Starting Monday 20th May, I will be focusing my social media pages on autism in women and girls for a whole two week campaign.
“The Unseen Autistic” will tell stories written by autistic women, autistic girls and parents of those who have spent years trying to fight a failing healthcare system. We will be looking at mental health, eating disorders, education and the famous diagnosis battle.
To start the week off I have the amazing story of C. At the age of 41, C received her diagnosis only 4 months ago. In her story she talks about her life and pivotal points that helped her, failed her and how she, like most others in the world, has also enjoyed moments of pure magic. Thank you so much for taking the time to put your life into words C. Here is her story…
Despite only being diagnosed at the age of 41 my earliest memory is of having a meltdown.
I was at my small nursery school and I was three years of age. The Church hall where it was held had just had a new heater installed and the noise it made cut through my head like a knife. The pain was unbearable and my only protection from the pain was my beloved Grandmother who, being rather ahead of the times, always had a pair of earmuffs in her bag. However this time the noise was too persistent and the ear muffs did little to reduce the sensory explosion in my head. That was the last time I went to that nursery school despite several attempts to coax me back in with the promise of smarties (only orange and green ones) or a new toy.
I was an only child and my “shyness” was always put down to that in my early years and family would always comment “she is painfully shy but once she starts talking about what she wants to, she won’t stop!”
Primary school was as much of a success as post-heater nursery. In the 1980s there was a spilt year entry and I can remember the frosty morning of my first day clearly. There were other children in my class but I didn’t have any desire to play shops or dressing up. Instead I remember observing from the book corner where I was able to watch with fascination at the children pretending to be adults.
Every morning I would be dropped at the door of the classroom and scream. The reason for this I can’t pinpoint although the feeling of fear and sickness as I approached the classroom I can remember as if it was yesterday.
As the term progressed the amount of time I was expected to stay lengthened and this made my anxiety even worse. The smell and noise of the dining room and the unfamiliar faces of the lunchtime staff resulted in me hiding in the toilet refusing to come out or trying to run away. This then escalated to refusing to leave the house in the morning or I would become so anxious that I would be physically sick meaning that I didn’t have to go to school that day.
One afternoon in April my parents came to collect me and talk to the teacher. Miss Bishop was a friendly lady close to retirement who smelt of roses. By this stage we had an understanding that I would eat my lunch in the classroom and help her tidy the classroom.
Whether she had noticed that one of my anxieties was that things got out of place during the course of the morning I don’t know but either way I was happy to go along with this arrangement on those days I made it into school.
I don’t know what was said at this meeting but the outcome was probably one of the most positive things that ever happened. I changed school. No longer was I expected to attend a large outer London primary school with 30 children and three classes per year group but instead a small independent girls school with less than 200 girls from 4-16.
The school was four large Victorian villlas. This gave an immediate homely feel to the school and I remember a reduction in my anxiety when walking into a classroom which was a homely environment with 8 other girls and two adults. I found the curriculum was more accessible which I later learnt was a Montessori curriculum. (I will leave my thoughts on a Montessori approach to educating children out because I could go on for a long time.) Whilst I was happier than at my previous school, there were still struggles. This didn’t go un-noticed by my teachers and at age 6 I was referred to a paediatrician for assessment. I had weekly physio and occupational therapy at my local hospital as well as assessments in school. At the start of my final year in kindergarten (year 2) I was diagnosed with dyslexia, speech and language delay and a Visio spacial disorder (later know as dyspraxia and now developmental co-ordination disorder). The report also concluded that if I was a boy they would be diagnosing Asperger Syndrome.
I ended up spending an extra year in the kindergarten and looking back I thrived on the familiarity of the environment and did make progress with my reading and writing although I still found other children to be an enigma and was searching for something that could ensure that I had an excuse not to socialise.
My move to the Junior School (the house next door) was very stressful and it took a term for me to manage whole days in my new class. It was a year that would change my life and give me my excuse not to be sociable. My form mistress was a stern but kind lady who played the piano. She used to accompany music lessons and hymn practice as well as play in assembly. Assembly was one of those daunting events and even though it happened every day it didn’t get any easier. A solution was that I sat next to my teacher at the piano. Immediately I was hooked. She played the moonlight sonata and that was it, I needed to learn to the piano.
It was decided I should learn outside school so not to get behind with my school work. I had a teacher who came to the house and I loved every minute of my lessons and played every time I had a spare minute. Despite my poor co-ordination the piano made sense to me. I could memorise the patterns of the notes easily in my head and teach them to my fingers. After two terms of tuition I took my grade one and passed with a high distinction.
My music gave me a place to hide as well as giving me a connection with peers even if it was them politely commenting on a piece they had heard me perform in assembly. By the time I was 11 I had taken my grade 8 piano, would accompany the school choirs and woke up in the early hours to memorise Mozart Sonatas. At a time when most children were obsessed with Kylie and Jason I had Mozart posters on my wall.
Music had given me a reason for being, an excuse not to be sociable and if I had to be sociable, a topic to talk about.
