On a visit to Tate Contemporary in Margate last summer I bought Dylan a badge in the Gallery shop. Reproduced from a Tracey Emin piece, the “I said No” slogan appeared custom made for Dylan. That holiday Dylan’s constant no-saying was beginning to wear me down. I fastened it to Dylan’s t-shirt that day hoping it would help me to a better humour.
Dylan doesn’t have many words but “No” is a word he uses with confidence. I don’t think it was the first word Dylan ever spoke but, because he has so few clear words, it can sometimes feel like the only one. There is something monumental about first words; indeed, they can become monuments. Soon after Dylan was born my mum reminded me of the baby books in which she and my dad had recorded my developmental milestones. Was I planning to keep such a book for Dylan she asked? With my new-kindled interest in baby behaviour I asked if I could see my own baby book. I was so surprised by what I found there I wrote the following poem (while Dylan was still a baby and before he was diagnosed autistic).
for Dylan Ariel
I am waiting for you to speak
as you sprawl, staring at the wooden gull above my bed.
I tilt my head in your face, try my smile
and imagine you mouthing ‘wing’, ‘bird’, ‘fly’.
You draw your knees into a silent curl
then haul yourself to stand against the trembling wall,
throb your tongue against your lips and stumble on the rush of air.
I was you to speak my name, or claim your own, clear and full.
I remember finding my first word:
smoky cellophane crackled in my fingers as I unwrapped
the pages of a pink quilt book to discover father’s insect letters –
my ‘first smile’, ‘first steps’, creeping along their dotted lines.
And there I knew my whole life through a single word: ‘Gone’.
Could my world, my all-gone world, have started there?
What did I know, in such few months, to name this loss?
I pull you to me, hold you tight, chant these words in your ear:
‘Here’, ‘Now’, ‘Yes’.
It’s ironic, I think, that the poem ends with a wish that one of my son’s first words is ‘Yes’, given Dylan’s later use of the word ‘No’. However, words aren’t always what they seem. When I discovered that the first word I had ever spoken was ‘Gone’ I asked some colleagues who specialise in child development what they made of it. I had been aghast at the discovery of my first word. What had my parents been doing I wondered? Why was it not ‘teddy’ or ‘milk’? I remember being reassured by the explanation that at around nine months babies start to develop an understanding of ‘object permanence’ which is the knowledge that something continues to exist even when we can’t see it. This is the stage when a baby moves from being absolutely distraught when a parent leaves the room (because they don’t realise they will return) to accepting this more easily because they know that the parent continues to exist somewhere else in the house. So perhaps I was exploring the concept of object permanence when I spoke that word ‘Gone’?
What might Dylan be exploring with “No”? I haven’t been unduly concerned about Dylan’s use of the word “No”; he doesn’t use it in a punitive way to indicate reprimand, nor is he repeating language that he hears (I probably have to say “No” to Dylan less than I would to a ‘regular’ teenager). But why does he say it so often? One of the things I enjoy about keeping a blog is the way it encourages me to reflect on my relationship with Dylan – each post I’ve written has required me to think more closely about something in order to describe it. After writing about communicating with Dylan in my previous post I decided to keep a log of Dylan’s speech. I wasn’t sure what I’d find, but I was pretty certain that the word “No” would feature strongly.
So last Sunday I wrote down everything Dylan said from 9am when he got up until around 1.30pm. I didn’t include vocalisations (his noises and babbles) but only what I considered to be attempts to communicate using language. I tried not to change my behaviour at all; I spoke to Dylan and tried to initiate verbal responses from him in the same way as I normally would, but not more often. In fact, there was probably less speech than usual during the time I was keeping the log because for an hour and a half we were at the Cinema.
Before I present the data from this ‘speech-shadowing’ I should perhaps say a little more about Dylan’s speech. As I’ve described in a previous post, Dylan is classed as ‘non-verbal’ in that he has very few recognisable words and no functional language. “No” isn’t the only word Dylan says. From around eight years old he has been attempting to verbalise and has developed a system of words and sounds which people who know him can recognise. However quite a lot of his speech is indistinct. As well as the difficulty with communication resulting from his autism Dylan appears to have difficulty with the mechanics of speech. He often omits one of the syllables in a two syllable word (‘dinosaur’ is ‘saur’ for example) and certain consonants seem to be difficult for him. Quite a lot of words appear and then disappear. Some are brought back into circulation at a later date. Although Dylan’s core vocabulary bears little resemblance to that of a three year old (his words include ‘shave’ and ‘nettle’) in terms of number, clarity and reliability of use, Dylan’s stage of vocabulary development is probably akin to that of a toddler.
Log of Dylan’s speech: Sunday 15th September 2013
9.00-11.00: at home, preparing to go out for a cinema trip
- morn [morning] prompted response to my greeting
- shtum [soap] unprompted comment
- loo [loo] repeating overheard speech
- dra-he [dressing gown] commenting on what I am wearing
- ca-he [candle] showing me a picture in his book
- ow [ow] touching the candle flame in his book (copying an action I’ve modelled previously)
- hair [hair] asking for this to be washed
- d-y-l-a-n [ n-a-l-y-d ] pointing to letters on his door but not matching sound to letter correctly (reversed)
- de-ya [ Dylan] saying his own name after touching letters
- cin [cinema] checking that we will still be doing this (pointing to bag as object of reference)
- at one [that one] response to a question (which t-shirt?) with accompanying point
- pu-pel [purple] echoing back my speech
- The Queen [The Queen] unprompted in response to thoughts (no external prompt). Repeated.
