The truth about autism – Vilma Coccoz

A well-known national newspaper informs us that the Oxford Dictionary has enthroned a neologism as word of the year and new addition to the encyclopaedia. This word is “post-truth”, an ambiguous hybrid “denoting circumstances in which objective facts are less influential in shaping public opinion than appeals to emotion and personal belief”. According to another media source, the term accepted is simply a euphemism for the lie, the expression coming to signify the era of manipulation and falsity.

As concerns the battle for autism[1] this designation appears appropriate for the terms in which the ABA industry´s campaign has been waged. According to the detailed analysis carried out by the Canadian professor Michelle Dawson[2], herself autistic, we can observe that: “Not everyone is a behaviourist these days, but so long as the target for behaviour modification is autistic, the ranks are impressive. (…) autism-ABA adherents include therapists, educators and instructors; parents, grandparents, friends-of-the-family; funding bodies, autism societies, professional and pressure groups; professors, lawyers, judges, and journalists; politicians, bureaucrats, and the Quebec Human Rights Commission.” What is the source of this predominant agreement amongst such diverse human groups? What elements support this univocal belief that manages to bring together “the legal, the scientific and the popular”?

An string of irresistible premises drives the ABA industry under the standard that qualifies the method as “scientifically proven” or as “medically necessary”. Dawson provides a detailed analysis of the rhetoric of the arguments centred on false oppositions whose hypnotic power is easily recognisable in propaganda flyers: autism equals tragedy suffering and doom; false premises are then converted into threats: “Either autistic children are successfully treated through early intensive behaviour interventions or they are condemned to a life of isolation and institutionalization. Autism is incompatible with achievement, intelligence, physical and psychological integrity, dignity, autonomy, and learning: either you are autistic or you have access to these possibilities. Either the autistic gets ABA, and comes to resemble a non-autistic, or the autistic is doomed. Autism equals a nuclear bomb, a stroke, diabetes, a terminal illness, being “riddled with pain from a terrible accident”, and again, always, cancer. If you are against ABA then you are for institutionalization. If ABA is criticized then children will be destroyed. Autism is incompatible with humanity: either you are autistic or you are human. If an autistic is deprived of ABA then he will end up being thrown to the floor and sat on by four large attendants in a group home.”

Dawson exposes the artifices of authoritarian discourses like this, designed to spread fear and subjugation. She reclaims the ethical dimension of any possible treatment of autism, advocating for respect for autistic intelligence, rebelling against the immutable misrecognition of the anxiety provoked in autistics by the demand to abandon their little defensive strategies in the face of the programmed intrusion that they suffer, destined to convert the autistic child into a child “like the others”. Dawson speaks out against the ignorance and fatuity with which the “peaks of ability” of autistics are disregarded, those which they make use of in isolated activities or in their extraordinary capacities for erudition. In order to help autistics progress, she explains, it is necessary to take other approaches into consideration, other modes of learning, different to those designed for non-autistics. She ends up comparing the violence exercised in trying to transform autistics, by way of systematic training, with a treatment to make black people white on the grounds that being white is statistically much better. In order to conclude with the very precise observation that “all the crying and screaming and running away are more plausibly the noise and uproar of a child repeatedly forced to give up her strengths”.

The attempt to discredit psychoanalysis by way of defamatory arguments and the recourse, repeated to satiation, of the supposed absence of scientific evidence for analytic treatment is part of the ABA industry´s campaign. The Aprenem association has recently attempted to implement a devious action of denunciation and defamation of psychoanalytic practice by means of a petition. The president of the Teadir association, Ivan Ruiz, responded with an open letter[3]. There was no rejoinder. Why not? Why have the issues raised by Dawson not been taken into account? Where are we to seek the truth about autism if not in the lived experiences, in valuable clinical testimonies, rather than in statistics that are difficult to verify?

 

The lesson of Naoki

“We autistics never have use of all the words that we need. It is these lost words that cause all the problems.” This is the conclusion of Naoki Higashida, the young author of The Reason I Jump[4]. Thanks to the method of writing invented by his mother and an educator he managed to break down the walls of autistic silence, allowing us to participate in his subjective experience in a moving text written when he was only thirteen years old. Constructed in the form of answers to the most common questions provoked by his behavior, Naoki brings to light the key elements of his singular way of being in the world, usually interpreted in an erroneous or prejudiced way. Hoping to be recognized and respected; with the intention of taking part in a dialogue about his condition, with the aim of occupying his place in the banquet of life.

His testimony is organised around his difficulties with speech and language, which Naoki calls “the mystery of the lost words”. From this massive and overwhelming fact are deduced a series of consequences that are going to infiltrate the most diverse aspects of existence. The youth does not deceive himself in his reflection: “People with autism are born outside the rule of civilization”. Because speaking constitutes the essence of humanity, the resonance of speech is something constitutional to the human being that we call, following Lacan, the speaking being.

Naoki confesses that although at time he felt dispirited and defeated in his titanic struggle to free himself from the restrictions of his condition, he was sustained by a firm conviction that being able to express himself was the most important thing in order to live his life like a human being.

Lacan affirms that there is something specific in speech, to the point that the term infirmity acquires its true scope in deaf mutes: “Sign language is inconceivable without a predisposition to acquire the signifier”. He goes on to note the existential abyss “between the initial cry and the fact that, in the end, the human being (…) manages to say something”. [5]

In this margin between the cry and the saying is revealed to us the complexity of our human condition, submitted without appeal to the laws of language, governed by a structure that precedes us and with which each one of us has been confronted during the experience of infancy. It is precisely in the consideration of this vital crossroads that the psychoanalytic thesis of psychic causality is based. This thesis is also valid for autism, considered with Lacan as a stage of subjectivity, a stage of speech in which something has “frozen”.

