At-Ankle Support

wp_20170205_013As I’ve mentioned previously, Dylan has a tendency to jump. When I say jump I really mean bounce. Or perhaps pogo is a more accurate description. Because Dylan’s jumping seems not to be to touch the sky (as Higashida explains this behaviour in The Reason I Jump) but to relieve extreme anxiety. There are happy exceptions, but Dylan’s jumping is mostly a sign that something in his world has gone wrong.

I’ve always been a little bit scared of Dylan’s jumping. It doesn’t sound threatening, I know. Jump.  Quite Innocuous really –  fun and friendly, even. But when someone is pounding up and down, over and over, higher and higher, bending at the knees to increase height and acceleration – well, in a restricted indoor space it is intimidating and outdoors, in a high risk environment, it can be terrifying (I will never forget a cliff top episode that nearly ended in tragedy).

Dylan’s jumping has been less of a concern since he moved to a specialised setting where his anxieties have reduced. When he needs to jump he has staff to support him and a safe environment. The rooms at the residential setting are larger than an average home environment and there is space for Dylan to jump in order to manage his anxiety. Because, as Dylan’s Behaviour Support Coordinator stresses, the behaviour is functional for Dylan; if his anxiety escalates then the sensory experience of rhythmic leaping into the air is something which Dylan seems to find helpful.

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wp_20170205_014But last week there was an accident; Dylan jumped so hard that he either landed awkwardly on his ankle or caught it on furniture. When I received an email to say that Dylan had hurt his ankle while  jumping I wasn’t surprised in the sense that a jumping-related incident has been an accident waiting to happen for years. I was a bit alarmed, however, by the severity of the injury and the implications for Dylan. It took several phone calls and emails to reassure me that I didn’t need to go rushing to the home to see Dylan myself; there was nothing I could do that wasn’t already being done to support him. And although the photograph of Dylan’s ankle was a bit of a shock, it was helpful .

We have become so used to exchanging images by email it’s easy to forget that this is still a recent development; a few years ago I would have had to drive to Dylan’s care home to see the situation for myself. Without doubt, new technologies are helpful in supporting communication between a residential setting and family home and thus in promoting an active partnership around care. Daily phone calls and email updates not only reassured me about Dylan’s injury, they enabled me to take an active part in discussions about how to support him with it.

Helping Dylan to manage pain and encourage healing is challenging as Dylan won’t take oral medicines and will tolerate only very limited interventions. Furthermore, Dylan is a very active young man who is constantly on-the-go. The ankle injury was therefore significant in that ‘resting it’ was not realistic; sitting quietly with his feet up was not something Dylan could understand or accept.  The doctor, however, advised that there were benefits to keeping an ankle moving after such an injury as some mobility promotes the healing process. It was really therefore a question of degree:  ice-skating on Friday would have to be cancelled but a brief walk around a favourite museum on Wednesday would be OK.

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wp_20170205_015Happily Dylan accepted the changes to his programme. He also tolerated the application of anaesthetic gel and a support bandage in the days after the injury. I think Dylan grasped some of the implications of his injury and perhaps even had a basic understanding of cause and effect in relation to the behaviour which had caused it. What I didn’t believe, however, was that this would be enough to prevent Dylan from jumping again. On the contrary, I suggested to staff, wasn’t it likely that Dylan would be more prone to jumping due to his frustration at the situation? As far as I was concerned, there was a real danger that Dylan would damage his already-weakened ankle by jumping on it. And even if he didn’t, I said to the care home manager, the incident had made me realise that we had to do something about Dylan’s jumping. I didn’t want this to happen again.

Although I was sorry that Dylan had to lose his fabulous first key worker recently, as E’s new role in the organisation is regional Behaviour Support Coordinator, Dylan still gets to benefit from her expertise. So when I asked for a review of Dylan’s jumping after the incident it was to E that Dylan was referred. The incident analysis which she conducted suggested patterns to Dylan’s jumping. This particular incident, for example, seems to have occurred when Dylan became frustrated about his swimming towel not being folded in a particular way. A newish member of staff wasn’t aware of the importance of this to Dylan who became frustrated at his inability to communicate how he wanted the towel folded. Tracking through Dylan’s records revealed other incidents when Dylan had become frustrated by a routine not being followed.

