Why and How

Image courtesy of Royal Academy of Arts, Photographer Roy Matthews

So far the website has been the home of Rachel’s blog. It appears that her mother is now muscling in!

I decided to write because I wanted to talk about the “Why and How” event at the Royal Academy yesterday. March 18 ) One word would do, actually – brilliant! – but I think it would be good to be more expansive!  Ellen Li and I were part of a panel talking about female autism. Do have a look at the Royal Academy website to find out more about the event and also to find out more about how the Academy creates opportunities for access for a wide range of people who might otherwise be excluded.

I know that the RA had received a large number of submissions and so it was a huge privilege to be selected. My friend Susan Potter who, by a very circuitous route, alighted on Ellen as the illustrator for “A girl like Tilly” way back in 2014,  put in the proposal and to my delight and surprise it was accepted. In the light of the huge interest in the subject that there clearly was among the delegates it was an appropriate decision. It touches many, many more lives than has been previously thought, as was evidenced by the personal experiences some delegates spoke movingly about.

I will say more shortly about the panel session. It came at the end of an amazing day that Molly Bretton and her colleagues had organised. A fascinating list of delegates, many from museums and galleries, worlds I am certainly not familiar with. An extremely interesting introductory session by staff at St Joseph’s Specialist School and College kicked off the programme. We heard inspirational case studies of young students with complex needs who had responded in remarkable ways to a collaborative approach between the Art Therapist, Artist in Residence and the Art teacher. I especially related to the overall goal which is to promote emotional wellbeing through the creative arts. This links with my “day job” as a CAMH Learning and Development Consultant providing training in mental health to schools and colleges in Cambridgeshire. I think that we have a responsibility to create school environments in which all our children and young people can learn how to look after their mental health and emotional wellbeing. A huge part of that is to equip them with the life skills/ resilience to cope with life’s challenges, including the ordinary ups and downs and distress which we all experience.

I then attended a workshop called Autism, sensory processing, wellbeing and clay (run by Tatjana Zeljic). This was totally out of my comfort zone which is actually why I chose to go – only realising on the day that the panel session itself was taking me well beyond my usual boundaries! Each of us had a rather- to my mind at least- intimidating ball of clay sitting in front of us and the invitation was to initially create something of one’s own, then to work in a group.

I don’t really like getting messy and I wondered if I would cope. Rings off fingers and just get on with it! The texture was strange and I found myself just moulding it without a clue in my head what to make. The young woman next to me wisely advised me not to overthink it! I quite reluctantly decided to stop just kneading it around like a Bake Off contestant. And what did I make- well, something resembling a bowl of fruit. I’m not sure if anyone else could actually recognise it as such.

What was incredibly enjoyable was the chatter round the table. People who had just met for the first time! Whether there’s something about a hands on activity that encourages interaction is an interesting thought. As a result the group activity was brilliant. One person already had an owl, someone else a cat – yes, you know where this is leading —! Soon we had a boat, a runcible spoon (what exactly IS that?), honey pots plus hive and bee, money in an actual five pound note and a pig “with a ring at the end of his nose”. Great fun, impressive that we had collectively remembered the poem and we were all set to embark on any other nursery rhyme you could mention.

So we were wide open to interpretations! The feel of the clay putting us in touch with our childhoods etc! Overall not a bad place to go back to for most of us but an awareness therefore of those for whom it might be intimidating. The facilitator was skilled and containing and talked very interestingly at the beginning about the use of clay in a therapeutic environment “to enhance creative engagement and wellbeing”.

The workshops were, in general, offering experiences of the sensory world. I guiltily crept out of my second one in order to make contact with family at home and buy a gift for my daughter- about more later.This is an opportunity to apologise to the super facilitator and I, of course, heard glowing reports of the session which made me feel slightly miffed with myself! But even by then I was beginning to feel a bit “overloaded”. I don’t think that the day was actually set up with the intention that we would all experience sensory overload but that’s certainly where I felt I was heading at one stage and it was pretty uncomfortable. Experiencing that almost constantly must be overwhelming – indeed we know it is. An extremely helpful piece of experiential learning

My second and last workshop of the day was Music and movement for children on the autistic spectrum (run by Athina Stamou). When I arrived lots of people were already lounging around on bean bags but, fortunately for those of us with dodgy backs, chairs were also available. This was the second time that day in which I realised I had walked into something fairly intimidating for me. There was talk of dance and activities. Ballet lover though I may be, I do not regard myself as a natural dancer – aforesaid dodgy back is also an issue!

