Sharing our stories - Claire’s story

 

My name is Claire and I have Autism Spectrum Disorder (ASD) and Generalised Anxiety Disorder (GAD). I have struggled with my mental health since I was 13, and I always felt out of place during school. I tried and failed to keep multiple friendships and could not understand where I was going wrong. I always had headaches, spend most of my time crying, self-harmed, and often went days without eating. I couldn’t understand why I was feeling this way, and why nobody could understand me.

 

It was a huge surprise to me when I was referred for an Autism diagnosis, as I had no idea what that even meant! I had been seeing therapist after therapist that could not understand me, and now suddenly I was told I might have had some ‘disorder’ my whole life that I’d never even heard of. The waiting list for diagnosis was huge – it felt like I was in limbo for nearly two years while everything in my life was changing and I felt completely out of control. I had my GCSEs to complete, I moved to a new school to do my A Levels with a 1.5 hour commute each way, and was aware that I had some pretty important decisions to make about my future soon. I was also diagnosed with Anxiety, which presented partly in OCD and eating disorder symptoms. During this time, I descended into a pit of despair and was too anxious to eat, sleep or go about my daily tasks, reaching a weight of 6.5 stone, and being hospitalised for attempted suicide twice. Finally, I was officially diagnosed with ASD just before my 18th birthday, and was discharged from child mental health services almost immediately and flung into the abyss of adult services.

 

It took me a couple of years to get used to what this diagnosis meant for me, and slowly more and more things were clicking into place; friendship troubles throughout primary and secondary school, the extreme eye pain I experienced in the sunshine, the huge meltdowns I had every time my parents moved my piano stool an inch out of place, and so, so much more.  Things started to look up – finally I had a place in the world and there were others out there like me. I decided to focus on myself, buckle down and prove that despite my struggles and discouraging AS Level results, I could achieve A Levels that would make me proud. Keeping myself focussed on one date in the future – results day - really helped me keep tabs on myself – and though I continued to struggle every day, I was now taking anti-depressants and working hard towards my future. I got an A* in English Literature A Level (including full marks on the final exam), A in English Language and a C in Biology (up from an E the year before). This is the first time I realised I was ‘’braver than I knew’’. I was so proud that, despite weeks spent away from college in hospital and struggling to get up everyday, I had achieved results way better than I or any of my teachers expected.

 

Then… I had decisions to make. I had applied for University on the off-chance that I might get in, not really thinking about it, and now I had 3 offers and a matter of days to decide what felt like my entire future.  With the help of my family, I decided to go for it, and made sure I chose somewhere with lots of support for students with disabilities. I went to an Autism Familiarisation day at my chosen University and met lots of potential students with Autism. All the articles about autism I’d read online focussed on advice for children, mostly below the age of 5, and it was reassuring to find a whole group of people – adults – who I could relate to. Though I was nervous, meeting others who would be going through the same thing helped me feel like this was the right choice –  I started studying English Literature at University that September.

 

Settling in at University was hard. I spent the first week, like many others I am sure, crying myself to sleep every night. I had never lived away from home, let alone been fully in charge of making sure I ate, slept, did all my work, did housework and made and kept friends. Thankfully, due to my diagnosis, I was set up with lots of support. I had a buddy in my first week, and weekly meetings with an Autism Mentor and Study Skills Advisor. It was these services that kept me going. I was still struggling with my mental health, and the added pressure of all this change meant I was experiencing a huge amount of stress from my ASD. In my first year, I went to almost no lectures because I was so anxious of going outside, my sleep cycle completely reversed and I spent all night at the library catching up on all the work I missed in the day time when campus was too busy and loud for my senses to cope with, and had frequent trips to the hospital for self-harm injuries and struggling to keep on top of taking my anxiety medication.

