Behavioural Interventions In Autism: holding the middle ground

In this post I resume my review of early intervention in autism. Previously I have offered an overview of interventions, based on the therapies which I used with Dylan, and categorised these into four groups: sensory; dietary and medical; behavioural; and educational. This post considers behaviourist approaches to early intervention.

The middle ground

I was chatting to the father of an autistic child recently about the behavioural programme he is using with his son. When I told him that I had used behaviourist and non-behaviourist approaches when Dylan was a child he expressed surprise: There isn’t usually any middle ground, he observed. People seem to be either passionately in favour or passionately against.

 He is right: behavioural interventions more than any other incite strong feelings among parents and professionals. When Dylan was diagnosed in 1996 there was growing interest, in England, in therapies based on behaviourist philosophy. Some families embraced these programmes while others chose to have nothing to do with them. Twenty years later the behaviourist pioneers have established schools and services which are still used with passion and commitment by some families. The lobby against such programmes, however, continues to be equally vociferous. How could I lay claim to both lands? To explain the view from the middle I first need to consider the ground it lies between.

Behaviourism and constructivism

Behaviourism is the label given to theories of learning which are based on changes which can be observed. The Russian Psychologist Pavlov demonstrated, in the 1920s, that it was possible to train a dog to respond to a given stimulus (in this case to salivate when a tuning fork was sounded) a process known as classical conditioning. Pavlov’s Dog became the foundation for experiments to determine whether children’s behaviour could be shaped in a similar way.

In the 1930s Edward Thorndike and B.F. Skinner developed the concept of operant conditioning to describe intentional rather than involuntary behaviour, i.e. learning that involves a decision rather than a physiological response such as salivation. Operant conditioning is based on the idea that consequences determine whether or not a person will repeat a behaviour; a system of reinforcers and punishers are used to shape a child’s actions away from inappropriate and towards target behaviour. Reinforcers strengthen behaviour and can be either positive (doing something which leads to a reward) or negative (avoiding something unpleasant). Punishers, meanwhile, are used to weaken behaviour and involve a penalty or the removal of privileges.

Other theorists, meanwhile, emphasised the social rather than behavioural dimensions of learning. Also in the 1930s, Lev Vygotsky described the way in which knowledge is built collectively among learners, a process referred to as social constructivism. According to constructivist theory, learning is personal and active; our knowledge builds on what we already know and is influenced by the communities in which we learn. Learning, Vygotsky believed, is collaborative and dialogic; our interactions are experiences from which we emerge changed. This notion of knowledge as shared and co-constructed emphasises the role of groups in educational processes.

As a great deal of school-based learning is social there is considerable potential for autistic children to encounter barriers in the education system. Even before an autistic child starts school, however, the consequences of not engaging in social learning are evident; Dylan did not learn to dress, feed himself, use the toilet or play with toys through his interactions with others. Because behaviourist strategies are based on clear consequences in response to observable behaviour, rather than on the emotional protocols involved in social learning, they are felt to be a potentially more effective approach to educating autistic children.

 Parent and professional (I)

I have found it useful when discussing the behaviourist-constructivist spectrum with students to draw a distinction between education and training. Training, I suggest, is something which a person needs in order to carry out a procedure; we train people to answer the telephone in a call centre, use a piece of equipment or file papers. Education, by contrast, requires people to think critically about skills; instead of simply filing the paper in the correct drawer, we might re-write, re-categorise, disseminate or destroy the paper. Education is thus about promoting thinking skills and enabling us to act creatively in response to a particular set of circumstances.

There is debate about whether preparation for certain roles requires education or training. In my own field of education, for example, some people believe students can be trained to teach as you might learn a craft, while others believe teachers must be educated. You can tell a lot about someone who works in the sector by their language. If they refer to ‘teacher education’ then they are probably committed to promoting critical reflection on practice and to encouraging students to question their assumptions about schooling and society. The discourse of teacher training, by contrast, focuses on achievement against a set of teacher competences. I have always considered myself an educator rather than a trainer and drawn on constructivist rather than behaviourist approaches in my own teaching. My professional practice was therefore to have a significant impact on my response to intervention programmes when Dylan was diagnosed.

