Hello!! So I'm new here and just looking for some advice (be warned this is will probably be a long one). I had an assement last year I feel I was ignored and not listened too and I just want some advice on what I could do? Whether this is normal...?
**EDIT. I'm not self diagnosing at all, and I'm not saying I have austim. But I do feel that there is something there more than adhd, my doctor believes so and so does my phsyciatist. Please, please don't think I want to be diagnosed. I just want answers for things I'm struggling with and don't understand. I'm just looking for advice on where I could seek support.
Assessment layout :
First assessor - small questionnaire, long questionnaire (meant to be 2hrs was 1hr 15)
Second assessor -
Asked to describe things on screen
Read a story
Show how I brush teeth
Question about understanding of love
(that sounds weird now but that was literally my second assessment)
(meant to be 2hrs - was 45mins)
Then wait 4-6 weeks for a diagnosis
I'm a 22/f from the UK and was sent for a adult assessment for autism. This was in October of last year (during the lockdown/pandemic). My assessment was over a facetime call and they told me that the assessment would take around 4 to 5 hours but it lasted no more than 2 (both assessments together).
I'm going to try and explain the situation as best as I can't, but I'm terrible at wording and explaining things, so if anyone if here by the end I would really appreciate the help.
So I had my assessment back in October over a facetime call, I had this assessment alone as it was during the lockdown. My best friend who is autsitc was the one who suggested I got this assessment as her and her mother thought I fitted within the "criteria". I have Auditory Processing Disorder, ADHD and OCD diagnoses already.
My assessment started and I had my list (I love lists) of everything I struggled with, but I wasn't allowed to read any of it, so I started to freak out (internally). I grew up with no help nor understanding of my difficulties, so I just thought I was weird. I ended up, to appear "normal" or "functioning" I began mimincing those around me and I do just this when talking to a stranger. I appeared calm, talkative, making sure I made eye contact (not too much), I keep my crazy arms and leg shaking to a minimum and try to appear "functioning". During the first assessment the women would interrupt me, ignore what I was saying and put words into my mouth. She wouldnt let me finish my sentence nor give me time to explain things. Because I don't understand much regarding things that are link to autism there are a lot of things I missed. This is due to her wording. She would ask misleading questions such as "do you have a routine?". I answered no, because at the moment I don't do anything, leave the house, work, nothing (I'm struggling with severe anxiety and depression). But if she asked "do you need a routine to function?" I would have said 100% yes. I cannot go about my life without have a set squedual to do thing. Even down to drinking water etc.
This is just a small snippet of how she was with me. If I go into complete depth, this will be a short novel and not a post.
My second assessor was worse. He completely ignored me, didn't pay much attention to what I was saying and would cut me off after I said yes or no, with no chance to explain and further the question.
When I got my letter back saying I don't fit the criteria for a diagnose, and read through what they put, it was nothing that I said. A lot was missed out and a lot was very much wrong. They contradicted themselves so much. For example, "she made good eye contact" but than a paragraph later. "she barely made eye contact and looked down most of the time". It also said I understand emotions well, in which I do not. My understanding of emotion comes through my ideologies from books and things I proceieve as those emotions. I freak out if I don't feel a certain emotion at a time I feel I should.
One sentence literally said, "she knows and demonstrated how to brush her teeth so she can't fit within the criteria", like my friend was so baffled by that part, as well being told "YOU HAVE ADHD SO WE CAN'T DIAGNOSE YOU WITH AUTISM".
This goes on and on and it's so hard to explain so I do apologise.
But, I ended up emailing them and trying for a reassessment, explaining things I felt were overlooked or things I didn't know were apart of the criteria or fitting within the spectrum. Things I felt and was told that I missed. Explaining I didn't really understand, I was nervous and without support. They more or less ignored everything I said and just kept telling me, that they examined my throughly and I don't fit what's needed.
To which I responded "please, I don't think you understanding what I'm trying to explain".
Their reply. "I'm sorry you don't seem to understand me". To me tjay seems rude. I could be wrong but others have said it's was really sarcastic (I don't understand sarcasm at all - so I need to help).
I don't know what to do. I've tried seeking help, but don't know where to go and I'm traumatised by my experience with them, but can't afford to be seen privately.
Does anyone know who I can reach out too? Whether I'm overthinking it. If someone what's more in depth, I'll happily give it. But this is all I can manage without people loosing interest.
Please, can someone help
Thank you