Telling it how it is

I’ve written a few blog posts now, but I’ve decided that now’s the time to tell it like it really is.

Germs, germs, germs – winter brings them and I enter psychotic germ fear. Every little sneeze, every tickle and it’s “god, I must be ill”. The fear is like a brick wall because there is no escaping one’s fate and feeling of doom. I’ve been an illness phobic since I was nine when I had food poisoning but this year my fears are worse than ever. I hate the loneliness of no one grasping how awful this phobia is, the all-consuming fear. Yes I know there are treatments. I’ve done CBT more times than I have fingers. I’ve had medicine and their accompanying side effects. I’ve even spent a year in a hospital ward doing “flooding” and nothing works, I just get more anxious and frightened. And that’s it fright/fear how inescapable germs are. I hate it!! I hate life because of it. I get nervous even with my parents and the outside world is a nightmare. Obviously going to the doctors is a huge thing but even letting a carer into my flat freaks me out – are they ill? Have they just been ill? Are they germ magnets?? I get so frightened my left arm goes numb and I fear having a heart attack.

I used to do things. Enjoy the cinema or theatre, going out to eat, going into town, trips to London whilst now I find it hard to go to Sainsbury’s. But you have to force yourself and fight against your life shrinking. My life has deteriorated over the last few years and I’m desperate for help. I don’t know how many people on the spectrum suffer things like this. I don’t think I’m alone. I know the depression is linked to autism in women, so although bad news at least there are others like me. One thing I find is that I never learn from situations, everything is always new. Just cos I made it to the supermarket or golf course one day and coped my head doesn’t go “ok you did this yesterday and you were fine you can do it again”. No, my head goes “anything can happen, bad things can happen”, thus the anxiety gets worse and what in the end was routine yesterday is now a whole scary, nervous making activity.

And to top it off, Christmas is coming. I find Christmas hard. Family members bring germs, will I be ill for Christmas? (I had a bad cold last year), will I choke on my lunch. This year because my parents are currently moving house we are going out for Christmas lunch – mega stress alert!!!?? I’ve been to the restaurant a few times so I know it but I just get scared. The best strategy I can think of is getting up early so my stomach is rumbling with hunger when I get there and feel relaxed enough to eat. Anyway we all have the thing about parents moving house. I’m actually looking forward to it cos the house is lovely and it’s not too far from my flat. At the same time I know it’s going to have an impact on my routines so that will be difficult. All I can really do is keep on listening to rock and roll and praying with all my soul for relief from this truly awful condition.

I’m 40! Arghh!!

I made it! I turned 40 last week. It has been over the years a bit touch and go, but there I was surrounded by cards, presents and balloons. The day itself was pretty much my usual one, then in the evening people started ringing and my parents came over to the flat. My big present is a new set of golf clubs, which are on order as I write. The actual choosing of the clubs was quite difficult but I think I chose the right ones. I have been worrying all week – did I order the right grip? Will they make it the right size? Will these clubs improve my game? Anyway they should be ready soon, I can’t wait!!

I went out for a birthday meal with my family at the bank holiday. I just had steak and chips but the rest of the family went seafood mad. Even my 10 year old niece tucked into a bowl of mussels. I was very nervous so I didn’t eat much and the sauce didn’t taste very nice. Fortunately it came in a separate jug so I just didn’t eat it. But the steak was really nice sauce or no sauce. And I’m so glad I had a celebration with my family, even though it was very daunting.

Then with my niece trotting along, we went to a garden with the National Garden Scheme during the Garden and Health Campaign. Every year garden owners open their gardens to the public. This year the campaign was about getting active in your garden and we went along to a garden in our area earmarked by the National Autistic Society. Thus we found ourselves at Wild Rose Cottage in Lode, Cambridgeshire. There were actually few roses but there obviously had been some pretty vigorous planting because it was just packed with plants, sadly few flowers. The garden was divided up into “rooms”, my favourites were the veg patch (a huge pumpkin almost ready to be picked) and a brilliant pond which looked packed with wildlife. There was also a lovely summer house where you can imagine sitting with a glass of wine and a good book.

I do love a good garden. As I have gotten older I enjoy a good nose round a garden be they National Trust or National Garden Scheme or just open to the public. I’m particularly keen on Rose Gardens and cottage gardens. I like flowers that attract wildlife and I like my planting a bit haphazard although I’m sure most of these gardens are well planned. As for roses – I do love a Rose!! The other day I went to a National Trust property called Anglesey Abbey. I go there a lot but don’t necessarily stop at the more formal gardens. Anyway we decided to take a look at the rose garden, which was lovely. I love the smell and the gentle beauty of the flowers. These days I don’t groan at yet another garden. I have learned to appreciate how great they are, even though because of my OCD I’m unable to get my own hands dirty.

