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
1 thought on “Thinking in Riddles”
I always thought you were amazing!!! and I wasn’t wrong – Jackie Simm