Published on 12, July, 2020
Hi everyone,
First time here and a little nervous!
Last year I went through alot of therapy for various mental health illnesses inc. anxiety, depression, ptsd, eating disorder. During the sessions, me and my therapist spoke about autism being a possible diagnosis for me, and is something I have thought about alot over the years, so was keen for her to refer me.
I've just had the phone call with the organisation doing my assessment (private service through the NHS). I'm really worried about a few thigns and would love to know a bit about what to expect.
My parents don't know that I spent last year in therapy, and don't believe in mental health or understand depression anxiety etc - they call them "the troubles" and make jokes out of people that talk openly about their mental health. They are fro a generation that don't understand and don't want to understand.
When I spoke to the assessment coordinator on the phone today, she said that it would be helpful if I have my parents on the call (having to do it over Skype because of the coronavirus) and I'm really not comfortable with this. She also asked me to send her school reports so she can look at them in advance. My mum filled out the questionnaire when I was referred last year under the pretense that it was for work (I work at an charity that works in conflict and insecure environments, so it made sense to her). How can I ask her for my school reports and to attend the assessment when I don't feel able or comfortable for her to know about my mental health history (including suicide attempts, sexual assault etc) and I don't want to tell her about the assessment anyway?
I broached the subject with friends at the weekend as they're super open about different needs,and they were really shocked about the fact that I'm going through an assessment as they didn't think that an autism diagnosis ws for me, but they only really see me once every few months so I don't really think it would be helpful for them to be at the assessment either! I know that it isn't necessary to have someone at the assessment, but I worry that if I don't then it won't help me.
I'm also wondering whether it would be better to wait until restrictions have eased and do the assessment face-to-face? I'm worried about what to expect and know that I avoid hard topics of conversation and my therapist last year said she only picked up on stuff because she could see how unconmfortable I was, so I feel that if the assessor can't see me properly then won't these cues be lost?
Thanks in advance to anyone who can help!
Hi again I’m happy you chose to pursue your diagnosis your own way. It’s a big thing to find out after a long time wondering about it. The one trouble I am finding is even though I’m diagnosed close family are still treating me the same and having a dig at me over things I clearly can’t control. But generally I’m glad I know as it’s allowing myself to start trying to handle some situations that I struggle with. As far as support goes I find that if you have “established “ yourself ( have a job, living ok, coping with finances etc) they seem happy to sit back and allow you to find Your own way. I will say I think they should offer some sort of emotional support/ follow up appointment after diagnosis as it’s a lot to take in. It’s like relearning my whole life again. Either with gp or assessors as a compulsory follow up. But I guess that’s down to demand and cost as to why they don’t. When possible I am going to go and have a chat with my gp just to see if there are any options available as far as support and help goes. incidentally my workshop manager knows at my work and couldn’t be more supportive and has handled my job slightly different/better so I struggle less when I hit a difficult task. Sorry if I’m rambling but not had much of a chance to vent these feelings lol.
Thank you Aidie!
I honestly don't even know who I'd tell to be honest. My one friend I would trust with this normally has a brother who is on the spectrum and she speaks so badly about him and ASD in general, that I think I will probably give that one a miss! Will definitely think about it though.
Sucks that you weren't given any support or follow up, but sounds like you're managing to recognise things that hopefully will help you with your manager - your current line manager sounds decent enough if you've shared with them so I hope things stay positive for you! :)
Thank you for taking the time to reply
All I got was a report which said yep you're on the spectrum --- There nothing after that. I mean absolutely no support. I also am well educated and working which is pretty common in autistics but my social skills are so bad I have lost jobs fighting with managers. But now I know why which helps somewhat. I have learnt to watch my thoughts and pause before doing/saying something stupid.
SIt down each day and have a cup of tea and let your mind process your new status :) The next big thing is who do you tell ? I recommend you wait at least a month before telling anyone unless u have a very close friend u can trust Only my line manager knows about me, no else in my office, as far as I know, is aware.
Thank you both for your replies and support, I really appreciated it! I just had my assessment this evening, and yup, unsuprisingly I was diagnosed with atypical autism.
Didn't ask my family or friends to the assessment as it was super uncomfortable for me to do so in the end, and didn't make much difference. I think because I had done lots of research beforehand, I was able to focus on the specific elements I wanted to talk about and the psychiatrist doing the consultation basically just kept chuckling to himself when I said certain things and he said at the end it was because I was describing it perfectly which made me laugh as I was sure I was making it up!
I don't really know how to feel now though. I knew years ago that ASD captured my character perfectly, and the pscyiatrist said to me that I was super unlikely to get any follow up support because I was well educated and in full time employment. Feel kind of empty as if nothing has changed now. Also, he explained why he says atypical (I am a very empathetic person mainly because of my job) but I feel that this makes me even less likely to get the support I need with social skills because people will think that I am not "properly" ASD. Does that even make sense?!
Think I just need to take some time to process it.
Hi. I haven't had my assessment yet (apart from an initial telephone assessment), but it looks like you've had some good advice from Jd :) Having read/watched several autistic adults speaking about their experience of diagnosis, it seems that quite a lot of people can't, or choose not to, take a parent with them. Based on what I've heard, the assessors will still listen to you, as your own childhood memories are valid :)
I'm sorry to hear that your family members aren't very understanding about your mental health - some of my family are like that too and it makes things very difficult. It sounds like your friends might not know very much about autism - my friends were surprised too, but once I explained what autism is like (rather than the outdated stereotype they're used to seeing in the media), they could see why I chose to seek diagnosis and they're very supportive. Hopefully, you'll be able to talk to your friends now that they know more about you, but feel free to drop me a message on this forum if you'd ever like to talk :)
It’s your choice so don’t feel pressured into it. I preferred being alone as felt more like I could be me. If my mum was there I would have hidden things as didn’t want her to feel like she’s missed things and let me down. The people who did my assessment were spot on and friendly.
Thank you, that's made me feel a little better about the video assessment! Think I will go it alone as I'm too nervous to have my family part of this.
Having just gone through a video assessment I feel it was easier to handle as I was in my own environment. And I was told my parents would be spoken to during the assessment. now not at any point did the assessor ask to speak to my mum and took all my recollections of my childhood as evidence. The impression I got is that they want to speak to relatives if the person doesn’t display autistic behaviour to a certain level. having read my report I display a lot more traits than I ever realised, visually and verbally and my diagnosis was very clear. they are trained to pick up on a lot and I was stunned at what they picked up on about me through video link. So don’t let that put you off.