Ju Blencowe

I am struggling to find words that can aptly describe what it is like to be a pupil of a herd of horses but I will do my best to try. You see, that’s simply all the horses require of me, an openness to the lessons that they have the wisdom to impart and the generosity to share. When I stand amongst these incredibly insightful, sensitive creatures I am drawn to remembering what they have historically sacrificed in service to the human race, it is beyond comprehension.

This week, I entered a realm that was altogether magical in so far as I had the experience of being chosen, not for a netball team or a talent contest or a job or a campaign, those angsts that can diminish our sense of worth or identity but instead chosen simply to ‘be’. Not for my skills or my abilities or my looks or my status, chosen simply for being ‘me’. Not for what I could contribute or what I could achieve, not for personal gain nor collective wealth, not for what I have or who I used to be for none of that matters to her. You see, she is free from those trappings and shackles that hold us and question our rights to devour the moment purely for its own sake without striving to prove or to sustain or to deliver or succeed. She is a soul who lives in the moment and it is within that moment that I was invited.

Time stands still when  I am  with  them, I neither incessantly count nor struggle for courage, the gremlins that delight in pursuing and chastising are silenced as I stand amongst my friends, friends who use no words, friends who sense and feel and know without moving to hide it, ignore it or fix it. It is here where acceptance is a given either with the nod of a head or the quiet continuation of calmly grazing beside me, it does not need to be overtly demonstrative, it is reflective of those friendships that command nothing in return, that accept us as we are and that remain through seasons of joy and seasons of sorrow.

I now know how it feels to be alongside a creature who encourages and teases out a latent  child who is finding her feet again long after the demarcation lines were blurred by grief and burn out and loss. For it is in this pasture that I heard my own laughter again, not contrived or pressured but laughter for its own sake because that is the only true expression of the emotion that I felt, there in a field, chatting amongst the herd and rabbits and forest greenery to a horse who chose to listen to it and generate a feeling of pleasure and freedom for doing  absolutely nothing.

This is Fleur, she is beautiful and strong and funny and independent and in a field of  clover and buttercups she  chose ‘me’. She led me over a line drawn in the dirt because she knew that without her gentle coaxing I would risk remaining in limbo, caught between the desire to move on and the fear of failing to do so. She nuzzled and cajoled and presented and performed and she led me out of my grey world and into her light. We hugged and we talked and we complimented and leant into one another, sharing secrets that I knew she could keep, that she had respected. And unbeknown to me, in a far corner of the forest undergrowth stood a deer, watching over us, stable and calm and reassured.

When asked if a deer held any symbolic significance to me I was able to tell the therapy leader that the only source of comfort that would ease the mental torment of my mum experiencing dementia was to visit the deer every day, to watch them grazing and to see them leaping. Such was the significance of the deer that I have one in my garden as a memorial to my parents. Only this week I had spoken out loud to my mum asking her for a sign that she was ok and watching over me during a particular period of change and challenge. Yesterday, two days after my equine therapy, we walked with the dog in a Forest area known as the German Cemetery, where war dead lie in restful surroundings. Over in the far left corner we saw a solitary deer, no herd, no company, she watched and waited and when she was ready, as we walked with our dog down a tree lined lane, she ran alongside us, leaping the heathers and clearing the fern. As she overtook us, she stopped in her tracks, turned to look at us, paused a while and then disappeared into the clearing.

There are mysteries in life that we may never understand but I am on a journey that is not only restoring my faith in the universe but equally restoring my faith in myself.

Her name is ‘Fleur’ and she is my friend, a friend of the highest calibre and she is warming my heart from the inside.

 

With Love,

Ju x

 

I don’t quite understand what actually happened to me today, I have no explanation for it nor grasp of the theory behind it, neither did I have a pre- conception of it or expectation from it. One thing I do know is that something happened today and that something was as profound as it was silently reassuring. Today the usual twisted, tumble dryer of a day with its functional challenges, wretched good intentions and calamitous attempts at steering my way through a sensory quagmire evolved into what I can only describe as a rather magical encounter, not with people or frenetic attempts at squeezing my way into a neurotypical shape in order to ‘do’ something social, not with insular painting or writing or playing music or hiding under a blanket playing iPad Bold Moves, not in masking, nor stimming, or tending to my sixty giant sunflowers, but in a rugged, green meadow strewn with buttercups with a backdrop of forestry commission landscape. For it is in this meadow that I was asked by a specialist practitioner to step silently through a gate and to walk alone towards a herd of horses grazing peacefully on the far side. This was Equine Assisted Psychotherapy, a process that would hopefully help me to reengage with life and community in a way which enables me to accept a new way of being and to not feel like a failure anymore. It has been two years since I was a missing person after the death of my mum and I rarely go out or engage with others, this was a big step made even more challenging because I am afraid of horses!