 The professional: non-directive therapy

Christmas 2013 028My professional position led me, initially, to reject behaviourist approaches; I opted, instead, for a therapeutic response as far removed as you could get from behaviourism. Non-directive play therapy emphasised the importance of following your child’s lead; it required me to enter Dylan’s world in order to understand his experience and win his trust. Mirroring Dylan’s behaviour involved me spending time alongside him; I would sprawl on the floor copying his actions or run in circles around the park with him, hands flapping.

Non-directive therapy, it is suggested, supports the relationship between parent and child by enabling positive interaction. Some of the pre-requisites for communication, such as turn-taking and imitation, can be promoted through non-directive approaches to play. For example if Dylan threw a toy car across the room, rather than reprimand him for throwing I would throw a toy too. The intention would be to get Dylan’s attention: hopefully I would be able to re-shape the behaviour so that we were throwing soft toys instead of cars, or throwing more gently or into a different space; the aim would be to encourage throwing in turn in order to create a communicative rhythm between us. The key to the approach is to take the child’s lead and not to direct; this is quite unlike a behaviourist approach where the aim is to promote a pre-determined target behaviour.

I have reflected a little on my experience of non-directive therapy in a previous post. One of my key observations is that it made little difference to Dylan’s behaviour but had an enormous impact on me; non-directive approaches enabled me to walk in Dylan’s shoes and thus to develop a better understanding of his world. I think that this helped to strengthen our relationship. I don’ t believe, however, that there was any measurable change in Dylan’s behaviours while I was working within this non-directive framework. On all key measures – toilet training, feeding, dressing, communication, play, accessing public spaces – life was a difficult and challenging as ever.

One day I had cause to reflect. Families with autistic children in my city had been given free tickets to the cinema by a local charity and I took Dylan along. Immersed in my non-directive therapy I followed Dylan out to the front of the auditorium when he ran off. People were still taking their seats. I wasn’t confident that I could get Dylan to sit down. I sprawled next to him by the big screen, squirming around on the floor. Perhaps he’d calm down I thought. Maybe this way I could persuade him onto a seat. Suddenly I heard a voice and looking up saw a face I vaguely recognised. Hello Elizabeth. Fancy seeing you here. I see you’ve got your hands full. A word of advice if I may: it’s all about discipline. If I were you, I’d get on with it. I couldn’t quite place her – had to ask her name. It turned out to be somebody I’d gone to school with; she had three children now, the youngest autistic. He was doing well, she told me, in mainstream school but that was all down to the strict discipline and direction the family had built around him.

 Parent and professional (II)

 What if she was right? Could my rigid adherence to an approach I felt comfortable with be unhelpful to Dylan? While it was natural that my work as an educator would influence the way I chose to work with Dylan, I was no longer just an educator; I was the parent of an autistic child. Could I accept that my preferred approach to learning may not be appropriate for Dylan?

Having children of your own can present some interesting challenges; almost inevitably your practice develops to take account of parental as well as professional experience. If your child is disabled, however, the impact on practice can be significant. For me, the interplay of parental and professional knowledge could involve more than a few amendments to my lecture notes: repositioning myself on the behaviourist-constructivist spectrum would strike at the heart of my professional values. I decided, however, that I had to at least keep an open mind.

The parent: behaviour modification

So in 1997 I attended a conference in London organised by PEACH (Parents for the Education of Autistic Children) a group championing the Lovaas approach. The programme involved working intensively with children for 30-40 hours a week on a 1:1 basis as soon as possible after diagnosis. Based on behaviourist philosophy (specifically Applied Behaviour Analysis) the Lovaas method used reinforcers as part of a programme which built step by step to support the development of communication and re-shape behaviour.

I was uncomfortable at the conference. I didn’t like watching the children who were paraded as ‘proof’ that the approach worked. The atmosphere felt more like a rally than a conference; there were celebrations and exhortations, appeals and promises. But there were a couple of presentations which I found interesting, particularly one by Nina Lovaas which focused on adaptations to the programme which might be required for more classically autistic children who are non-verbal. Although it was still early days for Dylan my gut instinct was that he had a similar profile to the children Nina Lovaas described. On the train home I decided I would trial an adapted behaviourist programme based on what I had heard.

