Dinosaurs Or Trampolines: hearing Dylan’s voice

happy sad 008Dylan doesn’t have much language and the speech he does use is mostly echolalic. For years Dylan repeated the last bit of my daily greeting ‘Good morning Dylan how are you?’ until the other day when, out of the blue, instead of ‘how you’ he said ‘OK’. It is thought that echolalia may have a functional role in speech development; perhaps the thousands of echoed replies were a rehearsal for the morning Dylan would have the confidence and understanding to answer.

For many autistic people open-ended questions are problematic; without a frame, forming an appropriate response can provoke anxiety. Close-ended questions help but even structured choice can pose difficulties for children and adults whose speech is echolalic.

Dylan which hoodie do you want to wear, this one [pointing to black] or that one [pointing to grey]?

‘at one

Dylan do you want to wear this one [now pointing to grey] or that one [now pointing at black]?

‘at one

Because I know that Dylan tends to identify the last thing he is offered I test the reliability of his choices. It is, of course, possible that Dylan genuinely prefers the last item; in this situation there is a happy coincidence between his echolalia and desire. At other times, however, what Dylan says is not necessarily what he means.

You don’t need to be autistic of course to select the last option presented; I once had a boss who appeared to only ever adopt the position put last in meetings. Those of us who had spotted this weakness would try to secure the final appointment in her diary before she was due to take a decision we wanted to influence. In another job, working for a research organisation, a manager disliked a questionnaire item I had designed asking survey respondents to select three items from a longer list. They would, she said, simply choose the first or last options; could I please re-design it so respondents had to consider all options before deciding.

A voice

Recently I’ve been asking myself how I can involve Dylan in decisions about his future in a way that allows him to express considered rather than echolalic choices. Although his communication and capacity are limited it is important to me to try and give Dylan a voice. This can, however, be tricky. During Dylan’s transition from school, for example, I involved Dylan in a planning meeting. Dylan’s teacher had designed an activity which asked him to express likes and dislikes by sorting rebus symbols onto ‘happy’ and ‘sad’ pages; the aim was that I would take account of these when writing Dylan’s support plan.

support planning 001The intention may have been good but it wasn’t particularly successful. Although Dylan joined us only for the end of the meeting it was still disruptive, taking him away from his usual schedule. As far as Dylan was concerned, I ought not to have even been in the school. The meeting was in a formal and unfamiliar room and although Dylan knew most of the people around the table it was stressful for him. I had brought juice and biscuits to make the situation more relaxed but this probably didn’t help as he focused on those rather than the activity. As Dylan half-heartedly sorted out the rebus symbols I realised that he probably didn’t know what he was doing there or why.

Later, when I put together Dylan’s support plan, I included the symbols but noted that they ‘contained some surprising choices’. I knew that it wasn’t the case that Dylan didn’t like DVDs for example. I was also fairly confident that he liked books and (with some provisos) music. I had involved Dylan in the process but perhaps not in a way which allowed him to participate meaningfully. If I were to offer Dylan choice again, I told myself, I needed to figure out how to give Dylan his voice, rather than a voice.

A choice

The transition from school was pretty awful for Dylan. Wrangles over funding and provision (which you can read about here) meant I was unable to prepare Dylan for what would happen next much less involve him in the process: with all the uncertainty I had no choices to offer him. Dylan struggles with change and feels loss deeply;  the impact on him of this badly-managed transition has been profound (I have reflected more on this here). Eighteen months later, changes in Dylan’s behaviour and support needs mean he is now being assessed for residential care.

It is impossible to know whether Dylan would still be the happy and stable young man he was at the end of his school years had he been provided with an appropriate placement on leaving education. What is certain, however, is that Dylan’s transition from school included none of the things which help him and many of the things which cause him distress. Leaving home will be the most significant transition Dylan has faced yet and I know he will need much better support this time. Explaining the process to Dylan will be crucial but it is also important that I find a meaningful way of offering Dylan choices about his future. If I am to do more than pay lip service to this I need to think hard about how Dylan can be involved in decisions.

Dinosaurs and Trampolines

happy sad 001Enabling Dylan to find his voice in the process will be complex. I’m not sure I’ve managed to find my own voice yet actually; I am still flailing around, trying different positions and hoping to arrive at one that feels comfortable. If this is such a difficult decision for me, how much harder will it be for Dylan, whose life it is?  In a previous post I described how, while making visits to settings prior to Dylan leaving school, I realised I’d been choosing for myself rather than for Dylan. Since then I’ve tried to remember that the things I prioritise will not be the same as Dylan. It is probably also the case that the things I find hard about the process are not the same as the things about it which Dylan will find difficult.

I realised recently that something which probably isn’t helpful is involving Dylan in visits to multiple settings; more than two places seems to overwhelm him and provoke an echolalic choice. Making an initial selection before offering a choice is therefore sensible and also rules out the possibility of Dylan selecting a setting which is unsuitable or unavailable. This week therefore I whittled potential providers down to two. I decided to get a sense of Dylan’s response to both settings (one of which he had visited previously) and to record this process. Because of the possibility of Dylan making an echolalic choice what I didn’t want to do was show him photos and ask whether he likes ‘this one or that one’; observations of Dylan while visiting the settings, I decided, would be of more value than him choosing between pictures following a visit.

To help with this I asked someone who knows Dylan to join us on visits to the two providers; not having to supervise and manage the visit alone would allow a closer focus on Dylan. I wasn’t surprised when Dylan homed in on things which weren’t on my list of priorities; he was delighted to discover that the setting he hadn’t visited before had a trampoline in the garden and he remembered, with delight, that the setting we were re-visiting had a Disney mural and Dinosaur DVD. Whatever the choice between the two settings hinged on for me, for Dylan it was dinosaurs and trampolines.

