More Autistic After Diagnosis...

Obviously I know I'm not; I'm the same person, but it seems more apparent. For example at work I've started using a stress ball; I'm more aware of taking in distracting noises and feeling unable to work when there's a lot of distraction.

I'd tailor my stims in public to, for example scribbling lines and lines of figure 8's or drawing squares, whereas now I'll openly rub my neck or forehead. I've also had two meltdowns at work, whereas previously I'd somehow manage to avoid this happening at work.

I don't know whether any of this is a self-fulfilling prophecy type thing, or whether it is just a greater self-awareness and me feeling more able to be myself, with the strength provided by the diagnosis.

Anyone else experienced this type of reaction?

  • Not diagnosed but I noticed in my last workplace where bullying and stress was common place. I showed more traits

  • I'm coming up to a month now, and the hyper-alert / disabled feeling I had at first is not so bad, but I find I am re-adjusting to EVERYTHING. I also felt overwhelmed at work.

    At first, it was like having to face the world with an insane new haircut, lol.  But i realised no-one is hyper-aware except me.  However, I have decided to tell a maximum of 5 people in my professional network (i.e. current colleagues and / or people i have met in my work) and a maximum of 5 in my private life. And so far I have only told 3 in total and I'm waiting for the right moments. 

    Maybe those numbers will change eventually, and, well, I wish to control that number.  But it has made me choose really carefully who to tell. 

    I would like to give a small tip,  ( if you are able to go for walks or like walking), is to dress up weather-appropriate and take yourself for a good walk somewhere you like, and do all the thinking you need.  Several times I ended up having a little cry. I have been for bike rides although I know not everyone has that opportunity.

    Somehow when the walls aren't closing in it's easier just to breathe and take it in.   And take one day at a time.  Remember, everyone has up days and down days and different moods. 

  • Hiya. 

    I got a diagnosis last week and feel exactly the same. Yesterday was my first work day with the new diagnosis and I felt 10x more disabled than before despite nothing changing other than having the diagnosis and haven't felt able to face work today as it feels overwhelming all of a sudden.

    I've just posted asking for advice on this topic before seeing your post. I have no answers for you sadly but completely relate to what you've put in your post! Hopefully others can offer some advice.

  • My stims include air drummer, air guitar when walking, finger tapping that I have now noticed

  • I am me, have not changed, and have been like this all my life.

    Since a pointer was raised by a Mental Health First Aider then I started the journey to the point I have a diagnosis now.  This is now starting the journey from this point to fully understand more about these things I say/do.

    Anyway, my analogy would be Monty Python’s “Life of Brian” as you have seen it at least once.  Each time I watch it I find something funny I missed the previous times - that is where I have looked back at my life and suddenly it is the eureka/lightbulb moment that I can now see that it was ASC signs that I have.

    • One of them is to exhale a bit sharp through my nose without making obvious sound, a puff of air, and tense my stomach at the same time. Sometimes  I have to do it dozens of times in a row.
    • Another is a tune i've had stuck in a loop in my head for about 15 years. It plays in my head and i usually tap something to it or do something less noisy in time to the rhythm.   Sometimes at the same time as the one above.
    • I have tactile stims touching my face with my fingers and feeling for certain textures, constantly scanning .
    • Pulling out eyelashes and eyebrows for the relief after the pain.
    • If I'm more anxious I have to clamp my hands to the sides of my face (think "The scream" painting by Edvard Munch)
    • I jiggle my foot a lot while sitting down (doing it now)
    • At work (meetings etc) I doodle patterns like mad and fold any bits of paper or other material into shapes , my favourites are pentagons
    • I've noticed if i can't do anything else i rub my thumb and forefinger together in little circles.

    I have the urge to blink hard. I'd like to do something else instead, same re. the pulling eyebrows. I'm fed up having to draw in the gaps.

    I used to bite my nails badly, and although I pride myself with saying I gave up, I probably replaced that with ...lol I don't know... one of the above. 

    Maybe I have so many because my Aspergers has been hidden all my life and I have been busy trying to mask and contain my  anxiety.

  • I never realised the smell and touch was a thing I have a strong sense of smell and hearing also I can smell and hear things further than any in my social circle. 

    And I hate sticky things really dislike or scratchy things. 

    I have alway thought my balance was good but I'm super super clumsy especially my hands have you ever seen those cartoons where the drop somthing and then catch that thing only to keep on dropping it, that's my level of clumsy. 

