Education-Based Intervention In Autism: Dylan’s home learning programme

Posted in Policy and Provision by Elizabeth

In a previous post I reflected on the pressure which parents can feel under to take action in the aftermath of an autism diagnosis; early intervention, we are told, can play a critical role in future outcomes. Following Dylan’s diagnosis 18 years ago I trialled a long list of therapies. These interventions, I suggested in my earlier post, could be categorised as sensory; dietary and medical; behavioural; and educational. This is the last in a series of posts reviewing these approaches in turn.

Orchestrating interventions

No single approach is sufficient in itself and I doubt there are any parents or professionals who focus exclusively on one of the four categories of intervention I identify above. The question, for most parents, is the balance between the categories and the way as caregivers and educators we orchestrate them. In my introductory post to this series I identified some of the factors which impact on our choice of therapy: the child; parental values; the available resources; and the ‘dominant discourse’ abut autism at the time. As well as influencing our adoption of individual therapies, these factors affect the way we combine them.

One hypothetical parent of a pre-school child, for example, may opt for a gluten and casein-free diet with sensory-based interventions such as weighted blankets, massage, music therapy and gross motor activities. Such a parent may adopt a non-directive approach, preferring not to use behaviourist interventions or to offer their child formal education. Another hypothetical parent, meanwhile, may focus on the re-shaping of behaviour through a programme of rewards and reinforcers based on behaviourist philosophy. Such an intervention would include educational input as behaviourist approaches are used to facilitate cognitive as well as social learning; the framework for the educational content, however, would be social.

The two hypothetical parents in the above examples are a bit stereotypical. While it is often the case that a family opting for a behaviourist programme will place less emphasis on sensory approaches it is possible to mix and match eclectically from the four categories. To a large extent this was the approach I took with Dylan. However, as my earlier posts in this series indicate, the different interventions map onto distinct sets of ideas so choosing a particular intervention also involves adopting a particular philosophy.

Why education?

The four categories of intervention activity are underpinned by philosophical ideas because they align with academic disciplines and thus with theory as well as practice. Sensory interventions, for example, draw on ideas from Occupational Therapy while behaviourism is based on theory from Psychology and dietary and medical interventions align with disciplinary fields such as biochemistry and neuroscience.

As an academic discipline as well as a field of practice, education offers activities underpinned by theories about learning and child development. Given my work as an educator, this was a comfortable place for me; the language and philosophy felt familiar even in the transformed landscape of an autism diagnosis. After half-hearted trials with other interventions, and an abandoned attempt at a behaviourist programme, education was therefore what I chose.

Parent and educator

Initially I proceeded by instinct, aware that my assumptions about teaching and learning could be a burden rather than an asset when working with Dylan: in order to become a better educator I had to do what I asked of my students and unlearn some of my beliefs about education. Although I tried to bracket my professional experience I did draw on some practices from the workplace such as systematic planning and recording. I probably didn’t realise at the time how useful this was but looking back I can see that the framework it provided was helpful for me as well as for Dylan.

It isn’t easy for a parent to take on the role of educator. The most significant challenge I faced was without doubt my ability to cope emotionally. The inevitable frustrations and setbacks can be hard when you are emotionally involved with the child. You cannot walk away from the situation at the end of a difficult day. It can be harder to evaluate learning objectively; sometimes I wore rose-coloured spectacles and sometimes dark lenses. Furthermore, the potential for confusion of role between mother and son, teacher and child, presents particular challenges in the context of autism.

It is perhaps not surprising that many parents prefer to employ people to work with their children – indeed, this is recommended by behaviourist programmes. This wasn’t an option for me however; finances didn’t stretch to employing assistants for Dylan. Besides, I argued to myself, I had the necessary skills as well as instinct.

Intervention by instinct

It was by instinct, however, that I developed what I called ‘video teaching’. I’m not sure whether it was original (probably not) but I came up with it one night, alone and restlessly awake, praying for a good idea by morning. Dylan would have been around four years old at this point and his love of video was already clear. The only time Dylan was still was watching Pingu, Postman Pat or Thomas the Tank Engine. He would sit on a cushion in front of the television, periodically flapping his hands or making an excited ‘shushing’ noise with a little tremble of his head. However often Dylan watched, he was always engaged; this, I thought to myself, was the focus I needed.

It was the late 1990s, before the introduction of digital technology. Fortunately I had access to recording equipment at work so one holiday I borrowed a large, heavy camera. With the help of my six year old step-daughter, husband and mum I made ‘home teaching videos’ for Dylan. These involved flash cards and objects in real life contexts. In one scene, for example, my mum held a fork and flashcard in her hand while saying: Fork Dylan. It’s a fork. F-O-R-K. Fork. Then she mimed eating with the fork. Having the flashcard and the object, and hearing the word pronounced repeatedly, was an attempt to engage Dylan as a visual as well as an aural learner. It also allowed for the possibility that although Dylan didn’t speak he might be able to read (this hasn’t turned out to be the case).