- oink oink [pig noises] unprompted response to thoughts
- um-pi [Grumpy] response to thoughts (from Snow White)
- at one [that one] response to a question (which hat) with accompanying physical selection
- shoe [shoe] telling me he has it on, needs it fastened
11.00-1.30 journey to and from cinema, with 1.5 hour screening
- ding-a-ling [bell noise] unprompted response to thoughts (about his Chinese exercise bells). Repeated.
- woof woof [dog noise] unprompted response to thoughts (no dogs to be seen)
- shoe [shoe] unprompted repetition/memory (no function – doesn’t need anything)
- er – sy [Earthsea] unprompted reference to a favourite film
- ding-a-ling [bell noise] frequent unprompted response to thoughts
- moo [moon] Passing Premier Inn (logo)
- ni – ni [ night- night] response to my conversation about having stayed overnight at a Premier Inn.
- no [no] pointing at a cinema which we often go to but saying ‘no’ to indicate we are not going there today.
- ger-wa [snow white] unprompted response to thoughts
- no [no] checking directions – i.e. we are not going that way
- a man [ a man] unprompted commenting (statue of Vulcan on the town hall). Repetitions.
- ke [ quiet] anticipation of my language – when told in cinema about noise-making names target behaviour
- laughs [laughs] appropriate laughter (at film), copying mine
- no [no] to confirm that he can’t eat my banana
- ba-loo [balloon] commenting on sequence in the film (accompanying point)
- a man [ a man] unprompted comment on the Vulcan statue as it comes into view when we leave the cinema
- no [no] checking route by disqualification (i.e. we are not going to stay in town)
- hurray [hurray] repeating a word in my narrative summary of the film we have just seen (‘hurray for crop-duster’)
- no [no] checking route by disqualification
- big eyes [big eyes] unprompted commenting on his picture book (candle’s eyes I think)
- po-tay [potato ] unprompted commenting on his picture book (actually Beast’s nose)
As a parent I found it fascinating to record Dylan’s speech in this way. Even without a background in language development I think it’s possible to make some useful observations from the data. Firstly, that’s quite a long list of words (or attempts at words) for someone who is ‘non-verbal’. From the speech record it seems that Dylan doesn’t say “No” as much as I thought he did. When he does say it, it’s nearly always in order to clarify which route we are taking or what we are doing . So he is saying “No” in order to establish “so we are not going that way today then?” or “aren’t we going to the Showroom Cinema like we usually do?”. For Dylan, “No” seems to be more of a question: “No?” Now I think about it, Dylan doesn’t do intonation in his voice, so his “No” would never modulate upwards to “No?”. So, all this time he has been asking me a question – and as that is an interactive process, inviting a response, I should be glad of his communicative intent (I am).
I have been aware that Dylan spends a lot of time figuring out what we are doing by elimination. When I’m driving I watch him in my rear view mirror; he pays close attention to the route, looking down the turnings we are not taking and sometimes, when I drive past a junction I might have chosen, saying “No” – or rather “No?” Much of Dylan’s life must be spent like a detective, piecing things together with clues and arriving at the answer through elimination. A lot of the time he must have something in his head that he’d quite like to do (that it would be nice to call at a pub for a drink, for example); quite often I intuit this, but I can see that when I don’t it is perfectly reasonable for Dylan to say something. Having done this speech collection exercise, I suspect that this is the function of Dylan’s “No?”.
As it happens I have been trying to address the issue raised by Dylan’s “No” recently by developing an i-pad as a communication tool; this not only helps me to explain to Dylan where we are going but allows Dylan to choose sometimes (more on this in a future blog). So I think I was aware that this was an issue – what the speech collection exercise has done has confirmed this for me. It has also challenged some assumptions I had about Dylan’s communication. For example I now think he makes more attempts to speak than I realised; that he tries two syllable words more often than I thought; and that his difficulty with some consonants and sounds is more significant than I imagined. I can also see that some of his most verbal times are when he’s out and about (which he enjoys).
I have always known that Dylan has a rich interior life with thoughts, memories and imaginings, and the speech record confirms for me that he spends a lot of time, even when he is in company, thinking about his books, favourite characters from his films, and objects and memories he enjoys. In my previous post about communication I mentioned that the pointing gesture which I particularly rejoice in is the one which ‘shares the world’ with me and in the record of Dylan’s speech I can see this tendency as well, with him commenting on familiar landmarks such as the Vulcan statue on Town Hall and the balloons in the film. There is also evidence of imaginative play (pretend burning of his fingers on the candle flame in his book) and socially-appropriate behaviour (returning my greeting and showing awareness of appropriate behaviour in the cinema). The exercise, then, has illustrated to me what Dylan is already achieving, and is capable of, rather than any deficit.
Collecting this limited record of Dylan’s speech has given me a lot to think about. If I had a background in language development then presumably it could help me identify some targets for developing Dylan’s communication and plan some interventions. Isn’t this the sort of support which autistic children and adults should be receiving? Dylan had access to speech and language therapy while he was at school but I suspect the support was more often directed at groups of learners (and their class teachers) than at individuals. Surely it isn’t too much to ask that some resource is directed to support the communication of autistic adults beyond school? That resource does not have to be intensive but it does need to be specialised. Parents, carers and support workers can take on development work but we need professional advice so that our interventions are not just sensible but informed. As I pointed out in my previous post, support with speech and language therapy is essential if adults with restricted speech such as Dylan are to function with some independence in the community and live fulfilled lives.
Barrett, Elizabeth (1998) ‘Gone’ in Walking on Tiptoe, Staple First Editions