Dolly mixtures and jelly tots

dolly bestbritishsweets.co.ukI took a career break, telling myself that if I didn’t I might regret it one day; maybe I could make a difference. We weren’t in a position to hire the team of aides who would usually be employed to help deliver the programme so I did it by myself. As I’d been used to working full time this wasn’t too much of a shock; I simply exchanged paid work for work with Dylan.

My overall impression of that time is of exhaustion (in another post I’ve shared a poem, Blackbird, in which I attempt to capture some of these emotions). One clear memory I have is of an incident one morning. I was focusing on the development of non-verbal communication through imitation (touch nose, clap, hands in the air, wave, stamp feet, blow). It might not sound challenging but for a three year old child who struggled to remain seated at a chair let alone observe and copy actions it was hard work. The reinforcers (a pocketful of dolly mixtures and jelly tots) were critical. Dylan loved sweets. Once he realised there could be a steady supply by copying me he vaguely obliged. I say ‘vaguely’ because the actions were sloppy; if Dylan lifted his hand somewhere in the region of his face for ‘touch nose’ he would get his dolly mixture. Clapping was the suggestion of hands coming together. Any attempt to observe and copy me was rewarded with a reinforcer from my pocket.

tots bestbritishsweets.co.ukOn this particular morning when I fetched Dylan into the room and gestured to the chair he looked at me then eyed my pockets. In quick sequence he lifted his arms above his head, touched his nose and clapped his hands. I stared at him in shock. He did it again, this time more urgently. Dylan wasn’t sure which action I wanted but keen for a sweet, like Pavlov’s Dog, he performed. I could not continue with this, I thought to myself; it was training and I did not want a performing seal.

The middle way

Later I would soften this position. Although I abandoned Lovaas-inspired intervention I built some of its features into a home education programme I designed for Dylan. I also came to accept that there are areas where training is useful and sometimes necessary; toileting, eating with cutlery, dressing and accessing certain public spaces for example. I therefore drew eclectically on behaviourist and non-directive strategies depending on target and context.

dolly the pinksweetshop.co.ukIn educational settings, however, I resisted behaviourist approaches and while Dylan was at school I insisted on a ‘no food reward’ policy. Because Dylan doesn’t respond to social motivators, food is the only viable reward; while I am prepared to use it sparingly I am uncomfortable with the routine use of sweets. I was more comfortable using behaviourist approaches with my daughter as I could use social reinforcers (‘if you want a sleepover you’ll have to tidy your room’) in a way that I couldn’t with Dylan. The most effective use of behaviourist strategies, I think, employs such motivators; in this sense social learning is actually at the heart of many behaviourist programmes. While I have used behaviourist approaches only lightly with Dylan I would not hesitate to use them more extensively with a child for whom social reinforcers were acceptable.

This raises the issue I keep coming back to that an appropriate intervention for one autistic child will not be the right choice for another. As well as autistic children presenting differently from each other, some autistic children may present differently over time, responding to alternative reinforcers as they get older. At 20, however, Dylan is no more likely to accept a social reinforcer than he was at three; he is not motivated by anything except food and appears not to understand reinforcers based on the avoidance of something negative. As far as punishers are concerned, Dylan doesn’t understand the psychology of the withdrawal of a reward or the concept of penalty; he appears not to be concerned by the impact of his actions on other people nor does he seek the good opinion of others. The extent to which I can orchestrate consequences in order to shape Dylan’s behaviour is clearly limited by this profile.

The baby and the bath water

jelly bestbritishsweets.co.ukIn an earlier post I suggested that choice of therapy depends on the child, parent, discourse and opportunity. While just one of these factors may be relevant for some interventions, behavioural approaches require that all of these be considered. Firstly, the extent to which a child responds to reinforcers will determine the outcomes of the programme. Secondly, the feelings and beliefs of the caregiver are crucial as the programmes are intensive and require absolute commitment. Thirdly, it may not always be possible to implement a programme given the economic as well as emotional investment required.