A Tail of Two Cats

My support worker and I were outside our local Asda when we noticed a cat carrier box, as we are both cat lovers we went to have a look and what was inside? A tiny 10 week old kitten who’d just according to the owner who was with it had just had its first injection. Immediately we started talking about our cats when they were kittens. In my mum’s book “Tilly” cats are featured, mainly Gilbert who my parents had before me and my brother where even born. Gilbert died when I was 11 years old and I was devastated, however, he was soon followed by Flo who had a completely different personality. Flo died 20 years ago and I still miss her.

So my first experience of pet ownership was rather accidental as was the fact that my parents had a cat at all, they are not natural pet owners. But once we got passed the tail pulling and general mauling of Gilbert when I was small, Gilbert soon became my best friend. Once Gilbert sat on you, you knew you were sat on. He was a big tom cat, all black but still in my eyes adorable. Gilbert was a bit of a wimp and was rather bullied by other cats. He very much did his own thing, going out a bit then spending the day asleep. He enjoyed being stroked and had a quiet purr, he also “padded” before he sat down. This drove my aunt who is a lot younger than my mum to the edge of madness. He would do a good five minutes before he could settle. He was also the subject of many of my early art works and well reported on in my “what I did at the weekend” book on a Monday morning. Gilbert was my first experience of that kind of unconditional love but was also my first major death. I could cry for Gilbert many years after he had gone. He was a very important part of my life and very wise. I used to tell him everything and he would make me feel better.

Flo on the other hand was in many ways what Gilbert was not. She meowed and purred loudly, making her presence known. She was small and all white and was bossy. If we visited a friend in the street Flo would follow and meow outside their house to be let in, even if they had a dog. We had to hide when we went out to outwit her. She hated not to be where the action was and would throw herself against any closed door demanding to be let in.Unlike Gilbert she was friendly with other cats and enjoyed nothing more than sitting with her friends on a garden wall. But Flo was highly strung. She would “nuzzle” into your armpit as if getting milk and in later life developed an OCD thing which left her bald on her stomach through constant licking. I think it must have been hard for Flo. We got her just as my problems started to be serious rather than just “well that’s interesting”. She witnessed it all and even saw me self harm which must have been destressing for her. Flo only lived to 12 as opposed to Gilbert’s 15. In some ways she was a damaged cat from the start taken from her mother too young, nearly dying of cat flu but how I loved her. She again was my best friend like Gilbert but was so entertaining and loveable.

Having these two pets enriched my life in so many ways. They say pets help with many different illnesses and disabilities and I would definitely agree. Ok I haven’t had a pet now for twenty year but it’s not for want of trying on my part. We’ve moved around and my flat now doesn’t allow pets, not that I think I’m capable of looking after one. I do have a carer from the NAS who tells me about her cat which I love hearing about. So maybe I just have to remember Gilbert and Flo and cling to their memories – the happy times, the snuggling times. Maybe they will always be the only ones who ever understood.

A brush with celebrity

I survived! My parents went away for 2 weeks and I got through it. I had carers every day, sometimes twice and what with them and pure guts I got through. It was weird though! Drinking gave me the burps (unlike normal) and I completely lost my appetite. I kept having moments when I thought I was going to vomit. Which is normal but this was worse than usual. Ideally I just wanted to stay in bed but my carers took me out on trips including “Build a Bear” and the Botanic gardens. My most nervous moments were the few days before they came back when my anxiety and panic attacks reached new heights. But pretty much the moment I knew they were back I started to feel better. It’s taken a good week to start to feel normal again i.e. my usual anxious self but I did make it and that’s a great feeling. In most ways I’m glad that I let my parents go on holiday. Yes it is a challenge but there is nothing like a recharged and relaxed carer. So now we are back to normal apart from one of my favourite carers has taken the second week of Wimbledon off to watch tennis and I’ve lost my rota so I have no clue about who is coming on Monday.

As a treat for surviving their holiday my parents took me to see historian Lucy Worsley talk about Jane Austen at a history fest at Wimpole Hall near Cambridge. As I may have probably said before I’m a bit of a history fan and combine that with a favourite author, Jane Austen, and you have a match made in heaven. I have actually seen her before talking about George II but this time I queued and got my book signed and my mum took a photo. I did embarrass myself slightly by gushing all about my favourite topics in history. After reeling off my passion for Russian history and Queen Victoria she looked a little surprised when I said my latest read was a history of ancient Egypt. The whole thing was quite nerve wracking, sitting in a hot marquee for an hour with worries of needing the toilet on my mind. But she is a great speaker – funny, easy to understand and not afraid to be popularist. But just to have met her and tell her how much I enjoy her work was a real privilege in fact maybe I should have told her to do something on ancient Egypt next time!!!

