Autism And Transitions: supporting Dylan through change and loss

transition 002The Rule of Three

When I was training to be an English teacher my supervisor gave me a piece of advice:  focus on your classroom transitions he told me. Children and adolescents, the professor explained, don’t find it easy to move from one activity to another; they tend to get settled with one thing and then resist moving onto something else. Transitions within lessons, I was warned, are a flash point for disruption and managing them is key to an effective learning environment.

Prepare your class, I was told, by warning the pupils five minutes before that you intend to move them onto another activity. At the point of transition, name the activity which is ending and the one which is about to begin.  Five minutes later, reinforce the transition that has taken place by reminding pupils that one activity has ended and another has begun.

Years after I was given this advice I still draw on it even though I teach university students rather than school pupils now; my experience has confirmed its good sense and contribution to learning in all educational contexts. If mainstream students need this type of guidance, it’s no surprise that autistic children and adults require support with transitions.

The Rule of Half As Long Again

Dylan leaves school 014Many years ago, when I was grieving the loss of a lover, a girlfriend told me that it takes half as long again to get over a relationship. So if you’ve been in a relationship which lasted three years, for example, it’s likely to take you 18 months to fully recover.  Over the years I’ve applied this rule again and again and it has proved uncannily accurate. Perhaps because I am conscious of the  ‘rule of half as long again’ I make my healing happen to that time scale, but there have been times when I honestly haven’t been thinking about it and have suddenly realised that it has happened again. In 2009, for example, I woke up in a Paris hotel one February morning and remembered that it was the 5th anniversary of the end of my ten year marriage. Previously, this particular date in February had been a struggle each year as I saw the anniversary looming and rehearsed painful history and difficult feelings. That morning in Paris I realised that I hadn’t even noticed the anniversary; I was just getting on with my life.

I am so convinced by the rule that I apply it to all sorts of things. Quite often the calculation helps but sometimes, I admit, it can be sobering; there simply aren’t enough years left in my life for me to get over some of the things I’ve lost. I raise this rule  (a little playfully perhaps) in order to illustrate the impact of loss and change on our lives. It is said that life events such as divorce, moving house and changing job are the source of some of the highest levels of stress we are likely to experience. Each of these events, of course, represents a transition in that they all involve an ending and a beginning. Certainly I recognise in my own experience of relationships ending and of career and house moves, a period of grief, anxiety and sadness at what I have lost, as well as the anticipation of starting something new – and these are feelings I experience even when I’m looking forward to change. Is it any wonder, then, that Dylan should mourn for the loss of his school?

Dylan attended a National Autistic Society school between the ages of 11 and 19. He went to that school five days a week for eight years. He got on the school bus every morning at 8.15am and returned on it every day at 5pm.  That’s a lot of hours.  That’s a lot of time to spend getting to know every nook and cranny of a playground. That’s a lot of years to spend getting to know the way your teachers’ faces look and the sound of their voices and the rhythms of their classrooms.  That’s a lot of minutes to spend learning to be part of a group in assembly each day.  That’s a lot of seconds to spend getting to know a place so well you feel that you belong. That’s a lot of snow and sunshine and wind and rain and light for darkness and silence to fall, suddenly. Applying the rule of half as long again, I make that four years of Dylan grieving for that school. Starting now…

Objects of Reference

As a parent of an autistic child it can feel as if life is one long transition; as soon as one phase is negotiated I am looking ahead to the next, wondering what provision is available and how I can support my son to access it. The move from a school placement to adult services would, I knew, be the most challenging  transition Dylan had faced yet. I also knew that I’d need to actively support Dylan with transition from school because of his experience of leaving his respite (short break) provision the previous year.

transition 005Transition from school to adult education takes place at 19 whereas transition from children’s to adult services in the respite sector is 18. Dylan had been accessing a respite setting one night a week since he was at primary school and leaving the setting therefore represented a significant challenge for Dylan. Although the lack of alignment between the transition from education and respite care  is awkward, it could potentially ease the process by staggering change, allowing a young adult to manage a transition in respite care at 18 while in a familiar school placement, and then a transition from education at 19 once the new respite provision is established. Unfortunately it didn’t happen this way for Dylan; a four month gap in provision left him anxious about the break in routine and confused about why he could no longer go to the respite setting he loved.

Dylan leaves school 007When Dylan left the short break setting he was given a photo album record of his time there. Nearly two years later Dylan continues to look at the photos regularly. Recently he has started carrying it around with him and bringing it to show me photos and to ask me to talk to him about his time there. The album seems to be an important object of reference for Dylan; I think it represents a period of stability and Dylan looks at it at times of confusion to comfort and reassure.