Finally, and perhaps crucially, the decision to adopt a behavioural programme involves parents in negotiating powerful and competing philosophical discourses. Behaviourist interventions incite strong feelings among parents and educators; this has always been the case but is perhaps more so today than 20 years ago. We now know more about how it feels to be autistic and we have more respect for the behavioural differences which can arise from autistic neurology (alternative responses to sensory stimuli for example). One of the difficulties with behavioural programmes is that they promote norms of behaviour which do not consider (indeed which aim to reduce) this ‘otherness’. It could thus be argued that behaviourist programmes are positioned within a deficit framework in that they aim to ‘fix’ autistic children.

While I understand the tendency to line up in favour or against such programmes I wonder whether we might sometimes be in danger of throwing the baby out with the bath water. Occupying the middle ground promotes eclecticism; selecting strategically from a range of approaches, and adapting these to support my personal principles and beliefs, has turned out to be the most comfortable place for me.

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Other posts in this series:

Images:

Portraits of educational thinkers are via wikipedia; images of sweets are via bestbritishsweet.co.uk and thepinksweetshop.co.uk.

Poetry And Postmen: a parent’s journey through autism

The_Guardian_12_10_2013The Royal Mail Share Offer in England has meant a lot of coverage in the British Press for Postman Pat. “Pat”  Dylan said to me yesterday, pointing to a picture in my newspaper of a City Trader wearing a Postman Pat costume.

I wouldn’t want to return to the days of Postman Pat. Between the ages of 3 and 11 Dylan’s constant companions were soft toys of Pat and Jess which Dylan would not be parted from; we lived in a loop tape of Pat’s jolly theme tune. I tried to think positively about Dylan’s obsession, imagining that one day he would help deliver letters in an idyllic community where everyone knew and loved him. I bought Pat’s educational videos and used these to encourage Dylan to learn his colours and numbers. I attempted to support Dylan’s communication and basic social skills with Pat games and toys. I did my best to turn Postman Pat into a resource.

Dylan’s fixation on Pat during these years answered a need which would vanish one day as quickly as it had emerged. What I didn’t realise, when the Pat era ended, was that he would be replaced in Dylan’s affections with other characters. We have since moved through a range of total and all-consuming interests, the latest of which is Peter Pan. On days when I am fed up with Peter Pan, I remind myself that this interest will also give way in time to new passions and desires.  I say ‘interest’ rather than ‘obsession’ deliberately: this shift in my language represents the transformation my thinking has undergone in relation to Dylan over the years. This post offers some reflections on that journey.

Being Dylan

carlisle 028Another memory of a postman: I am working from home while Dylan and his younger sister are at day care and my husband is at work.  I’m supposed to be writing a report but my mind keeps wandering to Dylan.  Recently, he has been gathering up his toy cars and lining them bumper to bumper through the house.  He spends hours fussing about the line, making choices about which car goes where and seeming to have a very clear set of rules for the making of the line. Once made, no one can touch or interfere with the line; if a car is accidentally knocked, Dylan cries inconsolably, destroys the rest of the line and flails around in distress. My three year old daughter has started copying him; one day I find her lining the cars up just like him, only her play is accompanied by a commentary: ” black one; you are sad; your wheel is broken blue one.” 

This morning, alone in the house, I fetch the cars. I lie on the kitchen floor. The quarry tiles are hard and I like the way the cars skid as I wheel them into position. I squint under the low chassis of one and at the angles made by another. I try and make sense of their colours and shapes and sizes.  My husband has taken the rubber tyres off the wheels so that Dylan doesn’t swallow them and I notice how the cars make wobbly contact with the floor. I am annoyed by this and try to bend some of them with my teeth. ‘Like Dylan’ I think. 

It is a sunny morning and the back door is slightly open to create a through-draft out onto the patio. I run my line of cars across the kitchen floor then up over a chair and onto the kitchen table, then down again and onto the carpet. I am almost at the patio doors when a noise makes me turn around.  Standing in the doorway watching me, a mix of amusement and concern on his face, is my postman. He is clutching a package that won’t go through the letter flap. He is sorry he says – the door was slightly open. I stand up, still holding half a dozen matchbox cars I haven’t been able to fit into my line. I feel flustered and that I ought to explain.  “They’re not my cars” I say at last. “They’re  my son’s. I’m just checking them.” 

