03 am
Emojis to Gali rendered as ???.
Thumbs up, hands up, run, sun, ball.
Translation: Let’s play.
Apologies if I am being too allistic!
John Quiggin 04.06.23 at 9:34 am
Thanks for this, Macarena.
I’m dealing with a troubled grandchild now. Has had an autism diagnosis but this doesn’t fit the problem, which has many facets. Many of the same issues seem to arise. For example, labelling is a problem, but without a label you can’t get any help.
It seems as if you are navigating this better than we are, perhaps because you have had years to work things out.
Icastico 04.06.23 at 5:31 pm
Thank you for this.
rivelle 04.07.23 at 7:27 am
For some time, I have been a little bothered by the banishment of words such as “autistic” and “schizophrenic” from common, non-clinical language. In contrast, “depressing” and “psychotic” seems to have escaped this prohibition.
I fully concur that the common use of the e.g. word “retarded” as an epithet has the poisonous effect of stigmatizing those with developmental disorders and deprives them of human dignity.
However, by banishing “autistic”, “schizophrenic” from our non-clinical vocabularies are we engaged in the type of denial that Macarena Marey discusses above?
What follows may be little better than merely anecdotal, but I can offer some personal reflections as someone who is a clinical depressive. Rather than recoiling in pain by typical uses of the word “depressing” – e.g. “God, this movie is depressing!”; “she’s a very nice person, but she’s so boring to hang out with it’s, like, really depressing”; “the media circus around Trump, granting undue attention to his antics and normalizing his amoral extremism, was repeated today with depressing predictability” – I’ve typically taken these instances as potentially an indication that clinical depressives can be readily understood by the broader population, clinical depressives can be empathized with and thereby accorded human dignity.
Depression is a universal condition and in a normal, healthy person can serve a useful function. In the case of clinical depressives, this particular mental function has become dissociated and hyperactivated into a perpetual condition. In a normal, healthy person depression can be valuable as a braking system upon behavior and thought-patterns which are deleterious. This is the speculation which comes from the evolutionary behavioral sciences. Why did depression develop in the first place? What survival benefits may it have conferred? The depressed state of energy withdrawal stops the behavior and/or thought pattern which is deleterious which can, in turn, lead to a rethink and a redirection.
The space for contemplation which can be opened up by depressive states is why depression has long been associated with creativity and with thinking as can be found, for example, in Albrecht Durer’s Melancholia.
If it is the case that is humans need to have a depressive faculty in their brains, then either there will never be a cure. Or a cure will be brought about and depression will cease to exist when there is a major paradigm-shifting evolution into another form or species altogether. Admittedly, I have never encountered such speculation in any of the expert literature I have read and it is merely a science fiction type speculation of my own.
Can something similar be said for the condition of autism? Or are depression and autism two paradigmatically different types of condition?
Macarena Marey 04.07.23 at 12:36 pm
Thank you for sharing your thoughts and your experience. This is very moving. I don’t really have an answer for the question, which is an excellent question. Autism is not something one can just heal, there is no cure for autism because it is a condition, a way of living in this world. This does not mean that it is hard to live as autistic, of course. In the case of depression, I believe, we should try to investigate what it the unease (the “malaise”, the “malestar”, the “Unbehagen in der Kultur” Freud talked about) sympton of. I think that “Unbehaben” has more to do with social relations (and capitalism) than to the soul. As a person that went through severe depression, I do think there is something my brain sometimes just doesn’t produce, and also –at the same time– the way I express my depression and the way it is triggered have mainly to do with a world that is deeply sick. Being “symptomatic” means that we don’t adapt so easily to a world that sucks. This is a good thing and a bad thing at the same time. There is an Argentinian philosopher, León Rozitchner, who developed a theory mixing Freud and Marx. He talked about politizing the unease, politizing depression, and doing this collectively. :-) Talking about it like we are doing right now is very important.
Macarena Marey 04.07.23 at 12:40 pm
Thank you :-)
Macarena Marey 04.07.23 at 12:50 pm
Thank YOU. As it was mentioned in one of the comments, autism is different in every autistic because everyone is an individual. It is not easy, but what have worked for me is trying to adapt everyting to my son and not my son to the “normal” world. I always insist on this to his teachers and the school’s authorities: he will never adapt to the school, the school needs to adapt to him. Fortunately, we are having a great experience with his school, they are very nice and loving. One of his teachers started learning a lot about autism. The rest of the parents are super supportive, and the kids love him. Being autistic is not bad, trying to “normalise” an autistic person is bad: this is what I always repeat to myself. This doesn’t mean that my son doesn’t go to different therapies, he does –including hydrotherapy because we’ve realised that he learns and focuses better when he is the water. But we don’t want him to be “normal”, we want him to be who he is and wants to be. It is very hard, of course, but it is possible. I also see this as an opportunity to learn about a whole different way of perceiving the world.
