Published on 12, July, 2020
Hi all, so I feel like a potential fraud as I don't actually have a diagnosis yet, but I'm going to go ahead anyway on the basis that my neurotypical friends can't assuage my anxiety so I thought I would give the autistic community a bash. Actually that's part of the problem, but bear with me.
So basically I'm an adult woman with a professional job, a close circle of friends and what I think are pretty good social skills. I've never had any problems that I've noticed reading between the lines of social situations (though I don't particularly like it when people use the space in between the lines - I much prefer if everything is direct) and I think I have a good sense of humour (multiple people have mentioned this) and I don't take things too literally (though I think I used to as a child), and I can make eye contact though I'm not a big fan, I am generally an anxious person, though I don't have any sensory sensitivities (other than one colleague eating crisps that makes me want to die) and I can be... I'm very... well I don't really believe in rules or social conventions and I can be quite hostile to authority unless I have decided off my own back that they are somebody who I respect. ANYWAY, that's just me being angsty before I even get started, and I suppose you guys can't really tell me if I'm autistic or not, so I guess I will break this down into the few separate issues I have:
1. The Test - I had the ADOS assessment recently and since then I can't sleep, I can't think about anything else other than about how I could have answered questions differently / missed opportunities for small talk. Like, even when she was attempting the small talk I was thinking, "Oh this is probably part of the test, I should probably respond to the small talk" but I just didn't care enough about the topics of conversation and I didn't feel like it was a social situation so I kind of politely deflected them. Anyway, now that I've gone away and thought about the test I've obviously realised what the puzzles were ACTUALLY about and what she was actually testing for, and I feel really deceived and duped and kind of violated and intruded upon. I guess that sounds a bit extreme but I'm a bit upset about it.
2. Being a *** - I'm having so much panic about the prospect of getting diagnosed with autism. It has like, completely shattered my self esteem and made me doubt everything that I thought was good about myself, and I'm now worried that it's a lie. Like I thought I had pretty good social skills, but if I have autism that almost by definition means that I don't, right? And I feel like I get on pretty well at life, but maybe I have all these executive functioning problems I don't even know about! It's upsetting! But also I feel really horrible for not wanting to get a diagnosis because I feel like I'm being a proper *** to autistic people (as hinted in opening paragraph above) by being so upset about it. That isn't my intention but it's hard to reconcile my emotions with my actual beliefs. My boyfriend put it as it being equivalent to saying that I don't have any problem with gay people but I don't want to be gay / my child to be gay, which made me feel terrible as I know he is right, I just can't logically deal with it, my emotions are too much for me. 3. Anxiety about how if I am diagnosed with autism it will change the way I am treated by:
a) My friends - I am worried that if we argue (and my friends and I are always bickering) some of them might use my diagnosis to gaslight me into thinking that I have read a social situation wrong when I haven't as a means of winning the argument. I don't think any of them would do this deliberately, but I'm concerned that they might use it to justify their own perception of what has happened.
b) Medical professionals - I am really worried that once it is highlighted on my record medical professionals will start speaking slowly to me and using simple language, which I would find really upsetting as I am a words person and I don't think I have any language processing problems :( I know I would find it really patronising if people started speaking to me like that.
I am very conscious that once I tell people I can't untell them, and I have already told virtually everyone I know that I am in the process of getting tested (because apparently at some point this didn't bother me as much, although that point now seems very remote).
4. Can I pull out of getting a diagnosis? Like I'm starting to think that might genuinely be the best option for me, but I'm concerned that if they have already made their decision and written up the report they might just pass it to my GP anyway. Does anyone have any idea whether this would be the case? And if I do, will I ever be able to get the results if I change my mind? I just feel so much like there is a sense of impending doom and it's coming to get me. I feel like the walls are closing in. I wonder if there is some kind of delaying tactic to give me space from this?
Check all those boxes.
I am not going through with it.
Just going back to my usual life a bit wiser.
Extremely glad I told nobody but my gp and my partner.
I wish you well.
Thank you for your reply. I don't think I'm capable of pulling out now (lol) but I'm glad you figured out what was right for you. I hope I can come to terms with this somehow.
Yeah, I also think you can ask to be pulled out if that's what you want If you want more time, perhaps you can asked to be pulled out, and then have another go with the assessment if a few years later you think you want to find out.
Well I'm going to be needing the NHS to treat my anxiety regardless tbh. Maybe it's better just to rip off the plaster now.
Ms Mystery said:tbh I would feel really guilty about wasting NHS resources if I pulled out. So
I wouldn't worry about that . NHS is yours to access.
I understand this! And it's very considerate for you to think about it in this way. I do exactly the same too. But sometimes when I try to be considerate, I miss out on opportunities; whereas other people in the same situation just go on straight ahead and ask for what they want, and they get it. It's hard finding the balance of when to be assertive and when to express your feelings. I really admire your consideration for others, so don't change the way you are, but try to think what is the most practical here. In the current scenario, you can't change the fact that you have already had your assessment (i.e., you can't undo the past), but you can decide your future, and you can decide which future you think is best for your health, as that is what the NHS is for. If a diagnosis now will cause you so much anxiety that you might need the NHS to treat anxiety, it might be saving them future resources to pull out. If you think you are able to come to terms with the diagnosis, then you might as well have it and save going for a second assessment in the future. I think it would be a good idea to call them and discuss your options.