Diagnosed this week (age 36) and struggling

Hi

I’m a 36 year old female and I was diagnosed with ASD earlier this week after 3 years on the waiting list. I strongly suspected that I was autistic and recognise how lucky I am to have received a formal diagnosis - I thought the diagnosis would come as a huge relief, but I’m really struggling!

The thing I’m struggling with the most is feeling like a fraud or as though my masking and ‘acting’ for all these years has misled people into not seeing the ‘real’ me. On the outside I appear to be coping with life; I’m married, own a house and have a full time job. However, I’m also very good at covering up just how much I struggle to cope on a day to day basis. I think this is a lot of the reason why I have struggled with my mental health and depression/exhaustion over the years.  I have spent my whole life researching and learning to try and act like others, and the person completing my assessment commented on how highly I scored on a Camoflaging assessment. I’ve been given the “but you don’t seem autistic” line a few times now and I’m a bit concerned that my work now don’t quite know how to view me and that they’re not sure who the ‘real’ me is anymore.

Did anyone else feel like this following a late diagnosis, or did anyone else experience any unexpected feelings following their diagnosis? I would love to connect online with others who were diagnosed as adults, even if we only message occasionally Relaxed

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  • Hi NAS79726. 

    Some of that definitely chimes with me. I got diagnosed in January, and primarily felt (and still feel) relief about that. I work full-time too, and have a mortgage etc. Not married though, and live alone which at least lets me de-compress to the extent I seem to need. Overall, the 'needs some support' aspect - which supposedly applies at all three clinical ASD levels - feels fuzzy in my case. In some fringe ways it does apply I suppose. A lot of other complicated feelings come up for this and other reasons, not least the 'imposter syndrome' dimension to things that you are feeling. I'm still getting my bearings with researching the autistic experience, but I'm reassured to hear that it is not at all uncommon to feel that way - at least intermittently. I've had one or two people try to well-meaningly minimise the diagnosis, but with most there's been understanding and even a discernible lack of surprise, which helps in a small way - they could maybe see traits all along, even though I am (to my huge detriment in terms of anxiety and fatigue) a pretty adept (if that's the right word for a learned reflexive mode of functioning in a neurotypical world) 'masker'. 

    Camoflage is a great word for it, I hadn't realised there were formal tests for specifically that. I do find that emotionally it's a bit of a roller-coaster, or is it that the usual roller-coaster now has an added dimension of overly-fixated measuring of how authentically and  autistic one feels in any given moment?

    One of the most helpful things I've heard so far is that one should bear in mind the fluctuating 'spiky profile' of each autistic person  - which, in part, means that an ever-changing combination of environmental factors, health factors, tiredness levels, busyness of schedule, disturbance to routine etc. will have an impact on how real your diagnosis feels in any given moment. Sometimes its so indisputable as you approach shutdown or burnout that you think 'right, remember this moment when you're later feeling better or less challenged'. But then that later moment comes and you're living it and you feel more 'standard human' on the inside, and the doubt creeps in again. So it is hard to maintain the certainty that you are entitled to. But remember: experts in their field assessed you thoroughly, conferred on it, observed a spectrum of things including stuff you didn't even know they were measuring/perceiving. There's no way you could have talked yourself or them into it - it simply was, and is, there. And that means you've been autistic every day of your life. And nobody - well meaning, mischievous, or otherwise- can tell you otherwise. It is an established fact. 

    And you don't end up asking for a diagnosis unless you've suffered a lot. That history of suffering hasn't disappeared just because you're having one good day where your interior self for once almost matches your camoflaged outward  appearance. Does that make sense? I'm not always great at throwing words together but hopefully you see my meaning.

  • Everything you say is true. I often don't feel "autistic enough" but then there are days it's glaringly obvious. It fluctuates depending on situation and environment.  I think the idea that the masking makes one feel uneasy is due to now feeling you aren't "authentic" when authenticity is important to autistic people. Also you wouldn't go looking for reasons of why you feel different if you didn't feel that difference.

    I think high levels of masking contribute to high levels of anxiety.

    I don't feel I fit specificslly within AS or NT worlds. I'm just me and that's all there is!

  • That point about authenticity is so true. I feel like I fit in nowhere comfortably, because on the one hand I have to be individualistic (nothing else makes sense to me) and yet I'm still very discomfitted by comparison, preceived judgement (societal, or on an individual level) etc. So the push-pull between those things is constant, the resultant anxiety inevitable. The 'aspergers' road is a hard and sometimes lonely one to travel for this very reason. But I don't think I'd trade it for a neurotypical brain, as to be unconsiously within the social veil full-time (living out one contradiction after another, with no distress at this) seems like too big a price for relative daily comfort. 

  • Why do you feel you need to fit in with any particular group? I think sometimes we need to accept that there will be push/pull and that's ok isn't it? I think many people  (autistic or non autistic) experience the push pull when they're in different situations where they fit or don't fit. But I understand what you mean and resultant anxiety. For me, masking is part of who I am in certain situations and I'm ok with that (I need to learn to manage it better so it's not exhausting though). I wouldn't trade my brain with anyone!!

    I actually think some "NT" people would really like to be more "individualistic" (ie not give in as much to conventions) so could look up to the way we see the world...some sort of aspiration....not to be autistic but just to give less of a toss....if that makes sense.

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  • Why do you feel you need to fit in with any particular group? I think sometimes we need to accept that there will be push/pull and that's ok isn't it? I think many people  (autistic or non autistic) experience the push pull when they're in different situations where they fit or don't fit. But I understand what you mean and resultant anxiety. For me, masking is part of who I am in certain situations and I'm ok with that (I need to learn to manage it better so it's not exhausting though). I wouldn't trade my brain with anyone!!

    I actually think some "NT" people would really like to be more "individualistic" (ie not give in as much to conventions) so could look up to the way we see the world...some sort of aspiration....not to be autistic but just to give less of a toss....if that makes sense.

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