His Choice

happy sad 002Although I’d resolved not to offer Dylan a ‘this one, that one’ choice the prospectuses were side-by-side on my desk that evening. Dylan looked intently at both of them and hovered with his pointy finger before (unprompted) saying decisively: ‘at one. This seemed to be a considered choice – I’d watched his eyes flick between prospectuses before delivering his verdict – but I couldn’t help checking: ‘at one he said again, ‘at one.

I hadn’t presented the settings to Dylan as places he might live (or, to put it another way, as part of leaving home). I think that this is too abstract for Dylan to consider and wouldn’t be helpful. The choice Dylan made was therefore not ‘I would like to live there’ but ‘I like that place’. My idea is that, for Dylan, this is how we must proceed; first expressing an interest in a setting and only later introducing the idea of it as a potential home. This is the mirror-image of the usual decision-making process whereby someone would decide to leave home then look for somewhere to live.

There is a way to go yet but this week’s visits felt helpful. I have started making a book to record the process for Dylan; the idea is to not only involve him in decisions but to evidence this so that Dylan feels some ownership of the choices. This record of Dylan’s journey will, I hope, become part of his preparation for transition. I’ve chosen a physical artefact because Dylan likes books but a video diary would also work well. Whatever the format, recording rites of passage is an ancient practice which, for millennia, has been used by human beings to locate themselves in relation to each other and within a community. I hope that such an approach helps Dylan to make sense of, and a choice about, the next stage of his life.

Time

happy sad 009Something which I need in order to do this is time. During the summer the changes in Dylan’s behaviour were so dramatic that the situation presented as crisis; with challenging episodes daily, the priority was keeping me safe and ensuring Dylan had the level of support he needed. It is difficult to involve a young person when they are distressed and I visited providers in haste so that a quick decision could be made. It is only because Dylan is calmer at the moment that I have been able to delay making a decision while I try to involve him in the process.

My neighbour, who works in the sector, asked me yesterday how Dylan was doing. Oh he’s a bit more settled at the moment, I replied. I told him that on good days I doubted the need for Dylan to leave home. Don’t make that mistake, he advised. The most difficult transitions he had witnessed were those which happened in crisis: You want Dylan to move when he is well so that people get to know him at his best and can see his full potential. For the good of everyone the process should happen when Dylan seemed least in need he said.

I am hoping this period of calm continues long enough for me to hear Dylan’s voice. So much provision seems to be about crisis management that I suspect we don’t often achieve this. During our visits this week, though, I heard a heartening tale. Revisiting the house with the Disney mural I discovered there was actually no longer a vacancy. Apparently the young woman who had been expected to move would be staying after all. Her funding authority, which had planned to place her elsewhere, had offered her a choice; she had expressed a preference to remain where she was and the authority (a different one to ours) had respected her decision. Although I was disappointed that there wasn’t a place for Dylan the story gave me hope that, if I support Dylan to make choices now, one day in the future his view could tip the balance.

12 thoughts on “Dinosaurs Or Trampolines: hearing Dylan’s voice

  1. Goodness, Liz, what a quandary. You got me thinking of the decision process. Decisions about choosing one thing or another must include the consequences. There is not much consequence in wearing one shirt or another (although my wife might think differently about that one), but choosing a venue to live is another thing altogether. It is the aftermath of a decision that is so very hard to convey. Even when one makes a good choice, there may be certain things that are less than satisfactory. Many of us can take the bad with the good. It is difficult to say what is intolerable for another person, no matter who he or she is. How can one convey that a decision will change the future to one who only lives in the moment, or who expects an unaltered routine? Very, very difficult.
    I wish you and Dylan the very best in your quest and his.
    Jack

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    • Hi J – thanks for your very interesting comment. Yes I think you’re right – making a decision involves a consideration of the consequences. It’s on grounds that Dylan isn’t able to do this that I’m not letting him have sugar at the moment – he doesn’t realise the potential consequence of eating sugar so can’t make an informed decision about whether or not to eat it. It’s probably also the case that Dylan isn’t able to think through the consequences of selecting one setting rather than another – except I suppose in so far as ‘a consequence of living there is that I could bounce on a trampoline every day’. I know exactly what you mean about the aftermath – I think it is this that makes me most anxious, not the choice of setting in itself. Ah. I think that is it perhaps: I’m asking Dylan to make a choice rather than a decision. I’m responsible for the decision (whether D should live at home or not) and having taken this am giving him a choice about the detail (where to live). Thank you – you always make me think 🙂 Liz

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  2. Hello Liz, It is so hard to make decisions for other people when you don’t know what decisions to make for yourself. It seems you still have some doubts on the good days about Dylan moving, I think sometimes we fool ourselves into thinking everything will be okay. It sounds like you are going through the right processes not just for Dylan but just as importantly for yourself to know you have done all you can to give him a voice.

    It has been great to catch up with your blog.
    Tinc

    Like

    • Hi Tinc – good to hear from you – thanks for reading. You’re absolutely right; I do have reservations about Dylan moving. I think it’s because it is being triggered by changes in D’s behaviour; I have a nagging voice in my head which says it may be the last thing Dylan needs right now. It is hard, though, as I’m struggling to manage at times. It is very hard to make changes when everything is going swimmingly but recent weeks have made me think that actually this is far better; it is really hard to make decisions from a place of crisis and uncertainty. And it’s especially hard with D because of his lack of speech. Yes, it is easy to fool ourselves all will be well – and I am an eternal optimist 🙂 Thank you for your encouraging words – I really appreciate them, L

      Liked by 1 person

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