But, the session hooked me in and soon I was weaving around, responding to the – extremely enjoyable – guitar music, beautifully played. And, guess what, it was great fun! The excellent facilitator had given a short presentation with very impressive evaluations indicative of how well the dance/ music, sorry –telling interventions had worked with a group of primary age children in main stream schools some of whom were on the autistic spectrum. It enabled them to feel more included and engaged and also encouraged speech in a non – verbal child. Very impressive.

The question at this stage taking shape in my mind was “How to follow that?” The workshops had been so good, so stimulating and thought provoking and I was feeling concerned about how people would now engage with a session in which they were all sitting in rows. I also feared that many might have decided to start making their way home after a long and inevitably tiring day.

But I think that there was huge curiosity about our subject. It’s also pretty high profile right now.

Our title was Making the invisible visible. Susan had taken “A girl like Tilly” as the inspiration with the collaborative process between me and Ellen very much in mind. How did we combine text and illustration to bring a little girl’s inner life alive on the page. One of our key aims in the book had been to portray Tilly’s feelings and how she struggles to communicate and understand them. This is indeed a fascinating topic and certainly one on which we could have talked for ages. In the event, and not surprisingly, the delegates chose to focus on learning more about how autism presents in females. We had asked Sarah Wild, Headteacher at Limpsfield Grange School to join the panel and her experience and knowledge were hugely helpful- as well as her enthusiasm and sense of humour! Susan guided us through with superb chairing.

As well as sharing my thoughts about the day, I really want to say more about the “real Tilly” , my daughter Rachel, which I didn’t do in the session,  and the reason for writing the book. The original plan was for her to be on the panel with us and she had expressed great enthusiasm about the event. My husband and I talked with her about how we could make the trip to London manageable for her. On past visits the underground and trains had been challenging. She had talked with Susan and Ellen and been entranced by Ellen’s portfolio of spreads for “Tilly” showing how ideas had evolved over time. There is no doubt that Rachel would have done a great job. She is very bright, articulate and funny. She is also passionate about widening understanding of female autism. But the practicalities were just too overwhelming and, I think, the anxiety about how long it would take her to recover and be able to manage her daily life again after such an upheaval. I believe that’s an underestimated and misunderstood aspect of the experience of those on the spectrum. It can take a very long time to get back on an even keel. She felt very upset and that she was letting people down. But, on the day, she felt very present to us all.

Of interest to me was that over the previous weeks the true context for the book had slowly dawned on me. I had always said that “I sat down to write an angry letter and it turned into a book” but why was I thinking of doing that on this particular November night three years ago?

What I slowly understood was that we – Rachel, her father and I – were caught up in a crisis. Rachel had been in supported accommodation for two years. In fact this was the second place she had lived in since leaving hospital after a stay of some eighteen months through 2006 into 2007 and the expectation/ plan was that she would now move on into independent living. This was an alarming prospect for all of us. What would the accommodation be like, where, what kind of care package? How on earth could we take this young woman, with a history of serious self- injury and multiple suicide attempts, to her own home after a visit to us and leave her?

At the same time, the boiler in the accommodation had recently broken down and there seemed to be little sense of urgency about getting it repaired, despite the fact that residents were without heating and hot water during a very cold November. The staff were doing their best with a housing association that didn’t seem particularly interested. Rachel was able to stay with us while repairs were being carried out and, in fact, her room was soon habitable again. But others weren’t and lots of very vulnerable people with serious mental health issues were left to cope, not having friends and family to go to.

David and I decided that this was unacceptable. There seemed to be an attitude that these vulnerable people were of no account. This struck a chord in terms of our own experience, trying, sometimes, in vain, to make people understand Rachel’s difficulties – and indeed our own- and to get support. So we engaged in yet another battle and wrote letters, made phone calls etc. Many parents will know that these battles are unending. They go with the territory.

Hence, angry letters being habit forming, there I sat prepared to write another one. This was going to be a tirade against the unfairness of the world that had allowed my daughter to be undiagnosed/misdiagnosed (eg. Borderline Personality Disorder) for so long and the resulting misery she had experienced.

