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 

Anxiety, Stress and the End of the Universe

“Oh, the anxiety and how it troubles me”. Yep you guessed it, my anxiety has got worse. It started to deteriorate about Christmas and now I’m having trouble eating, swallowing and sleeping. I have been begging for help but everyone just says it’s normal for Autism. I also suffer from terrible depression and that has been getting worse too. I feel very alone and desperate clinging to any ray of hope to ease this awful feeling. Anxiety isn’t new to me I’ve had it lingering around chronically since the age of nine. The thing is of course which is worse autism or anxiety? How would life be if one had one and not the other? I can’t answer, all I know is I’m desperate for relief.

As a consequence to this I did not go to the thing for Tilly at the Royal Academy. I opted out about a week and half before the day having realised that my present bout of anxiety was too high to enable me to do it. As you can imagine the whole thing was very distressing, feeling like I’d let everyone down and of course I was curious about the event and wanted to experience it. I don’t think this is the last we’ll see of Tilly at such events so maybe I’ll be able to go to one of those. From my mum’s report the actual day at the Royal Academy went well. She said she enjoyed the workshops she attended and networked. She is now quite an expert on “female” autism and how it affects one. She was very good when I said I couldn’t go to the event and instead encouraged me and dad to have an afternoon at a National Trust property near Bury St Edmunds which has a very nice tea room. We did an hour’s walk and saw lots of lambs which cheered me since I was rather down about missing the Royal Academy. So all in all we all had good days if not the ones we intended.

Apart from the Royal Academy event and chronic anxiety life has been ticking over quietly. I’ve played a little golf, listened to lots of music and continue to read “the hitchhikers guide to the galaxy” – I’m on book three at the moment. Some of it is so surreal it is a bit complex but it is such a great story, so well written and very funny. Also I went to Build a Bear with the National Autistic Society where I bought two new bears. One is a horse called Kennedy and the other a sort of street cred bear who I’ve called Montana. My flat is getting rather full of cds,  Bears and souvenirs  people bring me back from holidays and that’s not mentioning my fridge door which is covered with fridge magnets, mainly from holidays my parents have taken in the last 6 years.

Anyway “onwards”. I know I must keep going even through the hard times. Let’s hope we can find some relief from what can be a “living hell”.

“Busy, busy.”

 

Yes, it has been ‘busy, busy’. The last week and a bit have been full of challenges. I have often been very anxious. But I have come through which I think personally is a great achievement. The problem is that if only I could say to myself I did that so I know I can do it again. The trouble is it doesn’t work that way for me. Everyday feels like starting over again. My niece came to stay with grandma and grandad (ie my parents) for half term so I did a bit of auntying. Now I’m not really that great at it and find the whole thing very challenging, and I did beat her at tenpin bowling twice. I also managed burgers at a local restaurant without choking so that was confidence building. And I did play some nice games with her like Monopoly.

As many of you may have heard “Tilly” is going to the Royal Academy of Arts in March for the SEND conference “Why and How” and I have agreed to take part in a panel discussion live. Why I said yes I don’t know – but I do think it is really important to talk about female autism – but the whole thing is just huge. Not only do I have to appear, I’m also doing two nights in a hotel and eating out. My parents are coming, my mum will be with me, so I will be looked after. Also, in this most hectic week I’ve had our organiser Susan and the illustrator Ellen get together in my flat for a discussion on what we were planning to do at the Royal Academy and also Ellen brought along some of the first pictures she drew for “Tilly” and it was absolutely fascinating to see the process up to the finished book. We are now busy emailing each other with ideas. I’m just going with the flow and hope I don’t sound too nervous and dull on the day.

And if this wasn’t enough I also fitted in a trip to the dentist – I need a crown. I find visits to the dentist especially nerve-wracking, because I hate things in my mouth as well as the taste and smell. Fortunately I have a kind and understanding one. But the big highlight of the week was the trip to see “Rumours of Fleetwood Mac”, the best Fleetwood Mac tribute band out there. This my sixth occasion of seeing them and although the set list hardly changes year on year I’d still say they are a quality night out. It probably helps that I’m a huge Fleetwood Mac fan who has studied the band so my knowledge is really great. I did once about 13 years ago see the real Fleetwood Mac in London with my cousin and I must say it was brilliant but “Rumours of” fill a gap if the real band is not touring. I do find going out in the evening very stressful and I had my usual toilet “do I need to go/do I not need to go” the whole way through, but my National Autistic society carer Anthea was very good and got me through it. We even took a picture of me at the venue to send to my mum and here it is.

Things are calmer now. I got back on golf course on Tuesday and Friday. We did the usual shopping and cleaning. There is word of a trip to “Build a Bear” for a treat, I’m still looking for Montana and Kennedy!! To go with Madison and Dakota-Brie my other cheerleaders. Anyway as I said Busy, Busy but just about surviving!!

Coming over all political

January has been rather hectic with autism stuff. I attended two meetings, one by Cambridgeshire County Council and one by an organisation called “Speak up spectrum” which is supported by Voice Ability. The Council meeting was quite intense and had important people from around the county. The main thrust was getting people into work and sustaining work. I feel in some ways they were missing the point. Many autistic people struggle to get through a day without having to work as well. I would love to work but find it hard to cope with the basics of life without having a job too. I just feel a broader outlook from the powers that be might be better to improve quality of life for some of us.  At “Speak up spectrum” we too touched on employment but also discussed our campaign to find good social spaces like bowling or the pub. Our leader had also been to London to discuss autism with MPs etc so we had feedback from there. As you can imagine I found this all rather stressful but I feel  it is important in our quest for better understanding for autism (our “speak up spectrum” leader is a woman).