I have also been looking at ways to expand my life. There is a project named Red2Green in an outlying village which works with autistic people. My mum already knew the manager and I thought I was going as a celebrity having had a book written about me. Anyway it soon became apparent they wanted me to sign up to something and my mum, who accompanied me, is desperate for me to improve my computer skills. So pretty soon I was enrolling for next term which starts in September. As you can imagine I’m in two minds. Firstly my precious routine, I am very worried that it will interrupt this – when will I play golf, read or listen to music. Secondly, germs, it has taken me four days to settle after the visit. I am scared stiff of germs and being around people means germs. I have got to fight this fear because all the people we met were lovely and I can see myself maybe being part of the community. Everyone I’ve told about it is very enthusiastic, so roll on September and refreshed computer skills!!!!

But what does it mean for me?

Oh the election!! Did you get sick of it? I actually ran into some Labour people outside my flat on the day and joked that I predicted a hung parliament and what happens? Hung parliament!! But what does it mean for autism? What can politicians do for us. I think the biggest things are social care, benefits, adult services and mental health provision. We must fight against cuts in all these areas. I think voting Labour was a vote to safeguard and improve some of these things whilst what we now have leaves us in a precarious position. I had the social worker round the other day and we are all desperately trying to hang onto the 16 hours care a week I get and desperately need to be able to manage. As for mental health services – well what can I say? Where are the community nurses, where are the hospital beds, where is the therapy, the OTs etc. etc? The only service I see working is the Clozapine clinic which runs pretty efficiently on a Tuesday morning. But it does get you thinking of the future. What are my options to get out of this world where I’m at the mercy of people who have no clue what I go through on a daily/weekly/forever basis. The whole thought scares me. I think maybe getting in touch with your MP might be a good idea. Invite them to your groups, say what we want, see what they can do, make them aware. I have actually met our Cambridge MP and would love to sit down in a group with other autistic people and him and talk about the issues to say what’s important for us.

I am facing a huge challenge over the next couple of weeks because my parents are going away. Fortunately I do have some extra banked hours which I can use and I know that everyone will be helping me. But it still feels like Mount Everest without oxygen. I have strategies to help me to cope. Having carers every day, listening to music, watching television, the odd round of golf, knowing I can phone people and planning a treat to congratulate myself. And I tell my carers that sometimes I won’t feel that I can go out at all and they say it’s fine just to sit and watch TV or a film.  I find it very reassuring that they understand and think that’s OK. And I may be getting a bit better at rationalising – like, is this bad thing going to happen to me, don’t panic, let it flow and see what the consequences are. But that needs a lot of practice. And I have a folder with everything in it like telephone numbers, websites, Mum and Dad’s itinerary so I know where they are. And I put out a pile of DVDs I enjoy. It’s really helpful to have everything at hand because when I’m stressed and panicking I can’t think straight or remember where to find things or what helps me to calm down.

Anyway, I’ll tell you how it’s gone when Mum and Dad get back. I keep telling myself that three weeks today everything will be back to normal.

Are Holidays meant to be This Stressful??!!??

 

Man, life can get hectic!!! Last week I had psychiatrist, GP and Clozapine clinic, all topped off with a family get together. I was very anxious about all of them especially the family get together. The event was on the Sunday so I spent most of Friday and Saturday in a headachy nauseous frame of mind. But mum bundled me into the car and off we went. It was an hour’s drive and thank god for ipods. I enjoyed a Kiss live album as we sped along. For me though it is not the actual being with relations that scares me it is my usual fear that I will choke on my food and therefore vomit. I even fear my own cookery but going out is very stressful. I always tell myself to chew well so it is easier to swallow. The stress of it all made me very tired and today, the day after, I’m shattered. Stress like everyone knows is very tiring and draining but constantly fearing one will vomit any minute is particularly wearing. And, as I may have said, even doing something very familiar, like going to do my shopping on a Monday, is still frightening for me. It’s as if I’m facing it for the first time over and over. I’m very proud of myself for managing last week but very aware that I always need a lot of time to recover and it’s important to recognise that and not be hard on myself.

But it was nice seeing family and we had a good time but I do find social interaction tough. There were a few moments when I’m thinking “mum and dad save me”. Fortunately I managed ok and chatted about where I’m going on holiday at the end of this week. Yes, that’s the next thing to gear myself up for! I’m absolutely petrified about this holiday although I also look forward to it! Not sure how to explain that! I’m so scared about me getting ill or my parents getting ill so that everything will be spoilt. I feel beside myself around the whole thing. In some ways I shouldn’t be so frightened because we normally have a great time. But I have a problem rationalising like that. For me it is a blank slate again, the first time, as it were, and I feel a sense of doom. Last year in Salcombe was great and I really relaxed and enjoyed it. Hopefully once I’m in the car on the way with my trusty ipod, I can look at the scenery as it passes by and my sense of dread will fade. My parents are also very reassuring but do push me a bit to do things. We will go out for a few meals on this holiday if I’m up to it. As I’ve described earlier this is challenging but as my mum says that I must try to keep doing things otherwise your world shrinks that little bit more.