Dylan loved the videos; he would happily watch them through over and over, seeming to enjoy seeing familiar people and objects on the screen. I’m not sure how much Dylan learned from the videos – he almost certainly didn’t engage with the flashcards and at 20 still struggles to recognise some of the vocabulary – but I think they were worthwhile nonetheless. Video teaching taught me that a home learning programme is a good way of involving the wider family (my step-daughter had great fun making the videos). It also demonstrated to me that Dylan could focus if I developed materials which were engaging and in a format with which he was comfortable.

The home learning environment

As well as instinct I drew on approaches to working with autistic children which were current at the time. I used ‘start-finish’ baskets as advocated by TEACCH programmes, for example. Although I had rejected behaviourism for Dylan I borrowed the approach to pace and rhythm adopted by the PEACH programme; working in short bursts seemed appropriate for Dylan and chunking up the sessions provided me with a robust structure when planning. I also borrowed some instructional techniques and based Dylan’s work space on a mash-up of TEACCH and PEACH; eclectic, but so what if it worked?

At the time, my focus was very much on finding alternative ways of working with Dylan. I didn’t believe the child development manuals had anything to offer us and the school curriculum seemed irrelevant. As far as I was concerned, what I had to do with Dylan was utterly different to the approach I took with his neurotypical sister. When I worked with Dylan I felt as if I was somewhere otherly and without a map; I was, I thought, a cartographer.

Marking a student’s essay recently, however, I read something which gave me pause for thought. Aboucher and Desforges, my student informed me, describe a Home Learning Environment (HLE) as one that is made up of:

reading, library visits, playing with numbers and letters, playing with shapes, teaching nursery rhymes and singing.

I read the list of activities (which relate to any home learning rather than specialist provision) several times. What struck me is that it was a perfect description of my current life with Dylan; in the course of a week, we do all of these things. There is a sense in which time stands still, or moves slowly, when living with autism; at 20, Dylan is rehearsing many of the same skills he was at five. I fetched my crate of home education resources from the cellar and looked through them; the early intervention activities I did with Dylan fitted the Aboucher and Desforges’ framework well.

I probably didn’t do anything different with Dylan 16 years ago, in terms of focus, than an early years educator would do with any child. What was different, however, was the way in which Dylan engaged with the books, numbers, letters, shapes, nursery rhymes and singing. In a linked post I provide illustrations which, as well as demonstrating the role of a HLE in supporting an autistic child, offer practical ideas for parents within the categories identified by Aboucher and Desforges.

Hindsight standing still

If the activities I do with Dylan haven’t changed in the last 16 years happily I have; I can still enjoy that wonderful thing, hindsight, while standing still. And if I had my time again I would do some things differently; I would, for example, focus more on interventions based on OT (an earlier post describes activities I think particularly helpful). While I did fine motor work with Dylan (cutting, threading, shape sorting) I probably didn’t place enough emphasis on physical activity. There was only limited understanding, at the time, of sensory profiling; of the various developments in the last couple of decades I would say that our knowledge of sensory issues has made the most significant difference to the support we can offer our children.

In the introduction to this post I restated the four factors I believe drive decisions about intervention: the child, the parent, the available resources and the dominant discourse. A better understanding of Dylan’s needs when he was diagnosed might have led me to adopt a sensory-based approach to early intervention. While my choice of intervention may not have been sufficiently focused on the child, however, neither was it driven by prevailing discourses at the time; I rejected the use of behaviourist and dietary/medical interventions as a potential ‘cure’ for autism. While I’m not uncomfortable with my decision to focus on educational intervention following diagnosis, Dylan didn’t benefit from my HLE in the way I had hoped.

On reflection, the decision to focus on educational interventions was based on my needs not Dylan’s. While working intensively with Dylan developed my practice, Dylan didn’t acquire the skills I had intended. Early intervention, it turned out, would bring about changes in me, the parent, rather than in the child. In the years since, I have wondered if the transformation of parental attitudes and beliefs is the main value of such initiatives. This surely is invaluable? A child’s parents are his or her greatest resource and time invested in the relationship is, perhaps, the mother of all interventions.

Reference:

Desforges P. and Aboucher, A. (2003) The Impact of Parental Involvement, Parental Support and Family Education on Pupil Achievement and Adjustment: A Literature Review. Queen’s Printer: Exeter

Images:

The images in the post are examples of my early planning and recording, Dylan’s ‘work’ from the time and pages from his ‘red book’, a resource I developed to support the home education programme.