Mum went to a conference on female autism in London called “the Big Shout”. She found it very useful especially listening to some girls from Limpsfield school. She discovered, which may seem strange at such a late date, that it is typical for women and girls on the spectrum to suffer from overwhelming chronic anxiety and to self harm and have suicidal ideas like me. Now I’ve had chronic anxiety all my life and my parents have tried everything but hearing it enabled both my mother and me to accept it and feel “normal”. Over the years my parents have realised that my anxiety cannot be helped by reassurance and ordinary ways of coping. They and my carers praise me for the good things I do in a day which makes me feel I have achieved something. I also reward myself every few months with a cd or two.

I challenged myself the other day by going out for Sunday lunch. I had roast beef, it was very nice but very challenging. I get so worried I will choke and vomit, it is really scary. I will also go out when my niece comes for half term. I do find children a bit of a nightmare. I have no clue what to do with them but I’m going with her to a golf lesson and bowling so hopefully all will be ok. She’s very lively!!! I’m still on the golf course most weeks trying desperately to hit a good shot. Sometimes I do, but others end up in the lake. I do enjoy it but I get so frightened beforehand that my bowels won’t hold out or I’ll have a panic attack in the middle of the course. Anyway enough about my golf woes. I struggle on and Tilly goes from strength to strength.

When the wheels started to fall off

At the moment I’m reading “The Hitchhikers Guide to the Galaxy” which has me musing on the meaning of life. One thing I often ask myself is how different life might have been had I been diagnosed earlier. The signs were there but they probably thought I was just a low achiever. Why people didn’t think “what’s up” when it was clear I was struggling and being a nuisance in class. I used to chat incessantly, sing and copy the person next to me. I was utterly lost. I got diagnosed with Dyslexia at 8 and everyone thought that would be the answer. But even with extra help I was still way behind my peers. I’m measured as having a pretty high IQ so you can imagine my humiliation at being in remedial reading. Most of my contemporaries treated me as being a few sandwiches short of a picnic. My favourite thing to do was play. Me and my brother played huge games with Playmobil which would fill the living room floor. We had friends in the street so we used to play games with them. I loved long summer holiday nights with about ten of us playing baseball and talking. I wish those nights could have lasted forever but suddenly my friends didn’t want to play or “hang”. One told me we were older now we didn’t play games. I was gutted everyone had grown up but me!

A New Year…

A New Year and Tilly marches on. The New Year is hopefully going to be good for girls with Autism, although I think it will be challenging too. Tilly has led us all on this journey and where she takes us next I can’t say but I hope above all it will be positive. Firstly I would like to introduce myself – My name is Rachel and I am the real Tilly! Mum says the name just popped up when she started to write! Where did that come from!

Tilly’s story is my story, but with one big difference – I wasn’t diagnosed with autism until I was 33 years old. I’m very happy for my mum to write this book and hope that in writing this blog people can read about my life and relate to it and not feel so alone. I’m not going to lie. Life has been really tough with some very low lows but it seems really important that through my telling my story other girls will have better chances than I’ve had.

I’ve enjoyed being a “consultant” on the book and am sort of flattered that I’m the subject of a book. Mum says the book came about when one night she sat down to write an angry letter – not sure who to, just someone out there! – about my life and all the missed opportunities to properly diagnose what was wrong with me. But the letter turned instead into the narrative that would be “Tilly”. I sometimes get very angry with the world about people not knowing what is wrong with me and their inability to make me better. I often fantasize that I have my own unique disorder – Batesian syndrome – and that someone famous will want to study me and can make it all better so I can have a normal life. I often feel my problems are a punishment for me being a bad person and that the whole thing is my fault. On occasion it feels like I let all the bad stuff in and now I can’t control it. I have stated all this and more to people who are supposed to know but until the suggestion of autism came about they all seemed not to have a clue.  I don’t blame them, I just think I’m more intelligent than them or something. I feel like I gave them all the pieces but they failed to put them together.

The Book Launch

It’s here!! Tilly has arrived!! The book was published last week. I have been so nervous wondering what people will think. But so far so good. People who have read it keep saying what a good and important book it is. I can’t believe my story is helping so many. The big nerves, however, was saved for the launch event in Cambridge. We booked out a bookshop in Cambridge and we had 80 people there.

There were friends from parts of the UK, psychologists, teachers, my carers and people on the spectrum. I don’t think I’ve felt so sick in a whole room full of people who want to talk to me. Usually at this kind of thing I feel a bit of a gooseberry but here I was the centre of attention. My Mum gave a talk thanking people in particular the illustrator who has done so well bringing Tilly to life. And me! We also had a few words from a Consultant Psychologist who my Mum’s known for ages. My Mum was close to tears but then so was most of the room. After the speeches I sat down to sign someone’s book, looked up and there was a huge queue who wanted their book signed by little me. I must have sat for half an hour signing. I felt like “One Direction”! We sold all the books in stock. What a night! My fifteen minutes of fame! I’m just so glad that people are enthusiastic about it and I’ve been told that schools are using it already and two girls who came with their Mums loved it. I just want to say how pleased I am by everyone’s reaction. Here’s to girls and women on the spectrum the world over – small steps to get the recognition we deserve.

Rachel