By handling the cars as if they were mine,  by squatting down on the floor as if I were a child and by focusing on the sensory  elements of the play I entered a different realm and a new way of apprehending the world.  Afterwards I wrote the following poem which was included in my second collection,’ The Bat Detector’. I’ve only ever published two poems in Dylan’s imagined voice: this one and another (‘Toe-walking’, in my first collection). Reflecting on these early poems I realise they were part of my process of coming to terms with Dylan’s diagnosis and trying to understand his autism.

Dylan’s Cars

Green vintage (top gone, radiator rough on my tongue).
Daddy took the tyre off.
Spin, spin. Yellow van with springy wheels.
I flick my nails against them, make them spin.
Black cab J219 CYO, big and curvy,
Makes the line messy.
I spin its wheels then slam my arm down, let it go.
Silver tanker with four at the back two at the front:
nice and long (spin spin spin spin)
wheel it up behind the van.
Yellow bus, 8 windows one side, 7 and 2 the other,
3 at the back, 1 at the front. 21.
Only 4 wheels though. Spin, spin.
Number 5:  green racer.
Then the  neee naaa neee naaa
thin white car with blue windows
and a red box on its roof.
Good spinner.
Blue vintage next. White roof, long wheel arches,
tyres missing, front right wheel sticks.
Move it into position (nice and slow).

I squat down, chin on the floor,
so they grow big like mummy’s car
and all the others going past
with spinning wheels and flashing lights
and jumbled bits of people:
eyes, mouth, hands that don’t make sense.
This is my line.
Bumper to bumper,
these are my stuck cars with no drivers,
going nowhere.
Spin, spin.

Writing in Other Voices

Writing in another voice was not something that was new to me; it is common practice among writers and is something I had done as a poet and asked others to do when running writing workshops. One of my favourite exercises is to get students to write from the perspective of another character drawn from an envelope of possibilities. My envelope would typically include characters such as ‘undertaker’, ‘vicar’, ‘prisoner’ or ‘refuse collector’.

lightbulbOne year a student approached me after class to say that she had Asperger’s Syndrome, struggled with empathy, and did not think she would be able to tackle the writing exercise. She had drawn ‘Butcher’ from the envelope which she didn’t want to try. Drawing an alternative from the envelope didn’t seem to help.  In the end I suggested to her that she might be able to apply some of the technical principles we had been talking about in class to an inanimate object rather than another character.  The student agreed to have a go and produced a marvellous piece spoken in the voice of a building she was familiar with.  She went on to produce a series of poems spoken in the voice of objects, a project which proved so rich that the following year I included a number of inanimate objects in my envelope. That  year, however, one of the students wrote on her module evaluation:  “I did not appreciate being asked to be a light bulb, thank you.” 

Writing and Parenting as Ethnography

mocassinsI often refer to the Native American saying about not being able to know another man until you have ‘walked in his moccasins’.  I ask students to take off their shoes and imagine themselves walking in the shoes of another.  This is a bit like method acting where an actor attempts to physically experience some aspects of a role which they are to play. 

This process of inhabiting the life world of someone who you want to understand better also reminds me of ethnographic research. In my discipline of education, ethnography is defined as ‘culture studying’ and is used as a framework  through which to understand groups who might not otherwise be accessible to researchers or whose experience of education is so particular that this up-close approach to research is required.  Ethnographic research requires the researcher to gain privileged access to the community they wish to study. The researcher needs to spend long periods living alongside the group, observing group members and shadowing their experience of the world. The researcher needs to become part of the group and to participate within it, observing the group’s rituals and practices, and showing an understanding of and respect for the group’s values.

The responsibility of the researcher in conducting an ethnographic study, I tell my students, is both to the community  being studied and to the research community itself.  In gaining access to a group the researcher has ethical responsibilities to members of the group.  However, the  researcher also has a responsibility to return from the community which she has studied and report back to the wider research world, sharing and interpreting the life world of the culture-sharing community for the benefit of others. This requires the researcher to enter into the world of the community she is studying sufficiently to understand it as if she were an insider, but to retain enough detachment from the community in order to report back to the world as a privileged outsider. 