Thank you for supporting our blog in 2014

Best wishes for 2015

Liz and Dylan

🙂

5Sep2014

Autism And Deprivation Of Liberty: the ethics of food

Posted in Science and Magic by Elizabeth

Dylan is in week four of his low sugar diet; the charts I’ve been keeping show the ‘challenging behaviour’ has dramatically reduced but not disappeared. The incidents that have occurred, however, have been severe. Such observations make decision-making hard: if the behaviours had vanished I would be making a noise about sugar and if there’d been no change I would be celebrating with shortbread. But here, in the greyscale world, things are less clear cut.

I cannot rule sugar out yet; it may be that on the days there were incidents Dylan had eaten sugar without me realising. I am still learning about the sugar content of products and have made some mistakes. My daughter pointed out that the flavoured Volvic water I’d bought for Dylan, for example, had a high sugar content. I was outraged; the product is marketed and sold as water. I read the labels of even the most unlikely products now.

Deprivation Of Liberty

Clearly intervening in the diet of a 20 year old man raises ethical issues but, as I’ve noted previously, Dylan is capable of resisting dietary change; eating and drinking are activities which require Dylan’s consent at a basic level. Saying ‘No’ to Dylan’s request for certain foods, however, is Deprivation Of Liberty (DOL) and requires justification.

The first time I had to consider the implications of DOL was a year ago. Within a short time of Dylan starting at a day service after leaving school he had gained weight. I assumed this must be because he was less active than at school so I enrolled him in a gym. Collecting Dylan from his day service one evening, however, I found him clutching a handful of biscuits; it transpired that Dylan had access to a kitchen area and had been helping himself. As Dylan was an adult, I was told at a meeting to discuss my concerns, preventing him from doing this would be Deprivation Of Liberty.

Happily there was an outbreak of common sense; Dylan’s social worker confirmed that as his support plan included a reference to Dylan needing support to make healthy eating choices the day service should ensure he didn’t have free access to biscuits. Dylan’s adult schedule does, however, offer more opportunities for snacking than Dylan had previously. Whereas at school he had only a hot meal at lunchtime, Dylan’s timetable now includes a range of activities in the community which offer the possibility of a drink and snack. While this makes it harder to introduce the new diet it doesn’t alter the ethical dilemma; DOL requires as much justification for a single refusal as repeated denials.

Balance

In last week’s post I mentioned a paper on the rights of people with developmental disabilities. The paper is pertinent as it focuses on the moral and legal implications of exercising control over someone’s life by curtailing their choices. The sub-title of the paper – the rights of people with developmental disabilities to eat too many doughnuts and take a nap – makes clear that food is a key arena for such dilemmas.

‘Biscuitgate’ (as I came to think of it) illustrates the need to identify areas where support with choice is needed. Learning to exercise impulse-control in relation to food and drink is something which can be addressed as part of a personal development programme; if goals are established within a care plan then reducing sugary snacks becomes something which is enabling rather than a deprivation of liberty. A care worker shared an example of this with me recently. A young man she supports becomes ill, apparently, after eating high fat foods; unfortunately his favourite brand of Cornish Pasty makes him particularly poorly. Because this young man is able to understand the link between certain foods and feeling ill he is able to make a choice; although he mostly avoids the triggers, every so often he has a pasty.

While we respect a person’s right to get sick, the right to personal liberty needs to be balanced against the need to protect others if this involves violent or anti-social behaviour. Dylan’s behaviour has put him in physical danger, made him vulnerable in the community and injured those caring for him. The incidents have impacted on Dylan’s life in terms of support levels, his access to the community and his leisure activities. If such behaviour is a consequence of eating sugar, isn’t this ground for depriving Dylan of the liberty to consume it? Plenty of people, however, become anti-social after drinking and we don’t deny them the right to drink: why should I have the right to remove sugar from Dylan’s diet?

Assumed consent

The crux of the issue, I would argue, is capacity. While someone choosing to drink alcohol is aware of the possible negative as well as positive consequences of their actions, Dylan does not link his consumption of sugar with feeling angry. This is hardly surprising: I spent two months puzzling over the change in Dylan’s behaviour and only by chance stumbled on the potential link with sugar. The link is not intuitive partly because of the disconnect between the activity (eating sugar) and the behaviour (aggression). Even if I were to try and explain this in appropriate language (‘shortbread make Dylan cross and sad’) Dylan’s understanding of consequences is present-time; he knows that if he puts his hand in the candle flame it will burn but he doesn’t yet grasp cause and effect over time. As far as Dylan is concerned, ‘shortbread make Dylan happy and smiley’.