I shall therefore put my best foot forward and hopefully enjoy a really great holiday with my parents – let you know in a few weeks!!!!

Easter Frolics!

Oh! Sweet Easter. Lambs in the field, the end of the daffodils, the smell of lunch cooking on Easter Sunday, and of course being with family. I’m not sure whether I’ve mentioned this but I have a nine year old niece. The week before Easter my parents had her for the entire week doing fun things. Now I do find children very difficult in lots of ways. They are unpredictable, unmanageable and germ magnets. I must confess I tend to avoid them as much as possible from birth through to adolescence. So having a niece is very challenging although I do love her loads. In fact when she was born I was going through a very hard time and she gave me a reason to cling on. The problem is basically I can’t relate to people my own age let alone a child. I have little understanding or capacity to play so that’s out. I can do board games which as a family we do all enjoy. But because I find children difficult I’ve told everyone please don’t leave me alone with her although sometimes this does accidently happen and this scares me. Mum did an Easter egg hunt round the house and we also took my niece to a hunt at a local National Trust property. Last year the hunt was a doddle, this year it took me, grandma, grandad and my sister-in-law a good time to work out the clues. The actual word to spell out was Narcissus so we had to explain about the myth to my niece. In many ways it was a very middle-class hunt, I think you needed a degree to solve it. On the plus side I got some nice Easter eggs which I will be enjoying over the next week.

Of course now is the bank holiday season which messes up routine big time. It is Monday! Why am I at my parents? Oh yes bank holiday. It throws the whole week out and now I’m starting to think about my holiday which is a major cause of stress. I do like the idea of holidays and my parents always take me to nice places. We hire a cottage and do sightseeing of local places of interest and we have a few meals out, one being fish and chips. But I do get stressed. In some ways I’m lucky cos we all take a lot to do – dad a bit of light work on his laptop with a good wi-fi connection, mum reads loads of books and I listen to music. It is an adult holiday with autism thrown in.

Anyway enjoy your long weekends and try and fit in as much washing you can get in on Tuesday having missed, well for me, bedding washing day on Monday – oh the confusion, oh the anarchy! Still there seems to be a lot to look forward to as summer approaches. So “keep calm and rock on”.

Zen and the Art of Dentistry

What a week! I have been building up and worrying about this week ever since I realised everything that I needed to do in it. I had a haircut, went to Clozapine clinic, went to the GP, had therapy and the biggest of all, the DENTIST. I always worry about the hairdresser in case I get a bout of nausea half way through, Clozapine clinic is manageable. I sit in a separate area because I find the smell a bit stressful and as with all waiting rooms I find the germ potential mind – blowingly enormous. The GP was my usual begging session – “are you sure there is nothing you can do about my anxiety?” I ended up with hand cream to use as soap so my hands aren’t so dry. This will involve a new hand wash regime, trying to convince myself my hands are clean not using soap. It could be very anxiety provoking. The doctor said the cream had antiseptic qualities so hopefully I can trick myself into thinking my hands are clean.

The biggest of big things was the dentist. I think I may have mentioned a trip a few months ago, well this one was the big one – having a crown fitted. I managed drilling, having a mould made and having a temporary filling cover. As you can imagine I was scared but between the dentist and my mother we made it through. We put Madonna’s greatest hits on the CD player and I just lay back and prayed I would be ok. The good thing about my dentist is she explains everything so I know what is happening step by step and feel comfortable with it. She was gentle, considerate and told me if I wanted to stop any time just let her know. She showed me all the instruments she was going to use and gave me a trial run of what the impression-taking would be like – without the gunge but it did give me an idea of how it would feel in my mouth. She also told me how long everything would take and gave me a running commentary on what was happening at each stage and what would happen next. I also find the music helps. I know Madonna so well that instead of thinking “man, I’ve got someone with a whooping great drill in my mouth”, I concentrate on the words and of course pray. I think the dentist is very difficult for people on the spectrum cos the whole experience is rather overwhelming and overloading with different experiences coming at you one after the other and finding a dentist who understands and has possibly done some homework about autism is vital. When my tooth first started to hurt I wasn’t seeing the dentist I see now. He said it would have to come out but since seeing my parents’ dentist she’s saved the tooth and made the dental experience just a little easier.

To cheer everybody up after thinking about the dentist here is a photo of me – you’ll have to trust me on this because I’m in my fantastic motorbike gear and so unrecognisable! I am 20 and living in Glasgow. I will tell you more about my biking adventures soon.

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