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)

14 thoughts on “Sensory-Based Interventions In Autism: developing ‘material literacy’

  1. As always, very interesting stuff, Liz. Especially the auditory/music therapy. I’ll be really interested in your next posts. Smiled at good ole Bob Marley.

    I know music has been proven to awaken parts of the mind that may have been dormant via age or injury or disease (Oliver Sacks has done some fabulous research. http://www.oliversacks.com/books/musicophilia/ ) but I haven’t researched music in development.

    Enjoyed! Christy

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    • Hi Christy – thanks for stopping by – glad you appreciated the Marley 🙂 I really like Oliver Sacks – am reading a book of his case histories at the moment – but wasn’t aware of his work on music. I’ll take a look. A musicologist friend of mine is convinced Dylan has perfect pitch and I am sure he hears ultrasound. I think it’s a rich area and am just starting to explore it more having started singing lessons myself (new year’s resolution!). I must be improving as Dylan isn’t clutching his ears quite so much when I practice 😉 Enjoy your week, x

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  2. Two poems to complement and compliment Liz…

    Representations of Autism ?
    1. Us

    When they had finished walking,
    Holme Wood about them, and closing,
    There was no other way to go,
    No place with redemption to offer.
    The man looked at his son, standing,
    Tall, round-shouldered, distant,
    White water at the beck’s edge,
    White water thrusting into grey
    And black, turning over, over
    In somersaults of October fury.
    Saw Loweswater capture it, head-on,
    And calmed by the wide lake,
    Drown deep in mirrors of larch.

    The son had this flat stone in his hand,
    Plucked from the flood,
    Yet lacked a name for this thing
    Hard and cold between fingers,
    Nails bitten to moons of nothing.
    A father’s dream exhaled its sigh,
    Exhausted. Always it died – years,
    Long days of watching, hours,
    So eager for word marvels.
    Tell Dad ,tell Dad how was it within
    That body, that round shoulder,
    That crooked joint of thumb .

    NO

    The son turned his feet on the beach,
    Salmon pools emptying, drying out,
    As rain washed quickly past
    To another valley, beyond the fell.
    Began to push boots deep
    Into a scrum of shingle as if,
    As if wishing to disappear, become
    Stone he could not eat ,nor skim,
    Define geology ,texture, colour,
    Shape; nor label water smells.
    Words wounded ,words lost,
    His thesaurus blank pages.

    2. Baked beans bread butter.

    Baked beans bread butter
    And chicken too roast
    I like I like even though
    I leave the munch of eating
    The skin and meat until
    My plates empty of food.

    Yes I did have music therapy
    This week with Pam and yes
    I played the drum and triangle
    Songs we sang together were
    Yesterday all my troubles seemed
    To go away I had a good day

    I had a good day and tomorrow
    I will have a good day and clean
    My room put my clothes
    In the washing machine
    Watch them go round and round

    No I dont want to sit with you
    Or do a puzzle. I want to be alone
    And watch TV What did I see
    What did I see I saw TV
    Now I cant hear you Where

    Are you Where are you
    I am here I am always here
    I have been here for 57 years
    How old are you Timothy
    I am 21 I am 21 I am 21
    I will be 21 until I die die

    You will see me soon Suitcases
    Not suitcases this time its lunch
    Lunch a walk along the riverside
    Did you see the gulls Feed the ducks
    Feed the ducks Break the bread
    Throw it throw it so Look look

    Give it to them thats it good
    Now its time to say goodbye
    Kiss goodbye kiss kiss
    Where are you Understand
    Here here here here here
    Always here here here here

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    • Michael these are wonderful poems – thank you so much for sharing. I love the voice (in both) – very hard I think to manage the (imagined?) autistic voice in poetry but you do it beautifully in the second piece – and I like the interweaving with the parent’s voice. The first poem is full of the most wonderful sensory detail. I love those bitten moons as well. I’ve written about Dylan throwing stones in water (Praisestones) and the image of Tim in your poem feels very familiar to me. I haven’t written about sensory issues in relation to Dylan but I’ve a couple of poems in the most recent issue of Magma about my synaesthesia 🙂 Lovely to hear from you Michael – thanks for reading.

