Although my 19 year old son is ‘non-verbal’ he takes an interest in a range of language-based activities. In describing Dylan as non-verbal I wouldn’t want to give the impression that he is silent; on the contrary he is very vocal. Few autistic people are completely ‘non-verbal’; most children and adults have some recognisable sounds which they use to communicate even if they tend not to use speech. It has been suggested that ‘restricted-verbal’ is a more accurate description than non-verbal. I’d say that’s a fair description of Dylan’s relationship with speech at the moment; he has a range of creative strategies which he uses pretty effectively in order to meet his needs and he enriches these with some limited verbal communication.
Any parent who has observed their child developing language will have witnessed the role of clapping, turn-taking, repetition, chanting and rhyme in the development of speech. As a poet, also, I know the power of language and the way in which these patterns can charm themselves into the brain. We know that these are really helpful linguistic resources to offer babies and toddlers in the ‘pre-verbal’ stage so I’m not really surprised that the things which seem to trigger Dylan’s attempts at speech are picture books and songs with rhythm and rhyme.
Dylan’s current vocalisations include include ‘songs’ and calls, onomatopoeic sounds and a range of repetitions and habitual noises which are not unlike a baby’s babble. He left school last summer and at the moment I’m looking for an adult education placement so that specialist staff can continue to support Dylan to develop his communication. Last week a ‘man from the council’ came with me to visit a potential provider. During the drive I explained to him why it was important that Dylan continued to access this sort of provision. My son, I pointed out, was showing signs that he was becoming more language-aware. The developmental delay associated with Dylan’s learning disability and autism was significant but he was making progress and I was convinced he had potential for more. “If you look into his eyes” I said to the man from the council, “you can see how alert he is …
A memory. It is the Easter following Dylan’s birth and on the first warm day of the year I have driven to Charleston House on the Sussex coast . Dylan is just over a month old and dressed in a blue striped suit and sun hat. I am sitting in the gardens with the baby beside me in the grass. Two sensibly-dressed middle-aged women walk past and glance at Dylan: “what an alert baby you have”, one of them exclaims, “you must talk to him a lot?”
Two years later, when Dylan was assessed for autism, I thought about the women at Charleston House. Perhaps the memory helped me to deny there was an issue with Dylan’s language development (even if I acknowledged his autistic behaviours). I thought my clever toddler was having a laugh. I remember one night whispering to him: “come on Dylan – I know you can talk – just one or two words – that’s all – just something to show you can.” I was scared we were on an elevator that we wouldn’t get off; that Dylan would receive a forever label.
As it turned out the professionals involved in Dylan’s care were not keen on labels. They weren’t useful, I was told, unless they helped to access resources. So without any assumptions about Dylan’s language development (though with an ‘it looks like autism’ verdict) we joined early intervention groups with other families whose children were causing concern. I had given up on Penelope Leach’s ‘From Birth to Five’ at some point during Dylan’s first 18 months. The baby milestones she described seemed less and less relevant to Dylan and increasingly unhelpful. So when I discovered a network of parents accessing children’s services, they became my new reference point.
Parents of children undergoing assessments for development delay compare their children with others in the same way that parents of ‘neurotypical’ children make comparisons at play dates. This can be comforting, at least temporarily, as it helps establish a new norm; saying or hearing the words ‘oh my child doesn’t either’ makes your child part of a group and this sense of belonging, and of similarity instead of difference, is helpful. However, just as there can be peer-generated pressures among parents of mainstream children – whether a child can draw a recognisable human being by a certain age, count to 20 or write her own name for example – so there can be peer-generated pressures among parents of children with special needs.
Because these pressures almost always arise from a perception that access to resources are performance-driven and limited, they tend to create stress. On the run-up to Dylan reaching school age, I felt under pressure from a commonly-shared belief among parents (corroborated by some professionals at the time) that in order to secure a place at the sought-after local specialist school, Dylan had to be out of nappies and talking before he was five. Also difficult was the wisdom circulating that: ‘if your child isn’t talking by five he probably never will.’
Having established a ‘new norm’ it was hard to watch as other children who had appeared similar to Dylan became verbal and made progress in leaps and bounds. But these developmental surges also gave me hope; if another child could undergo such apparent transformation, then so could mine. In time, however, I realised that Dylan had his own trajectory; he made progress, but it tended to be slower than other children. Dylan’s learning disability was far more significant than I’d imagined initially and, it transpired, his ‘communication impairment’ was severe.