  • Wow you are lucky how did you find someone who works with autistic adults?

    I could do with some guidance to be honest that is the only reason I'm on here just searching for similarities in the experiences and expressions of people on here and how they all cope because I'm not coping well at the moment. 

  • You have given us very interesting question, I have noticed that since my diagnosis I can clearly see what my autisic expressions are and have connected why I feel bad where as before I would just experience these thing and not know why I was feeling the way I was.

    I don't know if I attribute things that are not my autism though which makes me feel bad. 

    Some of these things I have attribute to my autism 

    1. I don't like loud noise
    2. Bright lights
    3. People talking at me for a long time and more so when I have got there piont! 
    4. People being to close to me
    5. Things being late which make me late
    6. People asking things from me without explaining how to do them
    7. I can't keep eye contact (although I try very hard to) 
    8. I don't like doors left open
    9. I can't turn my mind off the only time my mind isn't going one thousand miles an hour is when I'm asleep and even then I'm not sure as I wake exhausted, I think it's my main stim constant analysis.      But I don't think I have noticeable stims because I have trained not to reveal anything like that. What stims do you guys have? 
  • Hi

    Thanks for the support.

    I am just getting used to everything: this forum, my new Aspie identity, etc. 

    I guess "ashamed "  is just my clumsy words for something i did secretly. When i feel a meltdown coming or when i have sensations that might be emotions  (which are sooo hard to recognise, because my alexithymia is quite pronounced) , I usually experience nausea or a fizzing in my head (or head and shoulders). I have had this all my life. I have some tics that reduce the tension.  I try to do those secretly as well.    I would prefer if I didn't have the tics. I certainly don't want  them to get worse (e.g. at work).

    I looked online for other forms of stimming and tried them out to see if they were good.  If anyone had seen me, I guess it would have looked really weird. 

    I guess I felt a lot of shame associated with these secret things. I used an incognito tab in my browser. 

    I am not in any way suggesting others should feel ashamed.  As someone who doesn't feel many emotions, I think shame, anger, frustration are the main ones i feel.  Everything else is "meh" or "confusing meh". Hard exercise gives me a short "peaceful meh".

    But deliberately trying out someone else's stims is ...like trying on their shoes? I don't know, has anyone else tried it?

  • I'm ashamed to say have been trying out different stims

    Hey Darkshines, just wondering where the shame is coming from? Sorting out the real "us" from the mask is important and difficult sometimes, and exploration of behaviours is part of that. I relate to an inner voice accusing me of "making things up" - wonder if that's what you're experiencing?

    We shouldn't need to feel shame.

  • Oh wow, it's like you just read my mind. This is happening to me right now - just as you described.  I've been really worried about it too.   I have been wondering how much worse it's going to get before I reach a plateau. 

    In particular, I have been more aware of an awful "fizzy" feeling in my head that initiates the urge to stim or meltdown;

    I have been masking less, mostly at home;

    I have had a lot more elective silence;

    I've cried a lot at work;

    I have been more erratic out in public; 

    I've started to use different vocabulary;

    I'm ashamed to say have been trying out different stims in case i find something better than the ones I already have. But this is because i feel so awful.

    On the other hand, maybe there is a blessing.  I hope that if I can stim more, the way I want, maybe I don't get the urge to self harm as much. I am hoping to find out after some time.

  • I'm now aware that I am always rubbing my face, tapping my fingers,playing with my hair, bending my fingers, especially in stressful situations :)

  • Perfect. That's exactly how it is for me and what I'm saying/querying.

  • I've had them at work but not to the point where I'm openly crying in front of colleagues, and that's an example that emphasises the driver for the original post.

  • Yes, I've been more willing to 'do my own thing' in some areas since my diagnosis.

  • I guess I could see how years of pressure could build up to actually, in the long run, make you worse, as it frazzles your brain more after so much silent suffering. The silent suffering may seem like resilience at first but maybe it's just something that will make you become less resilient as time goes on and so eventually it's inevitable to deteriorate to be 'worse' at least for a temporary time. 

    So... my psychologist has mentioned 'trauma counselling' to me a couple of times in sessions which I kind of brushed off on the basis of "I haven't had any trauma to need counselling for..."