When Dylan chooses a jacket potato for lunch, for example, it is very important that two portions of butter are placed on the side of the plate (so he can put the butter on himself) rather than the potato being served with butter already added. Such details may seem minor to us but they can mean the difference between happiness and despair to Dylan. The thing is, E noted, she had got to know Dylan so well during her time as his key worker that she instinctively built Dylan’s routines into her care and modelled these to other staff with whom she was working.  Furthermore, members of staff who know Dylan well are familiar with the signs that he might be about to bounce and are often able to react in order to head off the jumping. There had, however, been a number of staff changes and some of this ‘craft knowledge’ of Dylan’s routines had been lost.

While Dylan’s basic care routines are recorded in his care plan there was perhaps a need, E suggested, to produce more detailed written guidance about Dylan’s context-specific routines. As the review of Dylan’s records had suggested that a significant number of Dylan’s jumping incidents happened around food choices, E suggested that Dylan’s communication book be enhanced so that he is more aware of what food options are likely to be available on a particular day. This might help Dylan to manage his expectations around meals, particularly in the community.

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wp_20170205_012Developing the details in Dylan’s care plan (for staff) and schedules (for Dylan) are strategies which focus on communication.   There is nothing surprising or new here; it has been clear from the beginning of bouncing that underneath the behaviour lies Dylan’s deep frustration at being unable to communicate his needs and desires. We rely so heavily on the spoken and written word to communicate that I imagine whatever we do and however much we try, we will never be able to take away Dylan’s frustration entirely.  As well as it being impossible to have pictures/symbols available for every eventuality (even digitally), Dylan’s significant intellectual disability means that he cannot always comprehend the nuance of communication through imagery.

Nonetheless, reviewing and developing the symbols we use with Dylan has to be worth our constant time and attention. E has some other ideas for communication which we hope will empower Dylan. She has suggested introducing a key ring system, for example, to promote independence.  Again, there is nothing radical about this  – I tried using a key ring with Dylan when he was around seven years old. But the point is to go at Dylan’s pace and to find methods with which he’s comfortable; some of the strategies I tried with Dylan as a child, without success, may be more effective now.

While some autistic children and adults are confident users of communication software, this hasn’t been something which has worked for Dylan so far. I suspect this is because of Dylan’s dual diagnosis of intellectual disability and autism, a combination which impacts significantly on communication and thus on Dylan’s life more generally.  As Dylan’s ankle injury demonstrates, this can affect physical health as well as emotional well-being.

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wp_20170205_011I’ve written previously about the importance of promoting positive contact with the health services for autistic children and adults with intellectual disability.  Happily, the annual ‘Cardiff Check’ seems to have borne fruit in that Dylan seems comfortable visiting doctor’s surgeries and hospitals, although he won’t tolerate much in the way of intervention.  Coincidentally, Dylan’s annual review was scheduled  last week so the GP was able to check his ankle during the appointment. It had been, the doctor suggested, ‘a very bad sprain’ but seemed to be healing nicely and he had no concerns.

My concerns that Dylan might damage his injured ankle by bouncing on it have, happily, not come to pass.  ‘I absolutely take your point about improving communication’, I had said to E after Dylan’s accident, ‘but what if Dylan does start to bounce? We need to be able to redirect him, at least while his ankle is injured’. E suggested that we encourage Dylan to make use of his exercise ball at such times; seated-bouncing on his ball, she explained, would deliver the rhythmic movement which Dylan appears to benefit from but the ball would take the impact of his weight rather than the floor. Staff could use a ‘Stop’ card with Dylan at the onset of bouncing and re-direct him to the exercise ball.  Longer term, the aim would be for Dylan to develop the habit of seated-bouncing rather than his standing leaps.