The transition to senior school was not easy. The gap between myself and my peers felt larger and I was increasingly aware of the differences. Looking back some of the differences were self inflicted and a coping mechanism. If I isolated others then they would be less likely to be sociable with me.
On a day to day basis I struggled with organisation and having to have a different teacher for each lesson. Waiting between lessons was anxiety inducing, I frantically tried to prepare myself for what each teacher would be like, what mood they would be in, if they would be wearing a strong perfume (i don’t like certain smells).
Then there was the dreaded adolescence. This combined itself with my mother becoming terminally ill, although I managed and still managed to this day to keep a distance from that emotion. My coping mechanism, and when I heard the words that she was terminally ill, was to almost erase her from my mind and cope. Reading this back sounds incredibly cold and callous. I am a loving person but emotions of allsorts are difficult for me to experience and I guess you just have to cope. The practical challenges of being a teenage girl were far more difficult however for me to manage.
The onset of period for any girl is a difficult juggling act however the sensory side of it for me was simply awful. Despite knowing the facts about periods the reality was something different. I had miss processed some of the facts and was absolutely scared that I would be bleeding to death. This might seem dramatic but my 13-year-old self it was a very real possibility. The sensory side was the worst. I like many others with autism have sensory processing dysfunction, I can experience the most agonising pain and hardly flinch, but a tiny cramp can seem intense. Whilst I have been blessed with very few period pains over the years, to me the slightest niggle can be quite debilitating.
Finding sanitary products that were comfortable was also a major challenge and can still be today. What is okay sometimes from a sensory perspective doesn’t necessarily always happen to be okay. I think it is very easy for people to say, “but it was okay last week?” Yes, but this week my brain is wired differently and it isn’t my response.
My teenage years were rather quiet without the usual need for socialisation and I saw everything in black and white so drinking and smoking were wrong so I didn’t do it and was openly critical of those who did. I was fortunate in being protected by the cocoon that was my tiny school during these years and whilst the schools somewhat Victorian values were outdated for many, for me they were just perfect.
GCSEs loomed large for several years prior to their arrival. First there was the stress of options. I don’t like options and the only subject I wanted to take was music so the rest were rather insignificant as far as I was concerned. The biggest obstacle for GCSEs was the extreme anxiety I experienced at the mere word of exam. Once the exam was underway however there was a sense security. Exams by their very nature are formatted with clear guidelines and don’t require any communication with another human being and I liked that.
I had been given 20% extra time in every examination owing to my dyslexia and dyspraxia. Whilst answering the questions was often quite possible, for me the difficulty came with timing and having to answer the questions in the given time. During two years of GCSE course I was fortunate enough to have a TA who helped me with learning techniques, especially focusing on the exam rather than the ceiling!
Very soon it was time to sit the actual examinations. I can still sense the fear I experienced every morning going into these exams although I was fortunate in so far as my six form place was at a specialist music school and unconditional on GCSE results. This did take the pressure off somewhat.
As quickly as the GCSEs had arrived they were finished and then came the long summer when most people are looking forward to relaxing and being carefree before the next step of their educational journey. I found this time awful. I have had such structure for so long and suddenly I had nothing much to do. I had lost my routine and the security it had given me for so long.
I became very depressed and before I had received my GCSE results I ended up on antidepressants. There was an enormous stigma around mental health at that time, especially somebody so young being on them. Although the benefits of the medication outweighed any criticism I received.
GCSE results came and my envelope contained a selection of 12 A’s and B’s. I didn’t however see a reason to celebrate and spent the rest of the day practising my music wondering what all the fuss was about.
Two weeks later 6th form began and this was my first encounter of the word “Autism”. I went to a specialist music school and one of the boys had autism. It was a happy place where everyone immersed themselves in the security of a practice room and apart from a few “radical” students nobody really socialised which was right up my street. I spent a contented two years studying for my a levels and loving the daily performance opportunities.
I decided I wanted to study singing at a music college. I was advised to take a gap year to allow my voice to develop. My gap year was spent working for licentuate diplomas in flute piano and singing and I was awarded a place at the three universities I applied to.
The start of my degree was another time fuelled with anxiety as this would require me to be in the centre of London every day. The thought of that filled me with fear and I ended up on very high doses of anti anxiety and depression medication.
Music college was impossible for me. The daily commute, the variable timetable depending on what modules were being studied and the expectation from other students that you wanted to socialise. Whilst I loved the individual tuition the other aspects were near impossible for me.
Towards the start of my second year I had a breakdown and developed epilepsy. The next two years were a blur between being an inpatient at a psychiatric hospital and having neurological investigations. Thankfully the seizures were controlled with medication but were a complication when finding an antidepressant to work alongside them but thankfully this was done and my day to day life gradually improved. I enrolled with the open university and got a job in a music publishers.
I embraced the new routine of work and study and felt that my life was back on track.
