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?
It's really hard to split out which condition is which in some cases. So EUPD would likely be linked to the '"onset" period of your symptoms. Misdiagnosis hurt because they can mean you recieve wrong or dangerous treatments.
Personally speaking, I have both ASD and cPTSD, and can only seperate their impacts due to some very careful descriptions of when and how specific experiences impacted me.
For example, since being very young, I was literal, a rules follower, oftem focused for long periods, didn't understand breaking the rules.
Then I had some fairly major trauma around 13, that had a long term impact on my life. Diagnosed as "depression" for nearly 3 decades aftet that, having the cPTSD diagnosis is a life changer for me in tackling my symptoms.
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.
Hi and welcome to the community! I was diagnosed with Tourette (I have tics when stressed) and I was forced awful meds as a teenager, only when I threatened my family to take my life they stopped forcing the meds on me. My teachers in primary school suspected I’m autistic but my mom got upset hearing that and she refused having me tested saying I’m normal just like her. Now I’m not diagnosed and I’m not sure if I need it but for sure I need mental health support and care, I’ve already heard from psychologist and psychiatrist that they suspect I’m autistic and I was examined by neurologist who said, that I’m very sensitive and also hearing test showed unusual hearing, doctor mentioned hyper acusis but it didn’t make any sense to me at that time. In fact I use earplugs to prevent having exhausting panic attacks in noisy environments. It’s very common experience, especially for us, women and all other people who don’t fit the stereotype of how autism “looks like” and whom affects.