I haven’t done anything on my own for so very long, my wife is my anchor, encourager and safe place and has been since I shattered into a million jagged pieces. But today, today she stood on the sidelines, her smile and the demeanour that tells me she knows that everything will be alright, the tears in her eyes representative of the hope that she holds for change and freedom. And so, after being talked through a ‘body scan’ of relaxation and breathing, I put on my cap to shield my eyes from the sun, stepped through the gate, took one more look back at her and then slowly began to walk. I walked quietly and reflectively, firstly towards a tall, dark brown horse with a shiny coat and muscular girth, handsome and strong and  ………..as I approached him, he lifted his head from his grazing place and looked straight into my heart. I stopped and gently closed my eyes, breathed deeply and nodded to him, he walked over to me, I felt something, an empathy, a sense of truth, an understanding, a meeting of minds, I felt a surge of emotion running through my body. I knew that he had a story to tell. There in the silence of a field something happened, something changed, a white and brown horse with one blue eye and one brown eye siddled up to me, she was edgy, anxious, a little disconcerted, like a mother hen checking out the children, a little skittish, maybe jealous and protective and then another, a chestnut, gentle eyed, calm animal who offered the time of day but was very laid back in demeanour. Within a matter of minutes I found myself encircled by these three beautiful horses, all inquisitive, all vying for a space to see me, no words, no noise, nothing but the tenderness of that moment, their breathing, their ability to look inside my heart. I was not allowed to touch them until signalled to do so and so, I stood as they breathed in my ear, touched my skin, sniffed my hands, paced and watched me, fathoming out the stranger in their midst until gently returning to their grazing. I moved on to a white Spanish horse, he looked at me, approached me and stood alongside me like a loyal friend, his eyes were deep black, like mirrors to my own pain and it’s then that I took a sharp intake of breath that took me by surprise as the tears began to fall, stood in a meadow beside a beautiful creature who looked at me with knowing eyes and understanding, with a wisdom that defied belief. And as I stood, arms down by my side, I whispered to him that my heart had been broken and that I didn’t know where to put my sorrow, this horse moved closer, so close that I could feel his warm breathe as he nestled in to the crook of my neck, wiping away my tears before going back to his grazing. Next came a white Spanish Arabian horse who made no attempt to engage other than looking up to check me out and communicating to me that if I stuck with him I would be safe, he was wise and old fashioned and there was something about him that left me calmer, reassured somehow. I left to approach another brown horse in a cordoned off paddock but could hear a distant voice of the assessor calling my name and gesturing me to stick with the five horses that I had already met. As I made my way back up the meadow, the brown horse who had been first to meet me ventured over, came close to my face, breathed into my neck and licked away the remainder of my tears. The horse who had previously joined me alongside him seemed anxious now, I sensed that I too felt a little fear as the horse nudged me, I respected her space and moved away, back to the Spanish white horse who playfully nibbled at my pocket and nudged me into his side. I had no idea of how time had elapsed and no real desire for my encounter to end, it felt as if I was in the presence of friends and yet not overly pushy friends nor demanding nor expectant friends, simply accepting friends with no demand to perform or succeed or fit in or to prove my value or my worth, I simply felt equal, no higher or lower in status, simply equal. I respected them and they in turn had respected me. We were a herd, they had accepted me. And in their acceptance of me I could feel a deep awareness of the need for me to accept myself. There has been such a sense of loss, such a divorcing from all I once knew, career, grief, mental health, diagnosis of autism almost too late to the party to find a place and a sense of regret that is futile and exhausting. It was truly humbling to find myself stood within a field beside a horse who enabled me to see the extent of my own feelings of failure and as the breeze blew on my face I dared to believe that my life could be changed, that it isn’t too late to be the person I was always meant to be, that I needn’t be defined by a life of misunderstanding.

As I slowly returned to where I had left my wife and the assessor, I looked back several times, trying to keep that image in my mind, this incredibly evocative image of a herd of horses who had briefly allowed me to join them without needing to know why, without words and without touch. When I arrived back I was asked to describe how I had felt about each horse encounter and I shared observations and feelings and reactions. There were tears as I talked about the experience of simply ‘being’, simply breathing in the presence of intelligent, honest creatures that were brimming with integrity and truth, truth tellers, fortune tellers, knowing counsellors.

The assessor then went on to introduce the horses to us. We were utterly amazed at the accuracy in which my own observations and feelings had been reflective of their own stories. My first brown friend, a once three day eventer, now disabled with a spinal problem, fearful of being ridden, no longer accepting of riders or overt contact. He was comfortable with people but any anticipation of being mounted caused distress. He had been targeted for euthanasia and rescued. It was a revelation moment to learn that the horse that I had first been accepted by had been broken too, he had understood my pain because he had pain of his own and the story that I had felt he had to tell has yet to be told. The white and brown mare I felt a maternal pull from had been previously used for breeding, the only one in the herd, last in the pecking order in a herd of 45, bullied and distrusting. The old wise Spanish Arabian horse, the pack leader, head of the herd, the one whom I had felt reassured by, the one with old fashioned wisdom was 24 years old. Each in turn we learned the stories of loss and regenerated life, of breakdown and rescue of being bottom of the pack of being misplaced and disowned and discredited. I had wrongly made the assumption that the horses involved with equine therapy would be chosen for their steady characters their excellence with people, their reliability and their track record and those misconceptions were shamed as we learned that some had only been there for a week, two weeks, two years, each with their own stories to tell. I had been the first person to go into the paddock with one new horse rescued only a week before. I found myself asking, if I had know that these horses were broken, unsure of themselves and distrusting of people, would I have still voluntarily entered that meadow and approached them with such eagerness and trust? Would I have allowed them to invade my personal space, lick my face, breath into my ear? Would I have believed for one moment that their presence in my life could be helpful or effective or life changing? I have prided myself for years on my professional values of anti discrimination and equality but this lesson was a profound one of trust. In seeking to find resolution for my own locked in trauma I had inadvertently found truth and salvation amongst a herd of horses who had themselves been stereotyped, stigmatised and judged for their own unplanned life events. In the eyes of  my new brown horse friend I didn’t see a reflection of the pastures that we stood in, I did in fact see a mirror into my own soul and if I dare to keep looking, perhaps over time we shall find comfort from each other’s stories and permission to take hold of the reigns and to walk on. His name is ‘Fly’ and perhaps, with a little bit of luck we will!

With love, Ju x

I awoke to the sound of a neighbours heeled shoes clippety clopping on the hard driveway, the noise deafened me, she was exchanging pleasantries with another neighbour, talking loudly about the sunshine, laughing, the car door slammed shut, the engine revved and she was gone.  All of those sounds had created a cacophony of audio waves set to a frequency that set my teeth on edge, made my stomach do somersaults and I could still hear them an hour later. I felt detached and alien, bewildered by the capacity to chat freely without twisting my hands into tight shapes. I had woken upside down in the bed after a restless night of dreaming about goldfish attached to my finger tips and the light through the curtain was vivid and strong throwing beams across the room like jagged lasers. It’s three years since my career ended, it has been a profoundly life changing time, I have no ability to relate to the normal stuff now, it feels as if it was somebody else’s life a parallel universe.

