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

  • 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.

  • Congratulations on your diagnosis! Wish I'd been ONLY 36 when I got mine, lol.

    As for the rest, don't worry. Process slowly.

    You aren't a fraud. You learned alternative strategies. Actually, that masking business was the hardest concept for me to wrap my head around. It sound so disingenuous, doesn't it? But it's not. It's just a different way of doing what others do because you've had no choice but to do life by NT rules.

    But, whay hey! Once we know, there IS real choice. We can now mask when we please (can come at an anxiety cost) or shove the mask in the bin.

    I'm slowly dissecting my mask and choosing all the time. Yes, I'll force a smile and talk about the weather to the old lady at the bus stop. I might think the conversation is pointless, but I might be only soul she spoke to today. Other times, I've taken to ditching it. I don't pretend to get jokes when I don't for instance, except now instead of me asking my friends why it's funny, I just think 'ok, it's an NT thing's, and say 'K, let me know went comedy act is over'...and so on.

    As for the 'you don't seem autistic' line...well, I'm sure I don't in some context. Put me in a medical environment though and there 50% chance of a melt down/shut down. Folks just don't understand, but you could educate them.

    Good luck moving forward and we are always here.

  • Hi. 

    I signed up for the forum mainly so I could reach out to you. 

    I'm so sorry that I can't actually help you but I just wanted to reassure you that you are not the only one experiencing the things you mentioned. 

    I am in very similar position. So much so that I had to scroll back up to make sure I hadn't written it myself and then forgotten. 

    (That actually did happen once on Youtube. I read a comment I had made a couple of years before and I was like "WOW... this guy... I do that exact thing...WTF that's my favourite too."

    Right. Where was I?

    OK. Diagnosed at the age of 47 or 48.

    I don't have the social skills or attractiveness to have a partner or kids. 

    Dogs like me. 

    I like dogs. 

    Dogs like to lick my knees for too long than I am comfortable with. 

    I have never licked a dogs leg. 

    SORRY. Why am I talking about dogs? 

    I can connect with them in ways I can't explain. 

    I totally understand what you are saying about feeling a fraud.

    I don't think that my work believe that I am on the spectrum.

    Since I told them, they have made some very inappropriate comments and I am continually made to do tasks I am uncomfortable with. 

    I would like to think that they think that it's there way of treating me normally.

    But it's also crossed my mind that they are trying to force me to leave. 

    I can't really blame anyone for thinking I am not on the spectrum because up until my diagnosis I thought I probably wasn't. In fact. right up until the end of the first assessment period, I believed categorically that I wasn't.

    When people tell you that you "don't look like you have autism", usually, they aren't trying to belittle you. It's their way of normalising you, so that (they think) you will feel less isolated.

    For many people, their only reference point is Raymond from the film "Rainman"

    To them, that's what autism looks like. 

    So, try not to be too hard on people. Most people don't know how to react. Consider how you might react if a friend/colleague told you they were x or y.... x and y being conditions you didnt know a great deal about.

    I'm trying and failing miserably not to hijack your post by talking about my situation (and I do intend to write my own introduction thread) but I am attempting to demonstrate that you are not alone. 

    To (finally) answer your question: 

    Immediately following my diagnosis I felt a huge sense of relief. To use a cliche, like a weight being lifted off my shoulders. 

    I mentioned that I thought I wasnt on the spectrum but I have, as long as I can remember, felt like an outsider. Like I didn't really belong where I was. As if I was different to the other people but I never really knew why I felt that way. 

    So it was a kind of "Aaaaah, so that's why I have always felt unusual". 

    The relief disappeared after a few weeks. Following my diagnosis I was told that I would recieve a "full support package". What I actually recieved was a leaflet about self harm. 

    Apparently self harm is harmful. 

    My diagnosis came in January 2020, 6 weeks before the first covid lockdown. 

    So that full support package never happened and I was left to deal with it all on my own. 

    What was pre-covid uncertainly, quickly became complete alienation. 

    The half a dozen friends I told about my diagnosis, stopped contacting me (I expect, due to not knowing what to say) 

    I'm hoping things are going to get better. 