    Then more specifically she talked about ACT (Acceptance & Commitment Therapy) and I started looking into that and on a Wikipedia page discovered that:

    -----

    The core conception of ACT is that psychological suffering is usually caused by experiential avoidance, cognitive entanglement, and resulting psychological rigidity that leads to a failure to take needed behavioral steps in accord with core values. As a simple way to summarize the model, ACT views the core of many problems to be due to the concepts represented in the acronym, FEAR:

    Cards used as a therapeutic activity in ACT treatment.
    • Fusion with your thoughts
    • Evaluation of experience
    • Avoidance of your experience
    • Reason-giving for your behavior

    And the healthy alternative is to ACT:

    • Accept your reactions and be present
    • Choose a valued direction
    • Take action

    -----

    The 'experiential avoidance' link takes you to a page where you discover experiential avoidance is:

    "...attempts to avoid thoughts, feelings, memories, physical sensations, and other internal experiences—even when doing so creates harm in the long-run. The process of EA is thought to be maintained through negative reinforcement—that is, short-term relief of discomfort is achieved through avoidance, thereby increasing the likelihood that the behavior will persist."

    For me, that was a light-bulb moment... I mean what is ASD if not a continuous barrage of thoughts, feelings, physical sensations etc. which are negative/painful and therefore you seek to avoid?

    This paper had some interesting points :https://link.springer.com/article/10.1007/s10879-018-9383-1, specifically the points that (bold highlighting added by me):

    " Further, up to 85% of individuals with ASD present with alexithymia (Hill and Berthoz 2010) as well as a general tendency to intellectualize rather than experience and process emotions (Mazefsky and White 2014)."

    And...

    "Individuals with ASD are generally believed to lack empathy (Gillberg 1992). However, research indicates that individuals with ASD possess difficulties in self-understanding or theory of own mind (Williams 2010) as well as theory of mind (Baron-Cohen 1997) but not with affective empathy (Dziobek et al. 2007). Consequently, people with ASD experience higher levels of emotional distress and additional mental health difficulties compared to typically developing (TD) peers."

    This certainly fits with my own experience - looking back there are so many things that I 'dealt with' on an intellectual/practical level but NEVER on an emotional level, plus I've developed a 'trading system' where physical discomfort is used as a proxy for emotional pain e.g. I'll do a 10 mile trail run if I've had a bad day and need a way to get rid of the emotional baggage - as if I can sweat it out or burn it off with lactic acid...

    It's like a cupboard full of demons where the door is bulging out of the frame... it's harder to shove anything new in there without letting what's already there out, plus over time the demons locked away have bred/grown making them harder to keep locked up...

     

  • For me, I now realise more and spot the traits/behaviours more, until I have the full Diagnosis report:-

    1. Sounds - Yep but did not realise it was my condition before.

    2. Touch - never realised some of the things I experience are to do with my condition - did not even know I had a high pain threshold.  Same with proximity (see space and balance numbered bullets below) to things

    3. Taste - It adds up with the thread on Peppermint/strong mint/mint toothpaste/mouthwash as well as certain food types.

    4. Smell - What smell which I never realised?

    5. Vision - Light and headaches which I did not associate with anything other than too much UV light so I wore sunglasses (not to mention modern ergonomically designed cars to protect pedestrians and those Zenon headlights)

    6.  Space - I do not like certain proximity to some people, cliff edges, etc.

    7.  Balance - hate Rollercoasters, rock climbing/abseiling, ladders, looking down from height in towers/buildings

    I just took myself as I was but the jigsaw pieces start to interconnect now I realise I am different. 

  • I feel like this too; like I've somehow become "more autistic" since my diagnosis around 6 weeks ago. I think for me it is mostly because a) I've been working so hard to cover this stuff up and fit in with everyone else for so long that I'm now letting that cover slip a bit more among the people who know the diagnosis and b) I think the assessment process itself draws your attention to all the bits that you maybe thought were "normal" or didn't realise you do, so that sort of brings them all to the surface and makes you more aware of them as well. I definitely think that's true for the sensory stuff. I knew I had really acute hearing and that noise bothered me, but I hadn't realised how heightened my sense of touch is for example, so now I know that it's not normal to feel pain from certain things I'm noticing more that I do and questioning "why me?". So yeh, letting the cover slip and being more aware of the symptoms having been through the assessment process is what's caused it for me I think. 

  • I wouldn't say I'm more autistic but I am now painfully aware of my weaknesses, vulnerability and susceptibility to people with ulterior motives.   

    I normally mask very well - most of the time - but when I'm unsure of the situation, instead of bluffing like I used to because of my ignorance about what is actually going on, I will tend to go mute or shy away.   This might make me appear much more odd or more autistic in those situations.