Yesterday had been a day of trying hard to engage, not with people, these days I rarely do people, but with the environment. The smell of albumen and raw egg penetrated my head and infiltrated everything I touched and attempts at overcoming that had left me pulling at my hair and screaming with frustration, unable to eat. Every step I took in the house I could hear the crunching of the dust in my head and if caught by the sunlight I could see it resting on my skin, no amount of scratching it off would remove the feeling of sheer antagonism. My only solace was to hide under a blanket or incessantly flick on an iPad game that challenged me to line up four purple hearts  in a row and I tried for two hours without giving up. All I could do was to rock away the stress of trying to function in a world that was not affording me a peace of mind, a peace my mind ached for.

As I sit here now, writing to you, reflecting on Mental Health Awareness Week and wondering if I should be writing something more uplifting and positive, I realise that if I am to retain my integrity and truth I must be real about life and it’s challenges. I am a master of disguise but in a world where people are sharing more openly about their own battles I am less inclined to mask and more encouraged to be honest, I no longer hide behind job titles or status because I have none, my masks have gone.

I can hear a distant high pitched vacuum cleaner from inside someone’s house, the droning traffic from the motorway a mile away, the greenhouse pump from two doors away intermittently making a roaring sound and birdsong mingled with a distant helicopter from the nearby RAF camp. But, I have managed to go out for a ride with my wife and dog today to a local pool where people gather for picnics and family times. I couldn’t walk on the path without shielding my eyes from the litter on the ground that makes me feel like ripping the skin off my own face, I feel it in the pit of my stomach as if smacked by a leather football and I fear falling and having no control over my head being near to it. I can’t look down for fear of seeing litter, I can’t look up for fear of treading on some. Each time my dog goes near to it I shout “oh no, no” it torments me like a goading devil.

And yet, I see a hundred different yellows in the trees and the shadows that dance through my peripheral vision dance to a rhythm that my foot taps repeatedly to on the journey home and there is hope in the nature of things, the predictability of the seasons and the growth that is bursting out of every flower and nest and branch. There is solace in nature, it’s honesty, it’s vulnerability, it’s perpetuating cycles and sureties.

A few days ago I had received a phone call from an unknown number and despite never usually answering I clicked on receive and said “hello”. A woman from an assessment centre, entrusted with my support, says that she needs to visit me and asks if I’m “likely to be violent towards people if anxious”. I feel diminished and my broken spirit wants to tell her that I’ve spent twenty years as a social worker seeking to safeguard vulnerable people and now the word ‘autistic’ renders me stigmatised and stereotyped, misunderstood and wrongly judged but I say nothing, I feel like nothing, in one sentence I have been rendered voiceless and she has never even met me.

Afterwards I hear a fly in the house and I need to bash my head with my hands and draw a letter ‘Y’ and the number ‘6’ in the air again and again until the buzzing stops, my wife texts me from work to remind me to have a drink, I get a glass out of the cupboard and the smell of albumen smacks me around the head again like an angry shadow and the drink is abandoned to tears of frustration and I hide under the blanket thinking of purple hearts  and remembering the relief of draping a sheet over the table as a child and crawling inside for some peace.

I know now that I am autistic, I have known for exactly three months but I have lived the autistic life for fifty six years. Knowing who I am is changing the way that I understand my world but it has done little else to remove the conflicting stimuli, the contradictory messages, the slight of hand that makes just one unpredictable moment engulf my sensory world. The demons still walk by my side, the losses still  outweigh the gains. I have yet to find my freedom and have no idea what to do next as I tentatively enter this new phase of life. Everywhere I look there are debates and discussions on supporting children and evidence of massive shortfalls but as yet I haven’t found a place that will enable me to reengage with life, find a new rhythm, be myself, use my abilities and experiences and gifts for good. I am learning patience and self compassion and cannot believe that I’m actually writing those words down!

I am proud to be autistic, it has been like meeting a lifelong friend for the first time, a friend that has always been there through the rugged years of survival but whose voice was never heard nor engaged with. But we should never underestimate the impact of living differently in a world that picks at your wound like a hungry raptor. We have learned to mask our true selves for the benefit of others and for the safety of surviving a society that presumes we are violent, unfeeling, disengaged human beings when in actual fact we are simply wanting to dress in yellow suits, paint landscapes that reflect the wonders of imaginations untethered and be valued and accepted for our quirky eccentricity our deep sense of wonderment and our resilience to constantly swimming against the tide. We know stuff, given the opportunities we can be world changers.

I survive today in the hope that tomorrow will be less of an assault on my senses and more productive and fulfilling, less of a battle and more of an adventure. I long for adventure, I long for the day when I can reflect on the words of  Najwa Zebian — ‘These mountains that you are carrying, you were only supposed to climb them.’ And to feel as if I have reached the summit of my purpose here on this earth.

Mental Health Awareness Week you have been challenging but through every veil of cloud cover there is always blue sky just waiting to burst through and when it does I shall paint it with unbridled passion to the sound of a perfect symphony, cobalts, ultramarines, manganese and  turquoise, laughing in the face of adversity and standing firm to the promise that it takes both sides to build a bridge. I’m holding out my hands across the water, will you meet me half way with yours?

With Love

Ju x

On Tuesday 2nd April I attended NAHT (National Association of Head Teachers)Girls and Autism Many Voices Conference in London. It was my first conference relating to autism just six weeks post diagnosis aged 56, in fact it was my first formal experience of being in a public place for a whole day since my devastating shut down two years ago .
Historically, in my capacity as social worker/lecturer in social work I had always found such events incredibly challenging; lots of people, unfamiliar places, noise, the sound of what I call ‘layered voices’, bright lights, smells of catering, stifling heat (my particular nemesis), the all consuming irritation with my own clothing, the need to fidget and move in order to regulate my thinking and to be able to engage with conversation, the overwhelming sensory challenges of not touching doors and handles and amidst all of that trying to present as friendly and personable. As I reflect back now it is no wonder that those experiences were absolutely exhausting and I would always leave with a sense of having failed in some way.
But, this time it was different, this time I walked in with trusted friends, my safe people and this time the emancipatory experience of having been diagnosed as autistic by it’s very nature enabled me to own the space, express my truth and to find that I was no longer existing within a self contained bubble of preservation but actively listening in an environment that although still enormously challenging was overridden by the presence of people who understood.
Life has been a battle ground of unimaginable, exhausting survival tactics that have bruised and sucked the life blood from my veins at times and throughout my career in social work it was not only traversing the most undulating landscape in order to keep myself employed and competent but also fighting for the rights and choices and dignity of others who were deemed as vulnerable and battling their own inequalities and trauma. I was firefighting with life in order to earn my living and to be of value.