While Dylan’s ankle has been sore he has been happy to make more use of the exercise ball. Dylan uses such a ball as part of a morning exercise routine so it is a familiar piece of kit. Although this is not something which can be used outside the home, it feels positive as a strategy for promoting emotional self-regulation. The hope is that once Dylan has accepted re-direction to the exercise ball he will use it voluntarily, instead of jumping.  As he learns to manage his anxiety, staff will support Dylan to use other resources, such as his weighted blanket and a ‘sensory box’. This sensory approach makes sense to me; I bought an exercise ball for Dylan to use at home and I must confess to having bounced on it myself, one evening last week, after a particularly stressful day 🙂 As ever, there are self-care lessons to be learned from caring for Dylan.

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

education reflections 005In 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 education reflections 008caregivers 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 education reflections 009philosophy. 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?

education reflections 012The 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

education reflections 053It 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.

education reflections 057It 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

education reflections 062As 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?

education reflections 054At 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.

education reflections 028I 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.

education reflections 049I 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

education reflections 050If 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.

education reflections 055In 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

🙂

Sensory-Based Interventions In Autism: developing ‘material literacy’

This post is part of a series of reflections on the interventions I used with Dylan in the immediate aftermath of his autism diagnosis in 1996 at the age of two. The purpose of the reflections is to ask what difference early intervention made and what, with hindsight, I would do differently. In last week’s post I organised early intervention activity into the categories sensory, medical, dietary, behavioural and educational. This post focuses on sensory-based interventions.

The Seven Channels

Sensory integration is the process by which the brain organises and interprets information from our senses (hearing, touch, smell, taste and vision). In addition to the five senses there are two further processes which are part of sensory integration, proprioception which is an awareness of where our bodies are in space, and vestibular processing which is our sense of balance. The neurological difficulties which some autistic people have organising the information from these seven channels is described by the term Sensory Integration Dysfunction. The early interventions I used with Dylan were not particularly directed at smell, taste or vision but hearing and touch were a focus of some of the ‘treatments’.

Hearing: Clearing Out and Blocking Out

An intervention intended to address sensory dysfunction in relation to sound is Auditory Integration Training (AIT). This was popular in the 1990s following reports that it could promote speech in young children. I was skeptical but as it was non-invasive and appeared harmless I signed Dylan up. The treatment lasted half an hour every day for 10 days. During his time in the treatment room Dylan listened to audio tapes through headphones. The audio tapes, I was informed, were carefully compiled; over the period of the programme they would repair Dylan’s auditory channels. Dylan wasn’t yet talking, it was suggested, because of the disturbance in his auditory system which prevented him from distinguishing speech from the constant background noise he could hear. The music he listened to each day was designed to reduce this interfering noise and integrate his auditory world.

The sessions themselves were fairly pleasant; I chatted to the woman administering the AIT while Dylan crawled around the beanbags with headphones on. One day he crawled further than the cable would stretch from the amp to his headphones and they fell off. I was nearest to them so I reached to retrieve them and, curious, held them up to my ears to see what Dylan had been listening to. The woman wasn’t happy when I pointed out I had it in my vinyl collection and could play it to Dylan for free; the programme of music was carefully selected to combine frequency and pitch in a planned way, she explained.

Dylan didn’t start to talk as a result of Bob Marley and AIT nor did he show signs of any other particular benefit. However, another child in the group did start to vocalise during that ten day period and the mother believed (at the time) that this was a consequence of the AIT rather than coincidental maturation. While I don’t think AIT had any positive impact on Dylan it didn’t do him any harm. Music offers interesting possibilities for some autistic children who present with auditory disturbance (I explore the role of music in Dylan’s life here). AIT is an expensive programme, however, and does raise the issue of vulnerable parents investing in treatments for which there may be little scientific evidence.

We now know that auditory disturbance is common but in the 1990s sensory issues were only just being acknowledged. Over the years other responses to auditory disturbance have developed. While AIT aimed to ‘clear out’ auditory channels, some approaches are designed to ‘block out’ disturbing noise. When Dylan was older he encountered such methods; at one school he attended, for example, pupils were encouraged to use ear defenders (of the industrial variety) in order to reduce environmental noise. I was unhappy to discover that Dylan had been wearing these at school. This was not an approach I wanted to encourage; blocking out background noise also blocks out speech and language as well as a variety of auditory stimuli which I wanted Dylan to be exposed to in the context of an educational environment. I was also uncomfortable with the possibility that Dylan could become habituated to ear defenders and not able to function in the community without them.