Also: you are not alone. There is an autistic community everywhere. Reach out to them. :-) <3
Macarena Marey 04.07.23 at 12:51 pm
Thank you :-)
engels 04.07.23 at 1:15 pm
There is an Argentinian philosopher, León Rozitchner, who developed a theory mixing Freud and Marx. He talked about politizing the unease, politizing depression, and doing this collectively. :-)
Interesting. Mark Fisher also wrote about this, as a response to the “privatisation of stress”:
https://www.theguardian.com/commentisfree/2012/jul/16/mental-health-political-issue
Macarena Marey 04.07.23 at 2:04 pm
Yes, Fisher is in this line also! If you can read Spanish, look: chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://proletarios.org/books/Rozitchner-Freud_y_los_limites_del_individualismo_burgues.pdf
And: chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/http://biblioteca.clacso.edu.ar/clacso/se/20191001095622/Rozitchner_Filosofia_y_emancipacion.pdf
among other books and articles.
Maybe I should write about León soon here, is it a good idea? About León on this topic in particular.
engels 04.07.23 at 2:50 pm
Yes I can: thanks! Would be very interested to read a post about Rozitchner.
Macarena Marey 04.07.23 at 5:18 pm
Cool! :-)
philip 04.08.23 at 10:43 am
A beautiful piece of writing, Macarena Marey. It sounds like you and Galileo are lucky to have each other in your lives. For me having the label if autistic was useful when I got it in my late 30s and it would have helped if I got it earlier. However if I got it when I was in school I wonder if would have been put off doing some of the things I have in life because professionals would have identified ‘deficits’ in me. It’s not that labels are bad it’s what people do with those labels that matters.
Macarena Marey 04.08.23 at 11:23 am
Than you <3
rivelle 04.09.23 at 7:29 am
Autism differs from depression and schizophrenia insofar as autism is primarily a developmental disorder whilst depression and schizophrenia are mental illnesses and affective disorders.
What autism, depression and schizophrenia seem to have in common is that a mental function or faculty becomes dissociated from the healthy norm and then becomes hyperactivated into a perpetual condition. In the case of depression, this is the critical faculty that casts a critical eye upon the world and upon oneself. Schizophrenia seems to be the hyperactivation of the self-critical faculty. Autism seems to hyperactivate the brain’s ability to concentrate upon details.
As with much else in human existence, our qualities can be simultaneously both a blessing and a curse. Alan Turing can be taken as an example of a highly gifted autistic who experienced difficulties with social communication alongside repetitive/restrictive and obsessive interests.
https://autisticandunapologetic.com/2021/06/13/was-alan-turing-autistic-what-the-father-of-modern-computing-was-really-like/
This brief article on Rebecca Sharrock emphasizes the painful aspects of her highly superior autobiographical memory (HSAM) or hyperthymesia. Which in Sharrock’s case is accompanied by OCD, anxiety and autism.
https://www.theguardian.com/society/2022/jan/19/its-awful-to-be-a-medical-exception-the-woman-who-cannot-forget
https://www.theguardian.com/news/audio/2021/jan/13/from-the-archives-total-recall-the-people-who-never-forget-podcast
But it can’t be all bad can it? She obviously reads A LOT! She must possess a reading ability and memory retention that many academic type people can only dream of. From what little can be seen from the photographs, she’s a fan of SF and Fantasy. The sort of questions that I wish the journalist had asked her was what is the experience of re-reading books like? Fans of these genres tend to be collectors which likely explains her extensive personal library. Is it even necessary to have the book in her hand when she re-reads or can she simply re-read books via photographic recall? Has Rebecca Sharrock read writers such as Proust, Claude Simon or John Banville who explore the nexus between subjective/objective memory and self (dis)unity? Or SF writers such as Philip K. Dick? – “We can Remember It for You Wholesale”. Memory and forgetting leads Buddhists to conclude that the Self does not exist. How do such reflections strike Rebecca Sharrock with her very different lived experience?
In my above post, I suggested that rather than stigmatizing clinical depressives, commonplace uses of the word “depressing” might instead lead to empathy and understanding via the universal experience of depression as both a negative and sometimes positive state of mind.
It would be a case of silly denialism to forbid ourselves from describing QAnon followers as the being the armed and dangerous paranoid-schizophrenics that they clearly are. And to observe that this state of paranoia is a widespread phenomenon that extends beyond the ranks of “proud boy” skinheads and can be seen to have afflicted broad swathes of the American populace. (see e.g. Richard Hofstadter). However our prohibitive condemnation of these dangerous extremists and their mental derangement need not lead to the broad-stroke stigmatization of all schizophrenics, many of whom lead healthy, productive and valuable lives. Nor does it detract from the many potentialities that schizoid states of mind may possess in granting us the types of insights that may be unavailable to non-liminal mind states. See e.g. Louis Sass’s “Madness and Modernism”.
https://thepolyphony.org/2018/05/16/25-years-of-madness-and-modernism-a-review-by-james-whitehead/
Anders 04.10.23 at 7:36 pm
Does any parent of an autistic child have any perspective on Wittgenstein’s private language argument?
Macarena Marey 04.11.23 at 5:15 pm
Yes.
Comments on this entry are closed.