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  3. Liz, just came across your blog and Dylan reminds me of so many of our patients with autism. We are an optometry office that works with a number of patients with autism. We primarily provide vision therapy and Interactive Metronome therapy for our patients, but we also work closely with occupational therapists, speech/language therapists, music therapists, riding therapists, and many other types of therapists. We have so many parents who don’t know WHICH interventions are most appropriate, and spend a lot of time reflecting on what they might have done differently. Every person with autism is unique, so there really is not a cookie cutter treatment for “autism”; to your point making parents vulnerable to investing in treatments that may or may not work. I just want to applaud your proactive approach to helping Dylan enjoy his life to the fullest.

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    • Hi there – thank you for your comment (which makes me hanker after living in Idaho!). I have never heard of Interactive Metronome Therapy – I would love to hear more. I can guess at what some of the principles might be (I keep a metronome on my piano so am thinking keeping time – body movement and pace perhaps?). Your practice sounds so creative and interesting – and very much along the sensory and therapeutic lines which Dylan seems to respond best to. Thank you for reading and for your encouragement 🙂

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  7. It seems to me again, when reading this, sometimes a person(therapist or not) follows the rules or the originating idea without understanding effects or the why it looks to be working. If my sensory system is out of whack, perhaps sound is too high pitched–hearing things out of range, heavy work input or squeezing can help to tone that effect down. Sometimes what is appearing to be needed is a symptom of another of them being out of whack. One overload spills out into another. I am grateful myself to be able to notice when any of them gets out of sorts and I can choose to attempt to take care of each one. The sound defenders are to some brains like adhd medication, a person isn’t learning anything during overload. For me, and my son, understanding the ahhhhhhh yes of turning off one malfunctioning/dysfunctional system allows us to notice other systems, other things, sometimes allowing peace and a life. Finding alternate ways to modify this, that also work to MUCH lesser degree came after being able to turn off, learning to adjust our own personal volume.

    Also what can happen for me using soundless items, it can disturb my vestibular system so that with a return to sound, I can’t walk and fall down. (sometimes if things are noisy, I also can’t hear my feet and I trip or I fall or can’t tell how close to things I am)

    Z liked to climb into small spaces too but for him this wasn’t the squeeze machine effect, the small darker spaces helped to give him the edges to himself that he could not feel nor notice himself. He liked flipping over the small kiddie pool or turtle sandbox lid and getting underneath it. I do it for both the space and the proprioceptive input using a big squishy man-type chair. I can curl up all on the cushion and shove me back into the corner of the chair.

    The holding type therapy for us was just another way to give him INPUT -proprioceptive and had nothing to do with bonding or trust (fluffy bunny poo poo). He would also cram his head against me as I did head massage and ear work with him. Hands were also good and more discreet as he got older. Not that I cared, but he began to do so. He could also learn better at school if he flopped onto the floor shoving his feet up against the wall. We tried using the headphones that cut off sound to give him only his teacher’s voice. His memory and attention dramatically increased with this.

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    • Hi Elisa – as always your observations are really helpful. Your comment ‘sometimes what is appearing to be needed is a symptom of another of them being out of whack’ reminds me of the complexity of this. It is detective work for me. Something I noticed when I was out with Dylan today, and which strikes a chord with your comment about ‘returning to sound’, is that he didn’t seem to have his usual awareness of himself in relation to others. I had to keep helping him to correct course so as not to bump into people; this is almost unheard for Dylan. I was really struck by it and now, having got home and read your comment, I’m wondering if it’s because he’s just recovering from an ‘episode’ – maybe the scrambled spatial awareness is part of his recovery. I think it’s hard for parents to follow intervention programmes; we embark on them as amateurs, very much in the dark about how to implement (much less evaluate) them. I suppose that’s why I wanted to write this series of posts – to show the pressure I felt to try different initiatives and how difficult it was to make sense of them…

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