London Lions 074As it happens, the trend for listening to iPods through ear buds has shifted to the use of Beats which are visually similar to industrial ear defenders. I have used both types of headphones with Dylan in order to support him in environments which he is likely to find stressful; this functional use of ear-wear I am perfectly comfortable with. I also take advantage of fashion to support Dylan’s sensory needs; for example I noticed these ear muffs in the men’s department recently so bought them for Dylan, comfortable with these in a way that I wasn’t happy with the B&Q ear defenders.

material literacy 012Dylan still presents with auditory discomfort. I’m not sure it is significantly improved but he does have better strategies for coping. Although I prefer the idea of interventions which could ‘clear out’ auditory disturbance, in practice I think ‘blocking out’ is the only plausible intervention currently. The question, then, is what parents and children consider to be acceptable methods of blocking sound and how to manage this.

Touch: Pressure and Control

early 006The current interest in weighted blankets is an example of a ‘treatment’ which is designed to provide the brain with space and touch data in order to improve proprioception. I’ve recently purchased some of these for Dylan though he doesn’t seem particularly interested in using them – possibly because even though I ordered the heaviest products on offer they are not really designed for an adult of Dylan’s size and weight. I can imagine them being comforting to young autistic children, however.

Weighted blankets adopt a similar sensory-based approach to that which underpinned some earlier interventions. When Dylan was young there was much interest in Temple Grandin’s ‘squeeze machine’. Grandin (autistic herself) observed anxiety levels in the livestock with which she worked and noticed they were significantly calmer when herding through an enclosed space. On the basis of this Grandin constructed a machine for her own use and reported its therapeutic effect on her at times of stress and sensory overload. Grandin’s machine could be understood as a precursor of the weighted blanket in that it was based on the principles of touch and proprioception.

I didn’t build Dylan a squeeze machine. However, over the years, there have a been a number of occasions when I’ve seen Dylan try to create his own squeeze machine. Once, on holiday in France, we thought that we had lost Dylan. I ran through the holiday cottage shouting his name and searching. Dylan was nowhere to be found, though we couldn’t imagine how he could have left the property. Imagine my shock when I checked one of the bedrooms again and caught sight of Dylan’s head peering out of the top of the wardrobe. We knew where to look for him later in the week at least (I was so amazed by this escapade I photographed Dylan in the act when he repeated it).

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Another method I trialled which involved touch was Holding Therapy. This was being used at the time in response to autistic meltdown in toddlers. Holding Therapy involved physically intervening with your child during a period of distress; you wrapped them in your arms and clasped them tightly to your body while they worked through their distress. You needed to be in a horizontal position on the floor for this, ideally without sharp or hard objects underneath or around you. The process could take anything from a few minutes to several hours (though I never lasted that long) and was physically and emotionally exhausting. The aim was to hold tight to your child until the point of ‘resolution’ when the rigidity and tension left their body and they made eye contact with you again.

This was a frightening process for both adult and child and on the couple of occasions I tried it with Dylan I found it very distressing. Holding Therapy made parent and child vulnerable to being physically hurt but more significant than this, for me, was the emotional damage it caused. It didn’t make me feel closer to Dylan nor did it help him to trust me; my view was that it had quite the opposite effect and I quickly abandoned my trial of Holding Therapy. Looking back on it now, with the benefit of current thinking about sensory integration, I can make sense of the therapy in relation to proprioception and touch. Where the therapy was ill-conceived, though, was that it was something that was done to the autistic child against their will; what the weighted products and Grandin’s squeeze machine do is give control to the autistic person.