 

In my second year, I encountered bullying for the first (and hopefully last) time. Though I had always had troubles making and keeping friends, I had never been actively persecuted before. It felt ridiculous and shameful being bulled at the age of 19 – surely this was only something that happened as a kid? I was constantly intimidated and manipulated by someone who I considered as a friend, but who took advantage of my disability. It started off slowly, being manipulated into skipping classes to go shopping (which I hated), or walking 30 minutes somewhere I did not want to go. But slowly it started to get more serious, and more violent. There was physical assault, broken glass, I even had to escape through my bedroom window in the middle of the night to get away. I spent every day locked in my room, too scared to venture outside in case of further conflict, not eating, calling my mum crying every night, and yet again I was hospitalised for a suicide attempt at Christmas. Thankfully, after a while, my mum called the police and they were given a warning for harassment.  I also met the most amazing man with generous housemates who let me sleep in their spare room for the rest of the year. I was so far behind my studies because of this, I was seriously considering giving up. However, I utilised the resources and support networks around me. My mentor and family helped me make the decision to go part-time with my studies and move elsewhere as soon as possible.

 

Having removed myself from this toxic environment, and gone part-time, I had enough time to focus on myself as well as my course. I had half as much university work to do, and twice as much work to do on my mental health. I filled my time with extra activities – I joined a choir, I focussed on fixing my sleep pattern, I joined a society, I planned meet-ups for other people with ASD at University. I met people, good people, who were fine with my ASD and even liked my quirks. The best thing I did this year, however, was conduct a research project on creating an autism-friendly environment at university. I decided to take the bad experiences I had had and try to change them for prospective students. This helped me put my struggles into words; I decided to focus on the physical environment of the university so future students might not have to only venture out at night when the lights were dimmed and the noise at a minimum to do their work. I conducted research into the area, and sent out surveys, and then presented my findings to a small conference of students and staff at the university. I got such a positive response that I was asked to speak at a lager conference for all the universities in Hampshire. My findings were used in the re-designing of university study rooms and I was invited to help out with the trial of a sensory room. I had taken time out of studying for myself and ended up finding a purposeful job to do. I had not only used my time to make my life and the lives of other people with my disability easier, I had gained so much confidence in myself – going from not being able to leave my bedroom the year before, to giving public conference papers in rooms full of people. I was so much braver than I knew, or even thought possible.

 

Using the support structures around me and giving myself time to process my emotions was the best thing I have ever done. Learning when to ask for help, and trusting that people care and are there to help even if it doesn’t feel like it was of immeasurable value. This helped me to gain strength and confidence in myself, enough to accept myself for who I am, disability and mental health included. Though I still struggle with my disability every day, I have realised I would not be the same without it; I may have sensory processing issues, huge struggles with change and everyday tasks, but I would not be as passionate, as determined, or as trustworthy as I am without ASD. My first year at uni I went to about 5 lectures, and 3 years later, having gone through so much, I have achieved a solid 1st class degree, am settled living in my first flat with my long-term boyfriend, and am facing troubles in my life by asking for help when I need it, planning ahead, and believing in my own strength. I continue to prove to myself that I am brave to keep going, and to have gone through so much ill-health and come out with so much strength and confidence.

 

I truly am braver than I knew.

 

 

 

 

 

 


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  • Samantha Westerman on

    What an amazing story, you are an inspiration to others! I am amazed how you have overcome the things life has thrown at you! I am sure your story will help others to push forward! Well done x

  • Jane Fawcett on

    That is a truly amazing story Claire. You are now a braver and stronger person than you, or I knew. Best of luck in whatever you choose to do, you are sensational xx (and you have a beautiful voice, keep using it xx

  • Jackie Smith on

    So proud of you Claire😍 Inspirational indeed and so much braver than I knew too xxx

  • Patricia PAlmer on

    What an amazing story Claire. I am in awe of what you have achieved and how difficult it must have been. I’m sure there were many times when you didn’t feel brave at all, so it is an especially significant achievement that you are able to recognise how brave you have been, and how brave you still are now, to carry on fighting and achieving so much regardless of the difficulties you face with your disability. That you have been able to help others with ASD go through their educational journey a little more successfully is a real legacy for you to leave. Well done, and I hope things just go on getting better for you. X

  • Caroline Spettigue on

    This is my niece. I could not be more proud of her achievements. She is truly inspirational and braver than I knew ❤️


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