Because of the lack of support for transition from respite I paid extra attention to preparations for Dylan as the end of his time at school approached. Unfortunately, in spite of years of researching and lobbying for Dylan, the experience of transition from school turned out to be  worse than from respite; four months after he left school Dylan still does not have a full time adult placement. In the absence of any plan for when he left school, Dylan’s teachers and I were unable to prepare him in the way we knew he needed. We did our best.  I visited the school to discuss and develop the use of an i-pad to support Dylan’s transition. I started using communication software at home which Dylan used at school. I made a gallery of photos of Dylan’s time at school. The school speech and language therapist wrote a social story about leaving school – not ideal, as we couldn’t be sure where Dylan might go instead, but we opted for one of the placements that was being discussed and crossed our fingers.

cetificates 005At the school Leavers’ Assembly I wasn’t sure whether or not Dylan understood what was happening. He only half-accessed the event, collecting his certificate from the side rather than the front of the hall and legging it at high speed afterwards. I thought that Dylan probably either knew exactly what the significance of the event was or had no idea. Afterwards I encouraged him to choose a frame for his leaving certificate and helped him hang it on his bedroom wall, wondering  if this object of reference would become another focus for grief – and if so, whether or not this was really helping Dylan?

Loss and Remembrance

Since Dylan left school I have been in continuous negotiations with relevant professionals while he accesses an ‘interim package’ of support.  The difficulty for Dylan, of course, is in the interim-ness of the care. With the false starts, uncertainty and lack of a fixed schedule it has been hard for me to tell Dylan what is happening from day to day. Despite best efforts, this is the worst case scenario for Dylan and I’ve been watching him carefully, trying to fathom how he is feeling and how well he is coping with the loss of school and the lack of certainty in his days.  There have been some signs of anxiety – the jumping which Dylan does when he stressed, for example – but, generally, I’ve been surprised by how well he is coping.

transition 001However, when I went into his bedroom one evening last week I was amazed to find it full of greetings cards. Dylan had arranged these on his drawers, shelves and wardrobe; the room was a riot of colour. You will see from the photograph that the cards mark a variety of different events but prominent among the messages are ‘Good Luck’ and ‘Sorry You’re Leaving’.  These are the cards which Dylan received from his short break provider and from school when he left. I’d stored these, along with last year’s birthday cards, in a box in Dylan’s room. I had no idea Dylan knew they were there but clearly (as with many things) he knew exactly where they were. Why did Dylan decide to get them out of the box and stand them up in his room? I assume because they are ‘objects of reference’ for a transition – or process of change – which he is struggling to come to terms with and which creates strong emotions in him.  Getting the cards out of the box and putting them where they could be seen seemed to me to be Dylan’s way of recognising and acknowledging his continuing sadness and loss. The cards represent places where Dylan was happy; displaying the cards appeared to comfort him but they also acted as a means of communication with me, letting me know that he was thinking about places he has lost and was feeling sad.

transition 006At this point I made a connection between the incident with the greetings cards and something else that Dylan has been doing recently.  I keep a photo of my mum, who died in 2006, on a high shelf.  It is the only photo of my mum on display in the house and one day I noticed it was missing. I found Dylan with it; he was sitting downstairs, holding on to it and looking at her intently.  Part of me was delighted to see this. Dylan adored his Gran; when she died suddenly, and without Dylan being able to see her or prepare in any way for what was to happen, I was very concerned about the likely impact on him (and on my younger daughter). Dylan’s social worker at the time gave me social stories to read to Dylan and made various suggestions about how I might help him to understand, but Dylan appeared unconcerned. His apparent lack of interest in my mum’s sudden disappearance from our lives both troubled and relieved me; part of me didn’t believe it, part of me was glad that Dylan appeared not to be suffering.

transition 007Finally, seven years after my mum died, I think Dylan has started to openly grieve for her. The photo regularly goes missing from the staircase now; I know, when it does, that Dylan is experiencing feelings of sadness and loss. The photo of his Gran seems to comfort Dylan. He has also started talking about her and bringing me a particular story book which he associates with her. Last week, on our trip to the library, he chose The Train, a book  which ends with a little boy getting off the train to be met by his Gran at their destination station. This worried me a little as I had booked a steam train trip for us that weekend, which I knew Dylan was looking forward to – was he expecting to find his Gran at the end of the line I wondered? I was so concerned about this I mentioned it to a counsellor. Her reaction surprised me. She thought for a moment then said this was probably a healthy thing for Dylan to be doing: that if we all joined up our experiences of loss and grief, and put them together as Dylan seemed to be doing, then we might find better ways of healing. Dylan, she suggested, is making creative links between periods of loss and change in his life, and is grieving in his own way, in his own time. This makes sense to me and has been a help. Now, instead of feeling anxious that Dylan is feeling sad when he fetches the photograph of my mum, I talk to him about his feelings and try to affirm them. I also try to remember that the link which Dylan has made is that he misses school like his misses my mum: ‘Your Gran would be so proud of you’ I said to him last week:  ‘to see you leave school and start at the day centre, all grown up.’