Control is a particularly relevant concept, I think, in relation to early intervention in autism. We are not accustomed to giving children control over their lives. Involving children who need specialised and ongoing support (be it medical, environmental or educational) is something which we claim we do but, in practice, even older children are heavily guided by adults and professionals. Imagine, then, how difficult it must be for a ‘non-verbal’ autistic child with learning disabilities to assume any sort of control over their environment and treatment plan? For the very young autistic child, particularly one who is experiencing high levels of sensory dysfunction and who has limited communication strategies, the world must seem a very scary place. Such a child would typically not have much (if any) say in their ‘treatment’. As parents we tend to decide that we are going to ‘have a go’ at something, whether it be Auditory Integration Training, Holding Therapy or (as we shall see in a later post) behavioural conditioning. The young child may resist and protest (toddlers are good at this after all) but sometimes all the tears in the world cannot wrest control from the parents.

‘Material Literacy’

material literacy 005 When Dylan was first diagnosed I had some understanding of the role which clothing could play in addressing Dylan’s sensory needs. I bought him all-in-one undergarments as a toddler, realising that he enjoyed the sensation of being enclosed by fabric. I also realised how much Dylan enjoyed hooded garments in his early years and I would search for these for him (as I still do). These choices about clothing are simple adjustments to Dylan’s sensory experience, primarily in relation to the sensation of touch, which seem to make a significant difference to his comfort. Looking back I wonder whether quite a bit of Dylan’s distress as a toddler was linked to touch; it’s possible, for example, that disliking the physical sensation of wearing a nappy could explain some of his discomfort during those years.

material literacy 001I’ve recently been reading about babies who were given to the Foundling Hospital in London in the 18th century. The mothers left tokens of fabric at the hospital so that if, at some point in the future, they were in a position to return for their babies, they could be identified. These fabric tokens were used instead of letters because the women were illiterate. What the mothers demonstrated, however, was something which has been described as ‘material literacy’:

the mothers’ recourse to textiles as a vehicle for self-expression was not just a second-best substitute for writing. Theirs was a world where verbal literacy existed in conjunction with a kind of material literacy that is now much diminished; a world in which the use of certain objects to mark events, express allegiances and forge relationships was familiar and the meaning of those objects widely shared. (Styles, 2010, p. 70)

As I read this passage I thought of Dylan as well as of those women. And rather than think of ‘material literacy’ within a deficit framework I saw it as something to celebrate. Because of his heightened senses Dylan has a deep understanding of the material world; he knows how objects look and feel and how they smell and taste and sound. Dylan experiences the material world with an intensity which can sometimes cause discomfort but which is also a way of being literate and which therefore presents an opportunity.

Changing Discourses and Opportunities

In last week’s post I suggested that one of the factors which determines what interventions parents make with their autistic child is the ‘dominant discourse’ about autism at the time of treatment. There have been significant shifts in the discourse around sensory issues in autism since Dylan was diagnosed 18 years ago. We are now more aware and better at taking the lead from children when making adjustments to the sensory environment. Another factor I identified as influencing intervention was opportunity, and what we are perhaps less good at is providing opportunities for sensory integration.

material literacy 011Schools and care settings increasingly have sensory rooms which can be used therapeutically to support the development of skills such as ‘material literacy’. While this has enhanced the opportunities for sensory-based interventions with older autistic children it can be difficult for parents to access such resources, particularly during pre-school years. If I was starting out as a parent of a newly-diagnosed child I would certainly convert a room into a sensory space if I could; this is a long-term need and would represent a good investment. I would also focus on interventions such as music therapy and art therapy, both of which engage the senses.

Although it is not convention, at least in the UK, to offer occupational therapy to a child with autism, this is something I think could also be helpful. As well as enabling children to explore the physical world through their senses, occupational therapy can develop proprioception and vestibular processing. Activities which may be helpful for autistic children include rebound therapy (trampoline), climbing, yoga, movement and dance. Trust and collaborative games, balancing activities and adrenaline sports could also be used in the early years to develop a sense of self in relation to others. Anything involving spinning is great fun for the autistic child as well as a way of helping to address sensory integration dysfunction. If I had my time again I would also let Dylan spend as much time as possible in water (with or without dolphins).

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A number of other posts include reference to sensory issues; please search on ‘senses’ in the right hand menu.

Reference:

Styles, J. (2010) Threads of Feeling. The Foundling Museum, London (exhibition catalogue)