On this day, the Many Voices conference felt different than all of those that had gone before. It was feisty, compelling, invigorating and enlightening. I listened to the passionate war cry of mothers who would lay down their lives for their children and in many ways already have. I heard the empathic voices of solidarity and commerardary of shared vision and collective responsibility and I broke my heart listening to the voices of young women whose recent pain resonated with the pain of an older sister who, forty years ago had experienced similar losses and indignities. I cried unashamedly for them and for myself. And, as I listened to those brave, strong, creative voices, something swelled inside of me and there was a call to battle, I felt my feet rising, my energy growing, my desire to speak out overflowing in the name of diversity and resilience, an overwhelming feeling of alignment.
How can this be? How can autistic young people in 2019 still be being ostracised, pilloried by peers and punished for their beautiful uniqueness in a society that boasts of anti discriminatory policies and practices that are simply rhetoric at ground level, wasted legislative change that we have fought for decades to see come to fruition halted by lack of commitment to enforce, respect and initiate. I was left wondering just how many hundreds of students that I have taught applied law to over ten years on university campuses are still fighting those battles, where I have desperately tried to engage people with the realities of inequality and ignorance of tokenism and platitudes that bare no authenticity if not lived from the inside. How many students are fighting for those truths on behalf of the people they are entrusted to serve now? We celebrate paper documents that are emblazoned with good practice intentions and yet daily, since joining in on the end of this vibrant, rallying community of amazing people, I hear stories of horrendous, disproportionate, inappropriate, unjust and ignorant punishment of children and families who are living a nightmare.
Three years ago my lovely mum passed away in my arms. Losing her signified the end of a ten year period of battling my way through bureaucracy, ageism and callous perspectives of people living with dementia. We won every battle but it almost cost me my life. I lost my best friend, my career and my hope and it has taken three years to recover. I didn’t think that I had another battle left in me until Tuesday, as I sat in my seat at this conference and embraced an overwhelming sense of belonging of value of relevance of currency and of purpose.
For those who say that being diagnosed as autistic in your late fifties is irrelevant and pointless, a waste of resources, I would like to offer another perspective. The day I was told was the day my life truly began, it was in fact the first day that I had woken without being in a war zone, I could breath, I could forgive myself and begin the journey of forgiving the ignorance of those who had historically, collectively incarcerated me in psychological chains for the whole of my childhood, adolescence, 20’s, 30’s, 40’s and 50’s. It’s not a call for sympathy here, in spite of those chains I gnawed through them and continued to live my life but always with a veneer of pretence and subservience to a neurotypical system that smiled on the outside and yet grimaced at my difference on the inside.
On Tuesday I sat amongst friends, I rocked and I stimmed and I was able to concentrate and absorb and engage and celebrate having rediscovered my purpose and instead of exhaustion there has been vigour and strength and a newness of spirit in the sudden realisation that I do actually have a battle left inside of me it is a battle to ensure that the younger people, the forgotten older people who are wonderfully and creatively made are successful in their (our) mission to experience the right to be able to dream to achieve and to co exist without the arrogance of rejection or diminished self esteem.
I am so deeply grateful to know that I am autistic but I can’t just sit back and get my knitting out, rocking my way into oblivion! Not whilst there is still work to be done in the name of equality.

With love, Ju

It was such a privilege to speak on the BBC Radio London Saturday Breakfast Show with my friends Carrie and David Grant alongside Francesca Happe, Neuroscientist  and Sarah-Jane Critchley, educator in autism. It’s surreal being around people who know about autism because as a newly diagnosed woman I’m like a sponge wanting to soak it all up, I know so little but have experienced so much. I’m sure as the theoretical knowledge develops so too will my self awareness and resulting strategies for living well with autism. Some folks have asked me for more information about my own journey to diagnosis since the show was aired so I thought I would do a blog page including some of the prep that I did for the show. Oh and by the way, before I went on the show I had rehearsed, researched and focused entirely upon that interview for at least 30 hours, practiced using a phone and counted repeatedly inside my head the number of areas I was going to chat about. Only then could I go full pelt into speaking mode. I’ve decided that if I am going to be a useful voice in the autism world then I have to be honest about the realities attached to that truth. Here goes………..hold on…….it’s like sailing on an open sea sometimes!

When did you first think that you might be autistic?

I can honestly say that I didn’t give it a thought, it was my wife Jayne who started to piece the jigsaw together. I had become really unwell after my mum died, I had cared for her for ten years with dementia and Parkinson’s. I had lost my career as a teaching fellow in social work and had been declared a missing person in London for a brief time. So, in effect, everything that I had held precious, that had given my life shape and purpose had been stripped away. I had always struggled with life since childhood and had been given a string of diagnoses over the years but I had just pushed through regardless surviving one crisis after another, overcompensating, working more hours, studying for more degrees, achieving higher, living off adrenalin and sheer will power, crashing, recovering and doing it all over again. Life was what I would now describe as ‘chaotically successful’ but when the wheel came off metaphorically speaking, I kind of crashed into a brick wall and a strange silence settled, it was during the recovery from that crisis that Jayne began to seriously consider the possibility of my being autistic.

Why? What were the things you related to that were autistic traits?

