CEO and Director
My name is Sophie and I’m 24. I have a degree from Bristol University but have had a very challenging couple of years and this is my story and why I have founded this charity to help others.
In 2014 I was diagnosed with Anorexia, I received outpatient treatment for eating disorders but I got worse.
In 2016 I became an inpatient in an eating disorders unit and faced huge obstacles and was put on various medication. Things deteriorated further and I became a completely different person. After five weeks I was sectioned under the Mental Health Act, and transferred to the general hospital and force-fed through Nasal-Gastric tube. It was all highly traumatic and totally horrendous and I felt my needs (hate of change, social difficulties…) were being ignored facing constant change, disruption, uncertainties and was inappropriately placed on a busy communal ward with patients suffering many different conditions and felt highly uncomfortable. I then got moved again after a further six weeks back to the eating disorders unit.
After an additional five weeks and further sectioning I was taken off my section to be kicked out of the unit for not eating! I complained throughout the whole admission that I was different to the other patients in the eating disorders unit but was I just ignored, medicated and told I was psychotic and ill, you can imagine what this did to me mentally.
I then began a year long journey back with my family, who were not receiving any support, and given weekly brief outpatient appointments. I saw this treatment was having little impact and paid privately for a personal trainer, very slowly putting on weight. After a few weeks I became more obsessive and anxious again and my outpatient treatment was completely stopped because it wasn’t ‘working’. I then spent a few more months, struggling along at home finishing my degree, slowly deteriorating again suffering from anxiety, obsessions and all the effects of physical starvation.
Turning point, you’re Autistic
Then year my mum, a Dr and Lecturer came across an Aspergers article and said it sounded like me. After much discussion ma and my mum went to the Dr and got a referral straight away for an NHS ASD assessment but had to wait 8 months.
I had to wait out these months before attending this ASD assessment which was to my utter disappointment was brief and I was quickly dismissed because I had already been diagnosed with Anorexia and that was all ‘it’ was and what was causing my current difficulties, they didn’t want to know about my childhood difficulties. I was beside myself as it was clear to me, my family and friends there was something to my mum’s findings.
I then paid for a proper private assessment from an expert Cambridge graduated Psychologist and spent five hours being assessed, mainly discussing my childhood difficulties (there had been many but these had always been overlooked). It was then that I was then diagnosed with Aspergers!
Following my diagnosis I began a new course of outpatient treatment in the Cheltenham eating disorders service for my Eating disorder. Nothing changed and things actually got worse again. The service then questioned my Anorexia diagnosis, which I had previously suggested 3 years ago, but not one person took me seriously! I then after a further few weeks received a psychiatric assessment and was FINALLY diagnosed formally with Aspergers and OCD and Anxiety! I don’t have anorexia and never have, although I am a very low weight and do have disordered eating.
I have always been highly anxious and obsessive and now with my low weight my Autistic traits have been exacerbated and it’s one vicious cycle from which I am stuck. My obsessions and adversities to change keep me stuck although I really want to put on weight! I am now finally being referred to a new service, with new medication and treatment for my real condition, my OCD, with the aim of gaining weight and managing my obsessions and anxieties to finally get my life back on track!
I struggle with low moods and self esteem now and feel very frustrated and helpless and resent the time the illness and lack of appropriate treatment has had on my life.
From my traumatic experience I have been spending much time trying to highlight my cause, research this issue and help others.
I have been on he Victoria Derbyshire show:
And have had an article in the Bristol post:
I now really want to help others who are autistic and have ‘slipped through the net’ so they don’t get to this crisis point and have to suffer like I have. I want this charity to highlight this cause and help progress further research into the field. I initially wanted to conduct future PhD research in the area of females and Autism with the aim to improve early diagnosis but could not get a grant to conduct this. I have a passion to highlight the impacts of mental illness and how this may be driven by undiagnosed autism, especially in high functioning girls.