    If you or anyone wants to play a couple of mood enhancing songs then try  

    https://youtu.be/ljjWeHmeVE8

    SKIP to about 2 mins into the video above

    And also.... 

    https://youtu.be/qcous9aiaP8

    An

  • Hi there I too was diagnosed later at 41 (2 years ago) and much of what you write and the replies you have already got really resonate. I've spent a lifetime struggling and finally understand the reason for much of the struggle which came as a huge relief however alas the struggle is still very much there. But the diagnosis has helped me start to unpick the issues I have and (very) slowly try and find some strategies. I got my diagnosis just as covid hit and just before I gave birth to my son as a first time parent so what then happened was for the next year or 18 months I kind of put the diagnosis and working through the impact to one side as so much else in my world had changed I had no space left for it.

    I've so much I could say but don't want to write an essay! I really relate to the feelings described about thinking you are not autistic enough as the making and strategies I have learned sometimes make me feel almost 'normal' and often I know I mask so well people have mo idea of the true struggle and inner turmoil. And that's the other resonance it's then those days where you're having a complete meltdown about attending a work training session or obsessively reading all about norovirus when your toddler passes it on to you then you go yep there I am. 

    I'm really keen yo reach out to other adults with similar experiences particularly with a later diagnosis and who are high functioning masking experts etc as I'm trying ready hard to give ways to manage the fall out of living with aspergers better so I can be happier and less anxious and there is less impact on my partner who is extremely long suffering.

    I would welcome connecting with anyone with kids and understand how parenthood has affected them for me it's been a huge challenge not just because it always is but definitely because of my autism which I'm still struggling with a lot 

  • Hi there I too was diagnosed later at 41 (2 years ago) and much of what you write and the replies you have already got really resonate. I've spent a lifetime struggling and finally understand the reason for much of the struggle which came as a huge relief however alas the struggle is still very much there. But the diagnosis has helped me start to unpick the issues I have and (very) slowly try and find some strategies. I got my diagnosis just as covid hit and just before I gave birth to my son as a first time parent so what then happened was for the next year or 18 months I kind of put the diagnosis and working through the impact to one side as so much else in my world had changed I had no space left for it.

    I've so much I could say but don't want to write an essay! I really relate to the feelings described about thinking you are not autistic enough as the making and strategies I have learned sometimes make me feel almost 'normal' and often I know I mask so well people have mo idea of the true struggle and inner turmoil. And that's the other resonance it's then those days where you're having a complete meltdown about attending a work training session or obsessively reading all about norovirus when your toddler passes it on to you then you go yep there I am. 

    I'm really keen yo reach out to other adults with similar experiences particularly with a later diagnosis and who are high functioning masking experts etc as I'm trying ready hard to give ways to manage the fall out of living with aspergers better so I can be happier and less anxious and there is less impact on my partner who is extremely long suffering.

    I would welcome connecting with anyone with kids and understand how parenthood has affected them for me it's been a huge challenge not just because it always is but definitely because of my autism which I'm still struggling with a lot 

  • Hi there I too was diagnosed later at 41 (2 years ago) and much of what you write and the replies you have already got really resonate. I've spent a lifetime struggling and finally understand the reason for much of the struggle which came as a huge relief however alas the struggle is still very much there. But the diagnosis has helped me start to unpick the issues I have and (very) slowly try and find some strategies. I got my diagnosis just as covid hit and just before I gave birth to my son as a first time parent so what then happened was for the next year or 18 months I kind of put the diagnosis and working through the impact to one side as so much else in my world had changed I had no space left for it.

    I've so much I could say but don't want to write an essay! I really relate to the feelings described about thinking you are not autistic enough as the making and strategies I have learned sometimes make me feel almost 'normal' and often I know I mask so well people have mo idea of the true struggle and inner turmoil. And that's the other resonance it's then those days where you're having a complete meltdown about attending a work training session or obsessively reading all about norovirus when your toddler passes it on to you then you go yep there I am. 

    I'm really keen yo reach out to other adults with similar experiences particularly with a later diagnosis and who are high functioning masking experts etc as I'm trying ready hard to give ways to manage the fall out of living with aspergers better so I can be happier and less anxious and there is less impact on my partner who is extremely long suffering.

    I would welcome connecting with anyone with kids and understand how parenthood has affected them for me it's been a huge challenge not just because it always is but definitely because of my autism which I'm still struggling with a lot 

  • Have a baby with a chromosome disorder such as Down syndrome.

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