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.
As 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.
Dylan 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
The 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).
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’
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.
I’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.
Schools 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).
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)
Living with Autism 