The routine and predictability of my job was in itself therapy for me. I lived in a small barn conversion in a quiet village with my cat. Five days a week I went to work and the other two days I spent rekindling my love of music and going to Church on a Sunday. This was my happiest time and my solitude enabled me to function in the real world when required as I had the knowledge that I had my barn and when I got home I could unwind. After a year I enrolled with the open university and completed my degree in 18 months with a first! I also took my Fellowship diploma in singing piano and flute and these pieces of paper made me feel I had completed the missing pieces of my disastrous music college experience.
My diploma preparation also enabled me to get to know a colleague as she accompanied me in my singing and flute diploma. We would rehearse during lunch breaks and gradually we became friends. She was 27 years older than me but that didn’t matter, in fact it made it easier as I didn’t have to worry about her wanting to go clubbing.
She worked one day a week in a school and asked if I would like to work there too as there was a vacancy for a singing teacher. I went for an interview and to my surprise I got the job. The chaos of a school environment (a co-education) Grammar school was hard for me to adjust to and upset the rhythm of my life somewhat but after a couple of terms I was enjoying working with the children and seeing them develop a genuine love for music.
That February there was a concert at the school and I was asked to go and support my pupils. That evening changed my life forever as I ended up sitting next to my future husband. He was a deputy head at the school and I had met him in passing before but unusually for me we got talking and before I knew it I had accepted a dinner invite from him for the following weekend. What seemed like a fantastic idea then filled me with dread. I wasn’t going to manage to go to a restaurant on what my diary reliably informed me was Valentines Day. That caused major panic and I tried to pull out but with no success. We found a compromise with me offering to cook (that way I knew I was in control and would like the food) and I was in a familiar environment.
The evening went well and I had never felt the feelings I was experiencing. We met again three times the following week and 4 weeks after our first date he proposed. I did have to pinch myself but it all seemed right. He commented on my quirky nature but saw it as a positive and he was a quiet man who would rather be at home than out! He was changing job at the end of the summer term to work in a university, a lifestyle which would suit us both.
That summer we were married in a very quiet Church service and went to a hotel for afternoon tea with our 10 guests.
Life was good but I did struggle to adjust to living with someone else and having to adapt my routine around the needs of someone else (although he did most of the adapting!)
The expectations of a physical relationship was also difficult as I struggled with the sensory impact but we got there. Early that next year 11 months after our first date I discovered I was pregnant. My emotions were mixed between delight but also a fear of the changes and how I would ever be a mother.
The pregnancy went well and I got into the routine and experiences I was feeling. The sensation of the baby moving was quite difficult to adapt to and I found my self panicking if I hadn’t felt movement resulting in several panicked calls to the midwife.
I ended up going in to labour 3.5 months early at just 22 weeks gestation. The outlook was not good and we were warned to expect a stillborn baby. This was one occasion when my ability to compartmentalise came in useful. I distanced myself from the probable outcome and simply focused on the gas and air. Thankfully my prayers were answered and our son was born alive although the next four years were spent in hospital, predominantly intensive care units, around the country.
This enforced lack of routine was for me a real challenge and like all parents my priority was the welfare of my child but the additional stress was most definitely coping with being out of routine and never quite knowing what was going to happen in the next day. All parents who have had a baby in intensive care say about the noise and the heat but to me it felt as if every beat was chiselling through my skull and the constant high-pitched beeps cut through my head.
It was during this time that my son was diagnosed with autism, age 2, although it had been put down to his premature birth and subsequent long-term hospitalisation. He left hospital when he was 4 years old.
I had always imagined that life once he was home would settle into a better rhythm. However this wasn’t the case and then it was the battles with various professionals. When my son was 10 his consultant suggested that I should get diagnosed as I was displaying a number of symptoms and behaviours. Namely that I was unable to describe any of my son’s autistic behaviours as they were to me quite normal!
I ignored this initial mention of a diagnosis but gradually I thought about it and it became clear that there might be some truth in the speculation that I was on the autistic spectrum.
At the beginning of 2018 the possibility of my autism was raised again and this time I took the step to go to the GP to ask about a diagnosis.
My GP was very understanding and agreed that they had noticed “many traits in their previous dealings as well as during that consultation”.
Over the coming weeks there were numerous forms and questionnaires to complete, initially for the CcG to decide if they would fund a diagnosis. This decision was made within a few months and they decided to fund a diagnosis for me.
In my area there are no nhs drs who diagnose autism so I was going to be referred to a private clinic.
The diagnosis day arrived and I felt sick! What was going to happen and how would I deal with either outcome. I had already attended two previous appointments and filled out numerous questionnaires but this was the big one!
I was taken into a room with a very smiley lady who asked me some questions about every day situations. She then went to have a discussion with the three other doctors I had met during the process.
I was told to have a coffee whilst they sealed my fate but it wasn’t a coffee drinking occasion!
After about an hour I was summoned into the office and they spoke for about half an hour. To be honest I can’t remember what they were saying because I was too anxious to listen. I was then handed a piece of paper by one of the doctors that had my name and a diagnosis of high functioning autism.
Since my diagnosis 4 months ago I have been through numerous emotions and I don’t really know what difference if any it has made. Like all things it will take time for me to process so maybe I should write again in a year so I can explain properly what being a woman with autism means to me!