What have I learned from this? That ‘transition’ is another word for loss. That when we lose something we don’t always show at the time how sad it makes us.  And that Dylan has his own ‘grief map’ of things he has lost and which he misses. Transitions are never easy to prepare for but some are more difficult than others; my professor’s ‘rule of three’  can’t help with the death of a parent, as I found out.  Such a  reflection raises the difficult thought that one day Dylan will face a deeper loss than any yet. Perhaps these smaller losses, and Dylan learning how to remember them, are part of the preparation for that.

9 thoughts on “Autism And Transitions: supporting Dylan through change and loss

  1. Thank you for the post, it has really struck a chord. My father-in-law died a year ago. My 9yr old Autistic daughter seemed not to be troubled by his passing. Now we are struggling with severe separation anxiety from me. I think it is her grief, trying to cope with his passing. I think she thinks if I am gone from her sight I might never come back. Transitions are so hard, we can prepare for them as much as possible but sometimes it is still not enough.

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    • Hi there – thanks for reading (and tweeting) my post. I’m sorry to hear about your loss – as I wrote the post I was thinking to myself that other families must have experienced this too, but except for one family I’ve not really talked about it before. Your daughter’s anxiety must be hard for you. We need to be so patient don’t we? In a way your daughter’s reaction, hard as it is, shows a lot of mature understanding and logic about bereavement and the fragility of all of us. I can imagine it must be very scary for a child to realise that for the first time. I don’t think Dylan has – I think he is starting to recognise his sadness but hasn’t yet joined up that I may be part of it one day. But realising the delay in his reactions sometimes, who knows. The other thing is about our own grief in the face of bereavement, and how we can do that for ourselves alongside supporting our children. I remember I found that very hard when mum died.

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  2. A beautiful and moving post, Liz. Thanks so much for this – and, indeed, for all your other posts, which clarify so much that sits at the back of my mind, often fogged and overwhelmed by the enormity of what constantly shadows day to day. I know that I tend to avoid looking straight at what’s coming, and that can often make it worse – then, it becomes a shadowy dread, constantly nagging and dragging down the present, out there in the scary unknown of the future. I think I’ve been dreading the leaving school transition ever since my son settled into his special school, aged 4 (he’s now 13)! Your thoughts on this very difficult time for you and Dylan are so insightful. My son adores his school and all the staff and other children. It’s going to be so hard for him to be suddenly separated from all that. My heart goes out to Dylan. So moving, the ways in which he is creating his own ‘grief map’ and finding a way, via your loving help and sensitive insight, and his own inner strengths and resources, to navigate his loss and sadness.

    Melanie

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    • Hello Melanie – lovely to hear from you and thanks for your nice comments about my posts. I know exactly what you mean about avoiding looking at what’s coming – I do quite a bit of that myself. Dylan leaving school was the first time that I tried to stare the future down. Now I’d say to someone a few years behind our experience, like yourself: enjoy every minute of your son’s time at his school – as well as special time for him it’s a blessed time for you and the rest of the family. I’m not sure I quite appreciated this at the time. I think that transitions can be harder for parents than for children and I’ve tried hard to separate my own grief at Dylan leaving school from any loss that he is feeling. That’s been quite a challenge because it is a shared loss in many ways – but the concrete focus for D’s grief which I describe in the post convinced me that he was also experiencing it and that it wasn’t just me projecting my feelings. Our children are resilient – perhaps more than most – and I’ve been proud of D. Do savour the days while you have them – you will be a wonderful guide for your son when his time to leave school comes I’m sure. Liz, x

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      • Liz – thanks so much for this lovely reply, so full of truth and best advice… You’re so right about savouring the moment and enjoying this time. I think, as time has passed – and especially now that my daughter has reached her sixth form years (in what has seemed like the blink of an eye!) relaxing into the moment becomes more and more of a goal. It’s a cusp I always seem to sit on now, somehow – between loving the present and all it offers, and that nagging worry just over the edge into the future. My aim to make the most of now is winning most times (the edginess persists in looming, but I’m getting better at reaffirming the present). I love the times when we can slow down and my son and I just sit together, and relish where he is now, sharing this stage in his life before it slips away. I think you’re so right too that the transitions can be harder for the parents than the children. Our children so often surprise us, don’t they. And it’s so true – they are very resilient and full of amazing inner strengths and personal qualities. Too often, this is something that can be overlooked by those who don’t know someone with learning difficulties; how much children like ours teach those who open their attention. Maybe it is the rest of the world that has difficulty learning… Every child I’ve met who has learning difficulties has had so much to offer the world. I’m so sure that Dylan will continue to make you hugely proud. His and your strengths seem to me to be a powerful combination!

        Thank you again for your kind words… And, as ever, wishing you lots of luck with the journey. Looking forward to your next post…

        Melanie x

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