I sometimes think of writing as ethnographic practice, particularly when I am trying to write in a voice other than my own or encourage my students to write. I also sometimes think of parenting Dylan as a form of ethnography; many of the key features of ethnography I suggest here could equally be applied to caring for an autistic child. This would also apply to the requirement that the ethnographer interprets and reports back to the world as a privileged outsider; parents of autistic children spend a lot of time explaining to others and awareness-raising in the wider community.

Going Native

carlisle 029Sometimes researchers become so involved with the community they are studying that they struggle to retain the detachment required, a process referred to as  ‘going native’. In my last post I referred to a conversation between myself and a counsellor in which we used the metaphor of walking in Dylan’s shoes to describe being absorbed by the process of parenting  to the point of neglecting my own needs.  I can see that spending significant periods of time walking in your autistic child’s shoes, and coming to identify with the meanings they attribute to the world, could be considered a sort of ‘going native’.  There is a fine line to walk, perhaps, between wanting to enter into your child’s world in order to understand him better, and empathising  with his world to such a degree that you forget it is not the ‘norm’. I can see how the latter might happen; families become so accustomed to life with an autistic child that it can genuinely become a ‘new norm’. And if in the process of living with people we tend to take on some of their characteristics and beliefs, why would this be any different if we live with somebody autistic?

But what about the other side of the line? Do the benefits outweigh the potential risks of ‘going native’.  I would suggest that the more I can see the world through Dylan’s eyes, the better equipped I am to intuit his needs and support him to negotiate the non-autistic world. In my experience, it is my attempts to ‘walk in his shoes’ which have increased Dylan’s trust and confidence in me more than anything else. If I have tried to experience something the way that Dylan experiences it, then I am far better placed to help him avoid or cope with the things in life which he finds most difficult.

Woods and Shopping Centres

Christmas 2013 028When  Dylan was very young he used to lie down in the woods and stay there for long periods on his back, staring upwards. During these times he would make noise, squint his eyes and contort his hands in front of his face.  I couldn’t really tell how he felt at these times, nor did I know how to manage these walks so that I could keep Dylan moving. In the end, rather than stop the walks or intervene, I decided to walk in his shoes. This involved me mirroring everything which Dylan did, a response which I knew about having visited the Options institute in the USA, where this approach was pioneered.  Once I was in Dylan’s world I was able to experience the sensory world – the light through the leaf canopy, the wetness and softness of the leaves underneath me, the scent of soil – as he does.  This felt like a gift to me: a way of experiencing the world which convention would have prevented me from having, but which Dylan allowed me to enjoy.

The experience in the woods gave me the confidence to adopt the same non-directive strategy in a quite different environment.  Meadowhall Shopping Centre is a large indoor mall in our home city; while I wasn’t in the habit of going there I had noticed that Dylan sometimes found the environment difficult when we did.  On one occasion this involved a full-blown meltdown during which Dylan was prostrate on the floor, hysterical and unreachable.  I decided to copy him, thinking Dylan was more likely to let me help him if I got alongside him. This proved instructive.  Not only did I find that this was indeed a way of reaching Dylan at a moment of crisis, I also discovered that a shopping mall is a peculiarly unpleasant place if you experience it solely with your senses. Once I had stopped thinking about whatever it was I was there to buy, and let myself simply experience the place with my body, I realised how confusing and distressing Meadowhall must be for Dylan.

Poetry and Parenting

Not only did this process help me to develop an imagined voice for Dylan, I think it helped me to care for him with more confidence and respect. Once I had lived alongside Dylan in this way I had a clearer view of why our non-autistic world might often seem strange and difficult and frightening to him. Parents caring for children with limited communication need to develop ways of understanding which help them to care and to advocate  positively and effectively. This will vary for different families but all parents, I think, need the skills of ethnographers in order to understand their autistic children’s interests and needs.

For me, my writing practice has been an important part of this ‘ethnographic parenting’. I don’t think I would have understood some things about Dylan without trying to write about them; certainly the poems I have written in Dylan’s imagined voice and the events I have described here make sense to me as ethnography. In this respect, my writing has influenced the way in which I’m a mother to an autistic child. However, being the mother of an autistic child has had just as powerful an influence on my writing and on the  poet I have become..

 

Reference:

Elizabeth Barrett (2005) ‘Dylan’s Cars’ in The Bat Detector, Wrecking Ball Press