Published on 12, July, 2020
Hi, my name is Emily. I am 21 from the UK and I was diagnosed with autism last year. I always struggled as a child, in primary school I was referred for a diagnosis however due to circumstances not under my control, this did not happen. As I was leaving high school I had a lot of stress; my dad passed away a month before my GCSEs and I had an abusive home life. Due to this I experienced what I am now aware is autistic burnout. I barely scraped my GCSEs despite being predicted all 9’s (A*) and I quickly dropped out of college. For the next four years I was under mental health teams and had extreme depression that left me unable to leave the house. Despite this, I was forced to move out at 17 and became homeless. I spent time in psychiatric wards due to dangerous behaviour towards myself and I got even worse. I was diagnosed with EUPD (something I’ve learned is a common misdiagnosis with autistic adults, mostly females). The stigmas behind EUPD by those in the medical field and out left me without support or help and I got much worse. It wasn’t until I saw another doctor that autism was brought up and I did a test with him which indicated that I had autism, I was then put on the pathway for a diagnosis and a year later I got it. This is an extremely common story for autistic adults, mainly females that ‘mask’ well. I almost died several times due to a misdiagnosis that meant that the care I was given was inappropriate and left me vulnerable. I am wondering if anyone else has experienced anything like this in terms of misdiagnosing Autism for a psychiatric disorder and wether your diagnosis impacted your care?
Hi, I had a very similar experience. I spent many years with deteriorating mental health and eating disorders. Going in and out of psychiatric wards and hospitals being given different diagnoses including EUPD and any time autism was brought up my mental health team dismissed it completely. This led to me being treated completely wrongly and dangerously. I also almost died a number of times due to lack of time to understand my real struggles from professionals. I ended up going to get my diagnosis privately this year aged 29. When I was diagnosed and given the validation for how I’ve been coping over the years it felt good. But I’m still left feeling very isolated and without any real support for how to make positive progress moving forward and whether my previous diagnosis’s are correct or need to adjusted.