But, it transformed into a book! My memory is that initially I started writing a kind of family biography, but it morphed fairly quickly into a children’s book, a text that definitely needed illustrations for it to be accessible. And not just to children. I felt from the beginning that this was for adults,families and professionals too. And the name Tilly? Well, that also came out of no- where. Apparently it means “Strong in battle” in German. How good is that!

I use the word “transformed”, advisedly. For me it means “hope and positive change”, being strongly associated with one of the places I love best in the world, the Royal Opera House, truly a place of transformations. My special favourite is when the Christmas tree grows and grows ever larger in The Nutcracker, the nursery comes alive and Clara learns about falling in love for the first time. What a magical journey it is.

I have often said that the book felt meant to be. So many things have fallen into place so easily; finding the wonderful Ellen, being accepted by Jessica Kingsley. But it’s also worth saying that it’s often been a painful process, taking me and my husband back into dark times, the sense of wasted time, lost opportunities, guilt that we might not have pressed hard enough, written too few angry letters.

Also, I would describe ourselves as a private family; we try to manage stuff on our own. This may or may not have been a good thing for us/ Rachel but it was therefore a very big step to take Rachel’s story out into the world. Who knew what the reaction would be?

But, above all, still with transformations in mind, the reason for carrying on with the book was to give meaning to Rachel’s life, to transform her experience in some way. Sadly she finds it very hard to find positive achievements in her life. Her experience at secondary school, the total lack of support and understanding had made her feel a failure despite other positives such as being in  a punk band with her brother, her horse riding and fencing. When we moved to Glasgow in 1995 she gained three As in her Highers and went on to obtain a place at Glasgow University which she was unable to take up because of her deteriorating mental health – in particular her OCD. How can you cope with study when there are only certain times in the day when you can pick up books, use a computer etc. And yet she showed incredible will power and determination to make something of her life, always with the hope that things would change. She did ride a motorbike, she did some very creative voluntary work, she enjoyed going out with her lovely, committed befriender. And people warm to her, become very fond of her because she has such an endearing personality and her intelligence shines through. Most of all how can we convince her that she has fought and conquered demons which many people would have been defeated by?

Rachel was clearly a puzzle to the doctors and nurses who increasingly, became part of her life both in Glasgow and then in Cambridge because of the escalating self- harm and suicide attempts. Looking back I realise that they were trying to construct a narrative to fit the way in which Rachel was presenting. A diagnosis of Borderline Personality Disorder seemed to be the closest they could get – however her background, family circumstances both past and current really weren’t congruent with that. Our and Rachel’s frustration built up over the apparent lack of proper understanding and failure of all treatment interventions.

Then, six years ago a perceptive music therapist wondered whether Rachel might be on the autistic spectrum. She was assessed and the consultant had no doubts given the developmental history.

Has having the diagnosis made a difference? Well, for us as a family it provided a narrative that totally made sense of our experience. Rachel will need to speak for herself in terms of what it has meant for her. The wilderness we lived in for so long is shared by so many girls, women and their families. The study of autism has been so male centric – and to some extent still is, although, at last, the call for proper research is out there. As the girls at Limpsfield  school say, “We are different from the boys” and that is what schools, colleges, professionals in all settings have to get their heads round.

And making a difference is what “Tilly” is all about. Offering Rachel a different narrative about herself, that her story can help others. Helping me to realise that yet another angry letter can only achieve so much. (And acknowledging how much sadness and grief lies beneath the anger) So much better to aim to make a real difference, reaching a wider audience. And we are already finding out anecdotally that it does, bringing comfort and reassurance, kindness and compassion into difficult lives.

Thank you so much to Molly and her colleagues at the RA for providing the opportunity to share our knowledge, experience and hopes for the future.

–    Helen 

One thought on “Why and How

  1. Helen says:

    And just a quick follow up.
    We were asked a question in advance about how bst to support the transition for young people with disabilities into the adult world i.e. from school into employment. Rachel and I had given this some thought ahead of the day and Rachel had very much wanted to make the point that not everyone can progress to employment and that it’s important that other options are thought about with quality of life a priority.
    My memory is that Sarah said something similar on this point but I wanted Rachel’s contribution to be included because it’s important.

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