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?
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.
omg is there an autistic way of walking? New layers I hadn't even considered to worry about yet lol
I know. I've started watching my reflection now. Do I walk in an autistic way? Would an autistic person wear this? Etc etc. You have to put that stuff out of your mind. It's all nonsense .
I don't think it is any help. I don't feel like there is anything that can help me other than if you can invent a time travel machine and take me back to before this prospect was ever suggested to me. I'm at the bargaining stage now, I'm like, "I will make eye contact with every single person I meet and undiscerningly respond to small talk for the rest of my life if only I don't have to face the fragmentation of my sense of self" I mean, I hear lots of engineers are on the spectrum so if I keep asking autistic people to build me a time machine maybe someone will be able to do it eventually ... right?! I got my date to get the results anyway, so I guess I'm going through with it. I don't really want to but I don't feel like I have the self control to turn back. I also get the results from some exams on the same day so it should be lots of fun all round!! I really hate myself for putting myself through this. I am going to get so drunk afterwards. I'm glad medical professionals don't treat you differently. That is one of my biggest fears, somewhat irrationally, though I think my greatest fear is a change to my perception of myself and how I see my place in the world. My stomach is turning in knots over this, and my mind is just somersaulting in horror. I don't feel like myself. I'm not acting like myself. I feel like a totally different person - a changeling in my own psyche. I guess it just goes to show that self is an illusion anyway, but it's an illusion that I am very strongly tied up in and I feel like my world is just vanishing from under my feet. I am not capable of expressing strongly enough how I feel about this. I just want to turn back time. This is genuine grief and I haven't even received my judgement yet. And it does feel like a judgement, one that carries with it a life sentence. I wonder if I will feel like myself again if I'm not autistic. I will definitely have some explaining to do for being so dramatic, lol. I don't even mind that though. I know I will still be ashamed and embarrassed about my reaction but I would take it any day. Just let me keep on being me. When I saw Sixth Sense for the first time, it horrified me. Not any of the ghost stuff, it's the bit where he realises The Truth. It turns my stomach. The same with A Beautiful Mind, it's the moment he realises it, that it can't be true ... it bathes me in horror every time. The moment you realise that the way you perceive the world is totally wrong. It's like looking in a mirror and not seeing your reflection, seeing somebody else's face looking back at you. Or seeing your own face but distorted through somebody else's eyes. I can't imagine anything more frightening. And that is the experience that I am now facing. This experience is a very specific fear of mine, and always has been. There's a part of me somewhere under the surface that has a sense of humour about the thing, but most of me is terrified. I'm so afraid, and so upset and I don't feel like there is a single person in the world who understands.
Not sure really, maybe increased awareness over the last few years? Do have a consistent GP? My GP started about four years ago at the practice I go to and after one appointment with him I decided I wouldn’t see anyone else. I think a good and a consistent GP helps. My teachers had no idea and I was constantly in trouble yet I wasn’t naughty compared to other kids I don’t think. I think there’s a few people on here of simile age to you that have asked the same thing; how can no one have realised? It’s a weird feeling, I have days I think the same, and I look back and can see there was something clearly wrong why did no one pick up on it.
Really? I managed to live 50 years of my life before I realised. Nobody else. Me. Not Gps or family or teachers. How can that happen?
Don’t know if this is any help, but I got a diagnosis of ASD last year, in my 40s. I had been suffering from recurrent depression for years (since early 20s at least), along with huge anxiety issues. For me, finally understanding what the underlying issue actually is has been incredibly useful because it’s helped me come up with ways of dealing with both much better. That’s not to say it hasn’t also had its challenges. I haven’t found medical professionals treat me differently ( but then again I wouldn’t let them!). But as for everyone else, yes it has caused occasional weird reactions, but on the whole people have been good. On the other hand you don’t have to tell anyone anyway. You could just keep it as useful info for yourself.
Or of course you can pull out if you want to. You should always do what you think is right for you.
My gp suggested it to me and said it would be a good idea for me to go and get a diagnosis. I was really shocked when he suggested it, but having read up on it it’s so obvious.
Ms Mystery said:think they have some medical training.
Some GPs don't know everything they should about a lot of things in my experience.
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.
I was diagnosed a few months ago, but had been on the waiting list for almost 2 years, which really stressed me out! I suspected it many years before I went to seek an assessment, primarily because of the stigma associated with autism and family not being understanding. I haven't been to the doctors since I had a diagnosis, so I don't know if it will change anything. But the GP that I went to to refer me was really unhelpful during the process, there was a misunderstanding when communicating with the clinic through her, and she blamed her fault on me because of my potential ASD...
tbh I would feel really guilty about wasting NHS resources if I pulled out. So many of my friends have been waiting on various mental health waiting lists for unacceptable lengths of time and I've been seen so quickly. I feel like I should have given this appointment to somebody who actually would benefit from and wants an assessment. But yeah, maybe I should call them and see what they say about my options.
Can I ask how long ago you were diagnosed? And has it changed the way doctors talk to you?
Haha. Well I think they have some medical training. I guess if somebody is that anxious and there is no obvious cause you have to think about other possible options.
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.
My GP resisted my ASD suspicions quite vigorously (bless him he's a good lad really). Strange it should actually be suggested. I'd say your GP has got another patient or relative who's ASD.
I felt exactly the same as you when I was deciding whether to go for a diagnosis, and I felt exactly the same as you while I was waiting for my diagnostic assessment, and I feel exactly like you after I got my diagnosis. I can understand and relate to the worries, the pros and cons, the anxiety of dealing with people around you if they know about the diagnosis, the difficulty of coping with the change from not having the label to having the label, the stigma of the diagnosis, etc... After being diagnosed, I don't usually tell people around me about it because of the possible negative outcomes, but I think I feel more reassured after the diagnosis because I understand myself better.
Well I'd considered it before that and dismissed it. His other reasoning was an unusual pattern of depression. I suspect I probably am autistic, just to put that out there, mainly on the basis of late development of social skills (they were pretty absent when I was a teenager). But no I didn't go out of my way to get a diagnosis. It's just all come as a bit of a shock I guess.
Ms Mystery said:the GP spotted that I wasn't making eye contact and suggested it. S
Is that all?