It was observations that Jayne had made over years of knowing me such as; a heightened sensory sensitivity. For example, I would describe the colour of a tree with such intricacy and detail that was beyond her experience, see ten shades of green where she saw only one. Or I would listen to a piece of music and express a depth of empathy or visual interpretation that was surpassing her own. Then she watched the Chris Packham documentary ‘Aspergers and Me’ and Chris was talking about the need for routine and having what he described as a ‘rigorously controlled environment’ to retreat to in order to cope with life. My own safe place had been altered beyond recognition when my mum got sick and we could experience up to thirty different carers in one month coming into our home at all different times of the day, that level of invasion of privacy had been devastating and one that had demolished the quiet sedate life that mum and I had lived prior to that. I can honestly say that if my wife hadn’t come along when she did with her beautiful, gentle spirit and devotion I dare not even begin to wonder what might have happened to us.

I used to think that everyone felt the same as me. That shopping in a supermarket was overwhelming for everybody because of the sounds of the freezers buzzing, the piped music playing, the hubbub of conversation, the rustling of people’s  clothing (especially rain coats in wet weather). I thought that everybody struggled with adjusting to the different smells, the fish counter, the meat, the flowers. Or got headaches from the beeping tills, squeaky floors and strip lighting, all leaving me utterly bewildered.

Jayne quietly continued to do her homework, not saying anything to me, mindful of the plethora of diagnoses I had had before, incase she was wrong. She looked at the Tania Marshall descriptors of how autism can be expressed in girls and she was astounded at how much of me she saw in them. For example; the need for isolation, history of misdiagnosis, struggles with social engagement, intense empathy, using different personas in public to ‘fit in’. This was the point when we had out first conversation about the possibility of my being autistic.

What was getting your diagnosis like for you? What does it mean to your view on life?

Getting my diagnosis was bitter sweet. I initially felt sad and regretful at having had to bamboozle my way through life trying to reconcile my difference with the world and twist myself into a shape that fit. I felt sad that I had spent a lot of my life in and out of psychiatric services, some of them less than ideal, some of them dreadful. And therefore, on top of already existing challenges had also gathered trauma and PTS along the way too. But, on the other hand I felt utterly liberated, as if my callamatous life could now be reinvented and the person I was always meant to be could come out. It was giving me permission to be the creative, quirky artist who had spent life trying to wear the right suit and talk the right talk.

I would be lying if I said that life hadn’t been without its pain but I like the old addage; ‘Sometimes you have to lose who you were to find out who you are’ and the things that we hide behind; careers, keeping stupidly busy, aren’t always healthy props to lean on and as I learned, can be lost within an instant anyway. My view on life has turned from grey to technicolour now because I no longer have to temper my imagination to try to be someone else. Two years ago I was reduced to a shell of a person, lost and blown away by grief but it is as if through that loss I have been left with the most beautiful gift. I have a second chance now to breathe in and out to the tune in my own head rather than to a cover version of somebody else’s song.

Do you wish that you had been diagnosed sooner?

If I could turn the clocks back to a time when I was driven through the gates of an adult psychiatric hospital as a child because there weren’t any services for children who couldn’t converse or who collected stones rather than played with their friends then yes! I would have lived a different life, followed different dreams and known that I wasn’t alone. But, I don’t regret surviving those experiences and feel that they have perhaps afforded me the capacity for a greater empathy. It formed the basis of why I went into social work and wanted to support older people considered as vulnerable and I don’t regret a day of that. Nevertheless, it was still an infringement of my right to know and to be myself in a world that was just so very alien.

I remember one professional once saying to me; “the trouble with you is that you need to learn to harness your imagination, get a grip on reality, stop thinking in riddles and start living your life like everyone else”. The reality is that in trying to live life like everyone else I never truly found out who I was meant to be.

Does it change the way you see yourself now?

Completely! I can look in a mirror now and doff my cap to the woman who has managed to survive 56 years as an undiagnosed autistic woman in a neurotypical world, a hostile world that gave me labels that were inaccurate and stigmatising and as a result I have lived my life feeling ashamed and tarnished by those flippant profiles. Now it is like knowing my eyes are brown or my feet are size eight, knowing I am autistic has given me permission to paint from an open pallet now rather than painting by numbers.

Why do you think that women aren’t being diagnosed earlier?

Its too easy to offer up alternatives, to see the symptoms of autistic women struggling with stress, loss, exhaustion, depression and to put a plaster on those rather than to explore the catalyst for those struggles in the first place. Trying to live well in a world that batters you with sensory challenges will inevitably result in behaviours and presentations that are complex. Too often the therapeutic responses to those complexities are; “How do we control this?” rather than “What is the root cause of this?” It’s far too easy to fit people’s presenting needs into an existing prescriptive box than to step out on a limb and challenge the status quo. I spent twenty years in social work, half of that in higher education, autism wasn’t a priority, if there at all! It was tagged on to a module on mental health or learning disability. I have to ask myself now, was that sufficiently preparing potential practitioners for life working alongside vulnerable people in crisis?

Women are expected to cope so we buckle down and get on with it and it isn’t until crisis comes that alarm bells start ringing and even then, it depends on who is listening when they do as to whether or not women are afforded the right to assessment. I was fortunate to have a very supportive GP who listened and acted upon our thoughts. Surely a great deal of trauma, time, money and resources could be saved if autism was considered as a matter of course rather than patients having to self diagnose and as in our case, self fund our assessment. I was a typical revolving door patient and I’m just left wondering if that might have been different.

What would you like the public to know about the way autism presents in you?

I am newly diagnosed and am learning something new each day about who I am. What I can say is that life is exhausting at times. I have endless rehearsals before attending any social event and overwhelming anxiety in new places, crowds, public transport, shops, toilets, passing bins, walking past rubbish in the street but on the other hand I can look at a leaf and see the digestive system of the bug that feeds off of it!

I am reliable to a fault. If I’m entrusted to do something I’ll do it thoroughly and with devotion but that will become the only thing that I can consentrate upon until it’s done but it’ll be done well.