Naoki indicates the degree to which in this “frozen” stage personal enunciation is problematic. The voice does not knot itself to discourse, it emerges either too strongly or too softly, it can’t be controlled, it is almost impossible to contain. When he does manage, it even causes him a strong pain, as if he were strangling himself.[6]

Naoki admits that he never manages to say what he wants to say. Although he experiences the same sentiments as everyone else, he recognizes that he is incapable of expressing them. He also describes the desperation that he feels in being trapped, prisoner in a body that he does not experience as his own. Without freedom or control, he suffers the greatest solitude and dependency. Overwhelmed by a torrent of words but incapable of maintaining a conversation, his impotence weighs on him, he suffers crises of exasperation. Tormented by his errors, hating himself for provoking rages and disappointment in others, he confesses to having reached the point of wishing he had never been born.

Nonetheless, thanks to his admirable perseverance and the lucky find of a propitious channel of expression, this youth found a way to inhabit discourse. His book offers a series of precious indications for those who try to accompany autistics in their work of finding a way out of their “frozen” state with the emergence of their own mode of saying, always taking into consideration the irreducible singularity of each solution, impossible to universalize, since it is the product of the invention of each subject.

Naoki explains with great precision his peculiar mode of functioning. The sea of words in which he is drowning lacks the order of language. For this reason he has to take support in something that comforts and reassures him. His best allies are letters and numbers, which are unchanging. “Talking is difficult!” he affirms. Hence the repetition of words or of questions that he formulates, which helps him to search through his chaotic memory, fleeting and indifferent to the sense of time, until he finds a memory that can serve his as a reference, a pattern, however insufficient when it comes to the emotions.

Despite his tendency to capture in images the sense of incessant exterior movement, which appears to him “without filter”, without the screen of the fantasy, he advises us of the confinement supposed by the unmeasured use of picturegrams and drawings: “It may be that some autistics seem to be happier with images and diagrams. One then supposes that they have to be present at every moment, but this in fact ends up limiting us. It makes us feel like robots whose actions are pre-programmed.”

Captive in a body that he experiences as alien, he claims that his incessant movement is nothing but the expression of his desire to escape, to free himself. If someone touches me, said Donna Williams, I no longer exist. Naoki also refers to how terrifying it is to be touched by others, given that it implies that the other person acquires control over his body, violating the laboriously constructed defensive barrier designed to avoid the harassment and the intrusion of others into his fragile intimacy. Taking refuge in stereotypical behaviours and rhythmic movements is as powerful as the apparently senseless impulse to run after something that has captured his interest. Jumping, he affirms, is a way of shaking off, of breaking free of the cords that attach him to his body.

With respect to training Naoki responds clearly: “It discourages me a lot to see that people do not understand how eager for knowledge we autistics really are. (…) I would like to learn a million new things! (…) But we need more time for studying and different strategies and approaches. And the truth is that those who help us to study need even more patience than us.”

Here we have the term “truth” in Naoki’s testimony, linked to his intimate experience. It is this subjective perspective of truth that Lacan explored untiringly in providing his version of psychoanalysis. The whole truth, he said, cannot be said. It is impossible, the words are lacking. Nevertheless, this truth, although diminished, is indispensible to us because this is how we manage to capture the real, the way in which each one of us is affected by language, which Freud called the unconscious. The truth of autism is thus the truth of each autistic subject, one by one, in their radical and personal experience as speaking being. We can only gain access to this truth if we conserve the space in which it can take form in a personal saying.

A forum on autism, organised by the ELP, was held in Barcelona in May 2016 under the title ‘Autistics, Resistant to Education?’ This brought together teachers, psychoanalysts, therapists, autistics, parents, educators, local authorities and representatives of political parties.

The success of this convention was the culmination of the incessant work that the members of the ELP have undertaken with the aim of preserving a living space for speaking, in which the fundamental principle is respect for autistic subjectivity, for the singularity for their solutions and inventions, and for their occasional silence.

In Barcelona and Zaragoza, cities that have historically maintained the plurality of orientations in the early treatment of autism, psychoanalysis of the Lacanian orientation has established itself as an alternative, in many cases requested by the parents, many of whom form part of the Teadir Associations. The dynamism of these associations at the national level is admirable. An travelling exhibition of autistic artists entitled ‘The Singular World’, organised in Zaragoza by the Aragon Teadir, has received excellent reviews and public attendance nationally and internationally.

The intervention in the Catalan Parliament by Ivan Ruiz[7], President of Teadir, advocating the maintenance of this plurality of approaches has marked an authentic milestone in the democratic expression of respect for human freedom and dignity.

The different groups of the ELP are planning many activities this year, intended to disseminate our perspective, our way of collaborating with the prodigious work of autistics in making for themselves a place in the world, one that would give shelter to that diminished truth that we all need in order to exist.

 

Vilma Coccoz

Translation by Roger Litten

 

 

[1] Laurent, E., La batalla del autismo. Grama, Buenos Aires, 2013.

[2] Dawson, M., The Misbehaviour of the Behaviourists. Available at neurodiversity.com/dawson.html

[3] Available on the blog of the Forum for Autism.

[4] N. Higashida, N., The Reason I Jump, Translated by K.A. Yoshida and David Mitchell; Introduction by David Mitchell Random House, 2013.

[5] Lacan, J., Geneva Lecture on the Symptom, translated by Russell Grigg.

[6] On the particular dimension of the voice, cf. Jean-Claude Maleval, El autista y su voz.

[7] Available on the blog of the Forum for Autism.