Asher Jenner accounts her ED Journey – Women’s Radio Station
My name is Asher. I am 18 years old, and I love dancing, opera singing, Marvel Films, Star Wars, Harry Potter, my dog Roxy and Anime.
I am on the Autistic Spectrum, and I have a specific condition known as Pathological Demand Avoidance or PDA. I have also suffered some major mental health issues, including an eating disorder. I was extremely ill for a very long time. I did not eat any solid food for about 3 years, and I spent 2 months in hospital and 14 months in an inpatient eating disorder unit after I was classed as life in danger. I am well into my recovery now
I had no understanding or support at all in mainstream primary school. I was bullied daily by both pupils and by staff. Both school staff and Local Authority staff such as Eps would not listen to myself or my parents and understand my condition or my needs. I was told several times a day how naughty I was. I endured this for many years until school excluded me in year 4, as I was permanently in panic attack or meltdown as school did not understand or meet my needs. I was forced to mask all day in school, and I was told by staff not to stim and that I must give eye contact. I was told off for being in sensory overload. I was basically not allowed to be myself or to be Autistic.
Camhs refused to diagnose me. They said I wasn’t Autistic enough!
I was privately diagnosed, however, Camhs refused to give any meaningful support for my mental health for 10 years from the age of 5 to 15. My mental health issues began immediately after I started school, and I began self-harm and attempts to kill myself. My mental health just became worse and worse over a period of 10 years throughout my childhood. I ended up in a position where I did not leave my bedroom for years, no one could touch either me or any of my possessions, I could not go anywhere near my dog or anywhere she had been (and I LOVE my dog loads!) I missed years of schooling too.
Camhs refused to acknowledge the existence of PDA and had no training or understanding of it. All of this was totally unsuitable for me and therefore I had absolutely no support for my mental health until I entered Ellern Mede Eating Disorder Inpatient Unit. I had no trust in professionals at all by this point. I had been failed by education, by social care and by mental health professionals.
When I entered Ellern Mede in April 2020, I could not stand up straight at all. My heart was weak, and I could not walk more than a couple of steps without stopping. I was classed as life in danger. I left Ellern Mede in June 2021, and 4 days later I took and passed a level 3 ballet exam, which is equivalent to an A level, with a Merit grade. This was thanks to the support and understanding of the whole team at Ellern Mede, and a fair bit of my own determination!
There are no national guidelines at all for treating the combination of PDA with an eating disorder, and the conventional Maudsley method is a series of never-ending demands. This meant that Ellern Mede had no guidelines to follow when treating me, and they used information from myself, from my parents and from an expert at the PDA society to work out a personal, holistic approach to help me. As far as I am aware, I am the first person in the country to have gone through this process and been successful. Ellern Mede have asked me to return to their hospitals and train in PDA and eating disorders in combination and I have done this on many occasions. They are now able to use this knowledge to help others.
I am currently beginning my career as an inclusive dance teacher, as I am giving dance classes to younger Special Needs children.
Since leaving the unit I have also given many presentations and training sessions in PDA, eating disorders, Autism and mental health etc…as I want to ensure that no one else suffers as I did, and that professionals and parent/carers have the knowledge to be able to help those of us with PDA. I have been involved in the writing of a self-help book for teenagers with Autism and eating issues and I have sent information from my presentations all over the world. I have also assisted my local NHS to improve their care for Autistic and PDA youngsters. I have been nominated for awards for my volunteering and helping others, but I don’t do this for rewards, I do it for others like myself.
Here’s what Asher had to say after her interview on Women’s Radio:
It was quite nerve wracking at first, but once I got into the flow I enjoyed chatting!I just hope that I was able to pass on some useful information about Autism, PDA and eating disorders which can help someone out there.Since I left my eating disorder unit, I have been using my experiences and knowledge and understanding to help bring about more understanding and hopefully some changes for the better for people like myself. I hope that our chat today has been a part of that process.Thank you for the experience Anna and the opportunity to help. It means a lot to my me.