I can walk onto a stage to speak in public or to perform a piece of music and I feel at home and free but I need help from someone I trust to get me there, help me to become accustomed to the environment and show me where the toilet is! Someone to be present, someone that will understand my need to pace up and down and to incessantly count the right angles and contours of my surroundings.

I find social chit chat excruciatingly painful and awkward, I can’t appreciate it’s value or its purpose and it ties me in knots. On the other hand I have a strange filter and I’ll tell you you look tired before I ask you your name! In a conversation I shall remember every detail and be really interested to find out more and to visualise the stories you share with me. If you tell me about a place I might spend a week or two after we have met learning everything there is to learn about it. I don’t want to go there, I just get hooked onto things that can hold my interest for long periods of time.

I need periods of reclusivity but enjoy company, although I won’t always be able to engage actively with conversation in groups, because I am quiet, it doesn’t mean I’m not interested, I’m absorbing what you say but needing to process its content by looking at the floor or fiddling with my buttons.

I struggle with irony but love slapstick. If somebody teases me I will take that to heart but if I see something visually funny I will laugh until my belly aches, possibly for days!

I can spend twenty hours being absorbed in an activity such as painting or researching a topic of interest forgetting to eat, drink, sleep, go to the toilet and yet be completely floored by an unexpected knock at the door that renders me curled up behind the sofa shouting “I can’t do it”.

I can pull at my hair and punch my own face at the constant sound of a dripping tap but equally, in contrast, can recover and spend several hours quietly fixing it and not give up until it’s done.

I can read the atmosphere in a room, that can be a curse or a blessing depending upon where I am !! But as someone who hates conflict, that will inevitably lead to me vacating a place where discord is present or retreating inside of myself to stay safe.

I say sorry a lot, even when I haven’t done anything to be sorry about!

I have endless patience with other people’s pain to the extent of physically feeling it. But if I’m asked to do something without having had the chance to prepare I can feel such distress that is, at the time, terrifying and immobilising.

I recently had the term ‘Intolerance of uncertainty’ explained to me. This is being overwhelmed by the potential for stress. On the other hand, if amongst close friends who I feel safe with there can be all manner of distractions and sensory things going on, kids playing, dogs barking, music blaring and I am the happiest I can be because it’s not unpredictable and there is a strange security within that.

I can smell the colour blue and I can hear the dust in my house. The sound of the motorway, a few miles from my house can sometimes override my capacity to hear your voice sitting next to me.

I am constantly counting the space around my feet, the things in my pocket, my bag, my surroundings and whilst doing that my hands are reflecting that counting. I will be doing this as I watch tv, listen to music, read a book. The only time I have respite from this is whilst sleeping or playing music.

What of the future?

These are interesting times. The term ‘late diagnosis’ is one which fills me with hope and peace and self reconciliation. I am so fortunate to know now and have opportunity to grow and to embrace a three dimensional life. I’ve stopped trying to punish myself for being different and started to embrace that difference. New tribe, new breath, new experiences, new opportunities. I’m thankful, very thankful.

With love,Ju x

 

 

 

 

I can’t remember a time when I didn’t concern myself with the infinity of space or the concept of eternity, these are elements of life that have travelled with me through time, since I was born. Neither can I recall a moment in my life when I haven’t been overwhelmed by the suffering of others or crippled with inertia at cruelty toward animals, or when I haven’t wondered about wars and treachery and conspiracy and corruption. Nor is there a time in my childhood when the wilting of a picked flower or a snapped twig from a tree or a random pebble found in my shoe wasn’t mourned for, worried about and set aside with gentle care as if burying a friend.

I remember the liberation at feeling breeze on my face and the taste of the salty sea air; spending my pocket money on the discarded torn, one eyed stuffed creatures thrown into bargain bins in charity shops that smelt of musty coats and lavender, delighting in the birdsong of the robin and the lark and lying down in the grass with a cabbage leaf over my face to see what a caterpillars world looked like. I felt a joy beyond human words at touching the colour of the sky that was blue and clear with streaks of white and the joy of burying my face into the tiny body of a purring kitten whose heart raced like the treadle of mums sewing machine, a tiny creature who understood my world and chose to dwell inside it with me. And, if I close my eyes, I can still see the intricate patterns on dresses worn by ageing aunts, their texture, design and contours and when I see those patterns now I smell the coal fire again and hear the sparks crackling. I remember hiding under the table at social events, talking through my teddy, running away from people in spectacles, wishing I could take flight like the birds and soar above the noise of incessant conversation, smoky pubs and people who told jokes that I didn’t find funny, people who laughed at my awkward gait and big feet and confidently told my parents that one day I would ‘get over’ my shyness.

I remember coming home from school and looking for my beloved cat who always met me in the street and finding out that he had been poorly, taken to the vets and put to sleep, my best friend, gone in a whisper without me being there to hold him, to say goodbye, and I gasped for air as if my world had ended, looking for his fur on the chair where he had sat that morning, collecting it in a jar and carrying it in my pocket. And years later, I would carry the ashes of my beautiful border collie to work in my rucksack, reassured that the one who had known me best was there beside me and I was looking after her just as she had always looked after me.

And then, as the years moved on, those memories of solitude and peacefulness and innocence of sensory delights were gone, overtaken by the rain clouds of winter and the ignorance of life, destabilised by adolescence and the expectation of ‘maturity’ and those anxieties from fallen petals were a distant thing as life crashed and banged and walloped its way into my psyche like a charabanc of frantic people skidding off course, bumping and bruising and smashing it’s way through pathways strewn with broken glass and noxious debris. Noises got louder, voices raised, the faces of strangers became contorted and hung like gargoyles on fence posts and garden gates and even a walk outside was devoid of its joy and beauty.I remember the etched lines of judgement, the morally superior and the effortlessly sublime all wrapped up in teenage angst and mystery. Listening to peers, comfortably linking arms and talking excitedly about their favourite bands, their romantic conquests, mirroring their focus, their expressive, vibrant eyes and their energy for each other as I snook away to listen to obscure pieces of music that made me weep and see the colour of orphans eyes, in the notes that swept me away to a land that had no time for chatter but that lost itself in a hope for a better world, a kinder world, a world that embraced uniqueness with gratitude rather than indifference or with a celebratory embrace rather than an ironic grin.