Dylan was not talking by 5 years old and at 19 is still classed as ‘non-verbal’. Although everyone with an autism diagnosis experiences difficulty with communication to some degree, the gap between the non-verbal and highly verbal adult can create a sense of it being a very wide spectrum indeed. Recently I was part of a small lobby group which met with Nick Clegg (my constituency MP) to discuss adult services for autistic people in my area. In order to raise awareness of the spectrum nature of autism the group included myself (as a representative of someone who also has a learning disability and is ‘non-verbal’) and an able and articulate autistic woman. After the meeting I was chatting about Dylan and must have used language sloppily as, at some point, she quite rightly interrupted to remind me that while Dylan might not be verbal, it didn’t mean that he couldn’t communicate: “Someone with autism is communicating every time they get angry”, she told me.
Dylan doesn’t often get angry but he does sometimes get frustrated. I think that this frustration is frequently at his failure to make himself understood – some of Dylan’s behaviour (such as standing jumps) is Dylan trying to communicate that communication isn’t working. When communication between us does work it is often based on me intuiting what Dylan feels, needs or wants from his actions. At a very basic level Dylan uses ‘motoric communication’. This means that he uses my body as an extension of his own. Dylan is adept at leading (or, if I am resisting, pushing and pulling) me to where he wants to be, or to show me what he wants. This usually involves him manipulating my right arm, but sometimes he uses my finger to indicate what he wants or to show me the help he needs. This is a mode of communication which Dylan has been using since he was a toddler and which I try to discourage now he is physically much stronger than me and capable of more sophisticated strategies.
Communicating with me through representations of an action, rather than through the action itself, is one such strategy. Dylan can recognise and use photographic and representational images to communicate and is confident with rebus symbols, picture exchange systems, visual timetables and increasingly with communication software. Of course pictures are not always available but Dylan is good at improvising through ‘objects of reference’. If Dylan wants to walk he might bring his coat or shoes, for example, and he uses a particular backpack to request information about the daily schedule. As well as actions, pictures and objects, Dylan sometimes uses gesture to communicate. Although he doesn’t sign, Dylan increasingly gesticulates with his hands and even at times shapes a point. There are different kinds of point; an ‘indicative point’ might be used in response to a question (‘Dylan which T-Shirt do you want to wear?) while a ‘declarative point’ is more of a statement than a response and important in that it can initiate communication. The point I am most interested in, however, is one which ‘shares the world’ with me; if Dylan points in order to show me something (a duck for example) then this is a high point of my day indeed.
A memory. It is a winter morning and I am loading Dylan into the baby seat in the back of my car. He is around 20 months old. My new partner is hovering on the pavement to wave us off. I get into the driver’s seat and turn round to Dylan: “Look” I say pointing at the face in Dylan’s window, “wave bye bye”. Dylan looks blank. His arm lies limply in his lap, then he half-lifts it in a sloppy arc. I think to myself it is hardly even a wave…
I had noticed something important that morning. Within a few weeks of this memory, Dylan had lost his non-verbal communication completely and it would be many years before I saw him wave again. However, I remembered Dylan’s earlier use of gesture and had clear memories of him sitting on my lap pointing to things in his picture books and waving goodbye to people. Only very recently have these gestures started to return. Dylan’s new wave is fast and flappy but he uses it appropriately and knows what it means, and his indicative point – with a flamboyant final flourish – is increasingly reliable. He has also developed some gestures which are all his own; three taps on his chest or mine means ‘I love you’ for example…
Tapping three times on your chest is an action Dylan has based on a gesture I make when reading the last page of Waddell’s ‘Owl Babies’. In the story the mother owl returns after a night’s hunting to her three owlets and the smallest, ‘little Bill’, jumps up and down on his branch declaring: “I love my mummy”. Rather than bounce up and down while reading to Dylan, I developed the action of three taps on his chest and over the years Dylan has copied this gesture.
Increasingly I see in Dylan an awareness of his own limitations and difficulties. When he was younger I thought I saw this in his more able peers but felt that Dylan was to a large extent free of self-awareness and therefore of any sense of difference or failure. Recently, as Dylan has made more attempts to communicate, I have noticed how disheartened and anxious he can become if I don’t understand him or respond positively. If he attempts a word I don’t recognise, for example, and I ask him to say it again, he will often retreat to a quite different but familiar word – usually ‘The Queen’ (as in Snow White). Given the lack of clarity in Dylan’s speech and the individual nature of some of his gestures (such as tapping three times), establishing a system of communication with which Dylan can be understood in the community as well as (with luck and patience) the home, is surely worthwhile.
Any limitation on the effectiveness of Dylan’s communication probably has more to do with our inability to understand than with Dylan’s intent to communicate. Clearly, however, it would be ‘a good thing’ if Dylan could be helped to develop more speech as that would give him some independence in the community and increase his potential effectiveness as a member of society. I don’t know whether Dylan’s increasing interest in language will continue or not, but – as I explained to the ‘man from the council’ – I’m fairly certain there are things we could and should be doing to help. In England the policy on funding educational support for post-19 adults is in flux but the new 0-25 SEN code could potentially offer such an opportunity.