John Donne, autism, and ABA therapy
I glossed over something very important in my last post (‘Learning how to sit and operant conditioning’) and that is the resistance of the child, an issue that can be hugely confronting for the parents who are watching the therapy take place. Indeed, I’ve seen a mother call a halt to the whole program after being unable to bear watching her struggling child being physically prompted into a chair. I was certainly shocked the first time I saw an experienced therapist actually do this, and want to say something about it all here.
One of the most striking things about watching an ABA program in its early stages is its physicality. In a culture in which touching another person’s child is prohibited in all but the most exceptional circumstances, the hands-on method of ABA can be jarring. When I first observed a therapist at work, I gulped at how much touch was used to prompt, reinforce, and play. The therapist would take the child’s shoulders and steer them into the chair, sometimes pressing behind their knees to prompt the sitting action; tickle them and scruff their hair when they did well; and spin them around upside down on their play breaks. What was intensely apparent to me was the idea of ABA (at least in its early stages) as a physical interruption: the child’s staring or rocking would be disrupted by the physical prompts of the therapist. It was a way of commanding their attention and shaping it towards different objects.
The idea of ABA as an interruption to some of the characteristic traits of a child with ASD is illustrated very powerfully in Catherine Maurice’s memoir Let Me Hear Your Voice. Maurice (who had a PhD in French Literature) had two children with ASD, and her memoir charts the journey through their diagnosis and treatment, as she wound her way through the minefield of therapies available in New York in the late 1980s. She ended up using a combination of treatments for her children and ABA played a particularly important role, although Maurice herself was initially hugely suspicious of its behavioral principles.
In a social milieu dominated by psychoanalysis, behavioral therapies were considered to be an egregious violation of the child’s autonomy. ‘Behaviour modification is morally reprehensible’, a psychiatrist in Maurice’s memoir pronounces. Maurice herself had enormous misgivings about taking her daughter into behavioral therapy (the journey with her younger brother would come later), but the empirical validation for it was too compelling to ignore. In Lovaas’s (1987) famous experiment, nearly half the children in the experimental condition receiving behavioral therapy made major developmental gains, with many of them being able to eventually participate in mainstream schooling.
Despite her excitement about these results, Maurice herself was initially horrified by what ABA entailed. She and her husband watched videos of children being taken through Discrete Trial Training (DTT) and felt appalled (for a discussion of DTT, see my post ‘Learning how to sit and operant conditioning’). It seemed so cold, and repetitive, and inhuman. But with few other choices, they found a therapist and began the program.
Like so many children with ASD, Maurice’s daughter did not want to be intruded upon, and certainly did not want to sit in a chair when she was told to do so. To Maurice’s enormous distress, her daughter would cry and collapse to the floor during this period, with the therapist calmly and firmly prompting her back to the chair. It was unbearable- Maurice was convinced that she was wrong to inflict such a therapy on her daughter, and also developed a throbbing resentment towards the therapist herself for so doggedly insisting that her daughter do things that caused her such distress.
Through gritted teeth, Maurice continued with the therapy, buoyed by her husband’s faith in Lovaas’s data, and the growing evidence of her daughter’s progress. But what I’m interested in here is the moment in the narrative when Maurice describes what for her will be a new way of thinking about her daughter’s autism, and her own relationship to it as a mother. Voraciously reading everything she could find about the condition, Maurice discovers a memoir by another mother of an autistic child- Clara Park’s The Siege. In the thick of the psychoanalytic craze for mother-blaming, and the idea that parents must somehow simply gently ‘love’ their children out of autism, Park finds solace and inspiration in one of John Donne’s religious sonnets. Here are the opening lines:
Batter my heart, three-personed God: for You
As yet but knock, breathe, shine and seek to mend;
That I may rise and stand, o’erthrow me, and bend
Your force to break, blow, burn and make me new.
This sonnet blasted open Maurice’s thinking about her daughter’s autism. It became her ‘cry to arms’. From now on, she would intrude and interrupt; she would not wait quietly at the door for her daughter to come ‘out’ somehow from her condition, but rather break that door down herself. Maurice writes, ‘I did not learn how to wait; I learned how to stalk and hunt, how to overpower.’ The language is so strong here, and surely to some it must jar- how could one use such words to talk about one’s child? How could one strike the tone of Donne’s sonnet in relation to one’s own daughter? For Maurice, however, a mother at her wit’s end, such a vocabulary became another kind of language of love- and indeed, it was partly the sonnet itself which made Maurice able to tolerate the intrusions of ABA therapy for her daughter in the first place. As she writes after the first painful session of ABA, ‘[i]t was because I had been charged up by the idea of an assault that I was able to even consider this behavior modification.’
Her daughter ends up making remarkable progress, changing in tiny steps in front of her eyes. But my point here is that it was terribly difficult for Maurice as a mother to see her daughter’s distress- her cries, her prone body on the floor- and that if she had not been fortified by Donne’s poem, she may never have begun the therapy in the first place. I thought of Maurice as I watched a mother similarly suffering while a therapist held her child in a chair, their body rigid with outrage and distress, their face a scrunched page of panic and refusal. The mother held her hands to her throat, and then to her mouth- and then she flew up from her chair, saying ‘Enough! They’ve had enough!’ It was unutterably awful.
And it was awful, if one looked at it shorn of context, or without the lens of behavioural principles- what it looked like was a stranger holding her child in a chair against their will, while they cried. Who in the world could bear this? No one! But it was also an instance of operant conditioning, in which task avoidance could not be permitted, and in which reinforcement would ultimately shape an entirely new set of behaviours (and possibilities and powers), as indeed ABA would end up doing for this remarkable child.
As a very gentle woman with years of experience as an ABA therapist once explained to me (when I expressed my own misgivings about working through a child’s distress): ‘We are not asking them to do anything unreasonable. We are only asking them to sit.’ Indeed- but in ‘just asking them to sit’, I feel acutely aware that we are also invoking the ‘break, blow, burn’ of Donne’s extraordinary poem.
I think ‘come sit’ must be seen through both of these lenses at once, the scientific and the literary-existential: it must be seen both as a simple instruction, and as a world-breaking, future-making instrument of transformation. This is how I think of it.