I can hear the banging of the doors now, doors that represent corridors of silence, loss of truth, identity and liberty. Corridors that told me that I was the wrong shape, corridors that told me that I had to conform, try harder, stop thinking, stop feeling, stop believing for better, corridors that told me that my esoteric ideology was indicative of ‘oddity’, my aloofness symptomatic of a disturbed mind, my need for creative expression an excuse for opting out of reality and my overwhelming anxiety at the world around me futile and hopeless, unless treated with sedatives and mind altering ‘therapeutic interventions’ with a blind eye turned to contraindications for the rest of my sorry, likely short lived existence. Crash, bang, wallop……….falling under the lights, the stresses of life, getting sent to places of ‘safety’ that were never safe at all, walloped with medication that rendered my spirit dried up and unrecognisable, morphed into someone else, anyone else other than my own truth. Subtly manipulated, moulded into an eclectic mix of ‘otherness’ that rendered me sufficiently altered to ‘fit in’ and yet far enough removed to no longer recognise my own face, the face of reluctance and disengagement, the face of an autistic child .

Well, I climbed out of those corridors, on every single occasion I climbed out, ran faster, sang louder, painted bigger, studied harder, achieved more, scaled greater career ladders, proved my worth, made my way, crashed, banged, walloped and did it all over again, year in year out. Crawling on my belly to the tune of an unrecognisable song, convincing myself that my own song was misguided and quietened for my own sake, humming it under my breath as a secret mantra, hidden, stifled, stilled. I was “Ju the cleaner, Ju the glue factory worker, Ju the artist, Ju the painter, Ju the musician, Ju the student, Ju the social worker, Ju the senior practitioner, Ju the lecturer, Ju the teaching fellow, Ju the carer, Ju the bereaved daughter, Ju…………the missing person”. I had always been a missing person.

So, as we near International Women’s Day 2019, I find myself asking how many more women have spent their lives battle ready, beaten down by misdiagnosis, medical intervention and the message that tells us that our ‘difference’ is a problem needing resolution? How many more women have lived and died and not known that their uniqueness was a gift to the world that chastised them? How many more women have left us not having told their stories, shared their wonders, lifted our spirits with inspirational contributions? How many of us have quietened the dance inside us and respectfully allowed society to bind our own hands and feet in the name of ‘normal’. I doff my cap to those women now because I am one of the lucky ones.

I close my eyes today and I focus on the fading silhouettes, the beautiful profiles of those women who have gone before us, those who have trodden corridors of silence, those who have withdrawn, battle worn, those who have protested and rocked and spiralled and faded without having had anyone truly listen to their stories. Well…….. I’m listening now!. And, if I reach out, slowly, tentatively, I can embrace them all in a whisper, the songs of angels unawares. Listen with me to the unique voices of wisdom, of humour, of collective empathy of stealth and resilience, of misunderstanding, of disbelief and of solitude. Close your eyes and see the lines on the faces of those who have been to this earth, this incredible experience of life and breath with the privilege of smelling the scent of the colours and tasting one’s own tears. Come with me my friend, to a place that will today choose to acknowledge those of us who have gone before and left us without having ever known the freedom of truth. Come with me, let’s walk together through places that make us feel lesser, hurt deeper, try harder, fight stronger because as we hold tight to one another we shall inadvertently be passing the fading silhouettes of those who have gone before us and we shall be stronger for it. Come with me, hold my hand, let me allow you in, offer me the privilege of accepting our shared truth, our difference, our diversity and our rainbow, for with each collective battle we shall be standing alongside those who never knew their own strength. Let me stand beside you when our darkness comes and run with you when our laughter rattles walls and brings down barriers. I close my eyes and I hear the ones who have gone before us, shouting us on, see them waving their hands on the sidelines and telling us to keep running, keep believing for better, keep standing strong, keep kicking back, keep refusing untruths, myths, misdiagnoses, character bashing, energy sapping shortcuts and rat runs that lead us up blind alleys and lock us into dead spaces in the name of bureaucracy, funding, assumptive, pre-conceptive, stereotypical labelling and instead, let’s offer up a rainbow coloured pole vault to the memory of lost women that gives us the stamina, energy and pure will power to traverse the highest line of resistance in the pursuit of our right to breathe and dance to the unique tune in our own heads.

Join me in remembering autistic women everywhere who never got to feel the colour blue.

With love,
Ju

It is this time of year when the memories of being broken come flooding back and respectfully I acknowledge them and can now gently embrace them as valuable jewels in my life. In a few weeks time it will be three years since my mum died, two years since I went missing, since walking to London for Missing People, a year since going into reclusive mode and starting to write my book, a year since being unable to walk, two months since foot surgery and a two weeks since receiving a formal diagnosis of autism.

How life can change in an instant. If you had met me several years ago I would have presented to you as a completely different person. My job title was Teaching Fellow at a very well respected University. I had a beautiful room in the Social Science and Public Policy Department and taught students who were studying for a career in social work both MA and BA and post qualified practitioners who were studying for a higher professional qualification. I was a member of the Higher Education Academy, I loved applied law and safeguarding practices and grabbed every opportunity for teaching them. It hadn’t been an easy journey and I would on occasion sit in my room, looking out over the leafy campus and wonder how on earth I had managed to achieve that status, prior to that I had worked as a Senior Lecturer in a city University that buzzed with energy and vibrancy and adrenalin.