If Dylan is unable to make an informed choice, and if not making the choice puts Dylan or others at risk, I would argue that exercising control over Dylan’s diet does not deprive Dylan of liberty but rather ensures his safety and dignity. This does not, however, eliminate the need for consent; even though I have taken the decision on Dylan’s behalf I need his consent for it. But how?

The measures I am using are ‘soft’ observations of Dylan which include:

He seems to be enjoying his meals
He appears to be enjoying new practices (jugs of iced water for example)
He has introduced new routines (counting strawberries while preparing his pudding)
He has tried new foods
He hasn’t ‘asked’ for sugary products in the community or when visiting

These observations give the impression that Dylan is not only not hankering after sugar but is enjoying his new diet. Whatever the eventual verdict on the sugar trial, realising that Dylan is amenable to change and can be supported to make healthier choices in relation to food is a positive outcome. If it turns out that sugar is not implicated in Dylan’s behaviours then it can be reintroduced more healthily. Sometimes it can take a crisis to trigger modest change; making a molehill out of a mountain can be good.

Medical evidence

I’m not yet certain that Dylan’s aggressive behaviour is linked to his sugar consumption but have decided to continue with the diet at least for the moment. Such a common sense intervention may be OK as part of a trial but to justify it longer term I need more information; my charts are useful as far as they go but I want something clearer than greyscale.

Last week I asked the GP whether it would be possible to check for sugar-related issues by urine sample. Although not as good as a blood test it will, apparently, provide some information. Dylan had not given a urine sample before; not only would I have to deal with the issue of consent but with fundamental explanation. I spent days working on this. I played charades with the diamond-shaped pot the GP provided then left it in the bathroom. When it remained untouched I offered more active encouragement at bath time. Eventually, on the fifth day: success. It occurred to me, during this process, that from Dylan’s perspective it must seem quite bizarre: after years of telling him to pee in the toilet suddenly I ask him to pee in a pot. I watched Dylan out of the corner of my eye as I decanted the sample into a specimen tube; there was a definite ‘she’s gone crazy’ look in his eye.

Later in the week I watched a documentary about London Zoo. Using classic Pavlovian methods the keepers were training some animals to accept basic medical observations. I watched fascinated as a gorilla, in exchange for a favourite food, allowed his keeper to listen to his heart through a stethoscope, check his basic functions and administer a needle. The gorilla was healthy but medical checks had been built into his care routine as a safeguard for the day when he might need them. What staff didn’t want, a keeper explained, was to have to have to use aggressive intervention with a sick animal; they preferred to build a partnership between animal and keeper based on trust (and fruit).

As I’ve suggested before in relation to medical procedures, if you are parenting a child who has a significant developmental disability then it’s probably a good idea to introduce a clinical environment as early as possible. When Dylan was young I was relieved that he was physically healthy and didn’t need to access medical services; now I wish I’d had more reason to take him. In an earlier post I reflected on the use of behaviourist strategies with autistic children; although generally uncomfortable with food rewards I noted that I had found them useful for specific tasks. Watching the zoo documentary I added ‘acceptance of medical procedures’ to my mental list. If I had my time again I would happily exchange sweets for blood and urine.

Celebrating quietly

I gave Dylan a limited explanation about why I wanted him to pee in a pot and was careful not to talk about consequences. If something did show up in the tests, I thought to myself, it would raise a set of challenges which we didn’t need to face yet. Given Dylan’s resistance to medical treatment, saying ‘medicine’ at this stage would, I was sure, remove any possibility of getting a sample. I would deal with the consequences later. I’m not sure how useful the tests will be but I’m hoping they will at least inform a decision about Dylan’s diet. And even if they don’t, it feels good to have achieved another first: a urine sample may not sound like a big deal but for me it’s worthy of quiet celebration.

Reference:

Bannerman, J.D., Sheldon, J.B., Sherman, J.A. and Harchik, A. E. (1990) ‘Balancing The Right To Habilitation With The Right To Personal Liberties: The Rights Of People With Developmental Disabilities To Eat Too Many Doughnuts And Take A Nap’ in Journal of Applied Behaviour Analysis, Vol 23, No. 1, 79-89.

Images:

All photographs taken by Liz

UPDATE: The urine sample was clear. ‘No action required’. While I’m glad Dylan doesn’t need further investigations or treatment, part of me hoped for a clue to the changes in Dylan’s behaviour. The search continues…

14Jul2014

Behavioural Interventions In Autism: holding the middle ground

Posted in Policy and Provision by Elizabeth

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.

Pavlov

B.F. Skinner

Vygotsky

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

My 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

I 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.

On 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.

In 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

In 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.