I had left school in the back of an ambulance with no qualifications, I had spent the majority of my teenage years in and out of adult psychiatric care because children’s services were non existent and I had been told that it was unlikely that I would ever make my twenty first birthday. It had been a tough often devastating adolescence and I had witnessed things that no child should have been privy to, experienced abuses inside the walls of places that should have been protecting me. It had been a journey that had taken me to so many different places, I was a cleaner in a faith community in Wales, I worked in a glue factory, I became an arts graduate, a painter, musician, church going kid who was asked to leave for coming out as gay. I was often in a whirlpool of crisis, propping myself up with untold dangers, burying friends who left this earth too soon. My dad died when I was in my late twenties and it was that pivotal moment that changed me, made me apply myself with such force to prove my worth, to achieving more than others had long expected. I left my beloved arts and began to study. After years of practicing within a profession that I loved, I was given the privileged position of teaching at a level that was far beyond what I had ever dreamed possible. I was the kid who needed social workers and I had some mighty fine ones and some really terrible ones but I never thought it possible that one day I should spend my days in a lecture theatre encouraging and building others in the pursuit of their dreams or in tutorials listening to the doubts and challenges of mature students sacrificing everything to return to education.

Just as many women work and juggle family life and other demands, I was a carer too. My life was embedded within academia and looking after my mum who had dementia and Parkinson’s disease. Life was rich and full and busy and funny and challenging and all was well in our household. I enjoyed a generous salary and quality of life and pushed through each day until I eventually began to unravel. One of my biggest challenges was trying to manage the ideology and good practice that was embedded into my psyche alongside the ‘mish mash’ pothole of an experience that community care provided us with at home. It was a diverse and complex melting pot of excellence and horror, of wonderful kindness and ugly, judgemental otherness. It was at times simply heartbreaking and we fought and won many battles that cost us greatly. By now I was delivering a lecture in the morning and then lying, curled up on the floor of my university room, holding my head and trying to find some energy to engage with life for the afternoon, giving out and giving out to others, being the class clown and forgetting to top up myself again.

It has been a very cathartic time, writing my book and it is nearing completion now. Because for me there is no other way of making sense of what happens to us without the tools of writing and music and painting. I don’t know why I was afforded the grace of being found in London and when I think back now to that solitary figure, sat on a bench, tired, hungry, hearing the drone of the London traffic, clutching my mum’s lilac cardigan, I feel only sadness. When I think back to sitting in a doorway with a well dressed woman shoving the door into my back as she opened it to tell me to clear off because ‘decent people use this place’ and I couldn’t even look her in the eye when I whispered the word “sorry” and walked away. I had walked so far that when I was found the soles of my shoes literally fell off, the rubber casings disintegrated on the bathroom floor and I stepped out of them as if symbolically levitating away from the symbols of pain. That Achilles heel has stayed with me since as a close reminder of that pilgrimage, it was the last frontier, operated on in December. As a missing person I had never hurt so much in my entire life. I had never cried so many tears, felt such aloneness, had so little desire for anything. I couldn’t even read a line in a book let alone write articles, exam papers, law lectures. I was faceless, like the child sitting in a psychiatric ward wanting my mum.

“In my dreams, I see your face, walk with you, hold you safe. I close my eyes, I think of you, until the day I see you again”….I swear to God that every time I hear those words of The Missing People Choir I am right back there in that doorway, rocking and wishing that I could trust someone to help me and yet being so paranoid that I was in terrible trouble for having left in the first place. How could I ever not reach out my hands to the Missing People charity when they did just that for me? I will be forever indebted to their generosity and to the kindness of Amanda Holden who helped me stop running.

Time does heal. It has taken three years to recover but it does heal. And, as I embrace the slow rehab of walking again and rebuilding the wasted muscle from not using my leg, it has a strange correlation, you can’t run before you can walk. Rebuilding emotionally has been equally as important, learning to strengthen emotions, harness good, healthy self care, utilise the help and support of dear friends and loved ones. It has been three years since I have worked, engaged with society on a consistent level but it’s been a crucial time for recovery, one that has ensured that recovery is permanent and protected. I am no doubt stronger than I have ever been, more resilient, more self aware, more eager to engage with life in its truest sense. I may not have any money but I am rich.

Two weeks ago, I was fortunate to be able to spend time at a specialist centre for autism in Kent where, over recent months, the records and reports and history and trauma of life and all of the calamitous experiences had been gently and carefully and respectfully teased out, explored and acknowledged. And finally, aged 56 years old I was told formally that I am and always have been autistic. Within that moment I heard every slamming door in every hospital ward, every screaming echo in corridors of silence, every negative, misdiagnosed, sedated year of stigma and lost youth and my life made sense. I was referred to as resilient, strong, positive, creative, unique and a survivor and I cannot find words that fully express how liberating and endorsing that is. I only wish my dear parents were here to know that I was always meant to be different.

We couldn’t have done this without the love and support of our friends. I want to publicly thank Carrie and David Grant for holding us, guiding us and welcoming us into their tribe. Through those dark Missing days, before and after, they have simply loved us and now they continue to help us to understand what autism means and the beauty of its revelation.

This week, myself and my wife Jayne went back to the grounds of the old hospital and although in the main it no longer stands, amongst the new, luxury apartments built from the old asylum ruins are the same trees, the odd brick and a section of old railings that used to form the perimeter fence around the hospital. As a child patient I was required to dress in over sized overalls, on a busy main road and paint those railings in the name of Occupational Therapy. We were called ‘nutters’ and other words that I would never choose to repeat and we had rotten fruit thrown at us from neighbouring houses. I found those remaining fences, hidden under years of growth and debris and almost forty years to the day I could still see the layer of paint that had been mine. I’m not afraid of nor owned by those memories any more. I have a brick from the old hospital on my window sill, pine cones from an old tree in my fireplace and a photograph of my railings to remind me that no matter how lost we feel, how misunderstood we become, underneath all of the veneer our true identity holds fast to the hope of one day being allowed to show itself and to be free. I shall always remember the people I counted as my friends who never had the luxury of feeling that freedom.

My name is Ju and I am autistic and I shall spend the rest of my creative, quirky, ‘dance as if no one is watching’ gift of a life embracing just that.

To everyone who has been part of my story, thank you.

With love,

Ju