More Autistic After Diagnosis...

This concerns me.  

How do we know we're not just buying into the symptoms more and then acting 'more autistc'? as a result. 

For example, if you're having heart palpitations and then you read up about a heart attack you can convince yourself you also have chest pain, you may even start to feel chest pain because you convince yourself so much. Sort of like a placebo but rather than a placebo to make you better, it's a placebo that makes your worse? 

It could be a genuine 'unmasking' as people are saying, or it could be a self-fulfilling prophecy. Not sure which one it is myself. 


The reason I went for a diagnosis was that I realised I'm often overly stressed, that I'd spent a lot of my life sort of locking myself inwards so as not to act certain ways that are..... well...autistic!  Although the act of locking myself in often appears autistic too since it makes me very aloof, which I already naturally am to strangers, neighbours, just regular acquaintances but I mean it makes be extremely aloof because locking myself inward is a sort of shut down mechanism. And I started to realise due to certain troubles I keep repeatedly having, going through the cycle of thinking I can 'correct' myself next time, and then inevitably repeating the same behaviours, trouble, moods etc that I don't seem to be managing 'correcting' myself. 

And that a lot of my stresses are unknown and not verbalised. Often due to a lack of appropriate words, I could use to really explain a lot of the things I'm feeling. That plus I think I don't always know how I'm feeling, other than knowing its bad. 

Since diagnosis, I feel like the mask has been slipping. 

I was never able to mask my social awkwardness very much, and the fact I have trouble looking people in the eyes. 

But the things I've often masked is my true response to things, urges to 'stim' as it's called etc. 

I'm finding the mask has gone a bit on my moods too. Before I'd get stressed, have meltdowns and then lock the feelings back inside and never let anyone see. 

It's hard to know if it's a built up pressure thing over all the years and now with the diganosis I've felt more able to just let it loose or if like you say it's a self-fulfilling prophecy 

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.  

It's like having a bridge that is still managing to stand but its foundations are faulty and somewhere down the line those foundations are going to deteriorate further and also deteriorate other elements of the bridge due to the added pressure of being faulty. 

I'm not saying autism is a 'fault' so don't read into that. But if you're struggling internally with something and then finally you feel like you can let it out, it seems to me it possibly would be worse for a while...

But I'm not sure if it's a good thing or not at this point. A part of me feels guilty, like maybe I'm using autism as an excuse now. 

This concerns me.  

How do we know we're not just buying into the symptoms more and then acting 'more autistc'? as a result. 

For example, if you're having heart palpitations and then you read up about a heart attack you can convince yourself you also have chest pain, you may even start to feel chest pain because you convince yourself so much. Sort of like a placebo but rather than a placebo to make you better, it's a placebo that makes your worse? 

It could be a genuine 'unmasking' as people are saying, or it could be a self-fulfilling prophecy. Not sure which one it is myself. 


The reason I went for a diagnosis was that I realised I'm often overly stressed, that I'd spent a lot of my life sort of locking myself inwards so as not to act certain ways that are..... well...autistic!  Although the act of locking myself in often appears autistic too since it makes me very aloof, which I already naturally am to strangers, neighbours, just regular acquaintances but I mean it makes be extremely aloof because locking myself inward is a sort of shut down mechanism. And I started to realise due to certain troubles I keep repeatedly having, going through the cycle of thinking I can 'correct' myself next time, and then inevitably repeating the same behaviours, trouble, moods etc that I don't seem to be managing 'correcting' myself. 

And that a lot of my stresses are unknown and not verbalised. Often due to a lack of appropriate words, I could use to really explain a lot of the things I'm feeling. That plus I think I don't always know how I'm feeling, other than knowing its bad. 

Since diagnosis, I feel like the mask has been slipping. 

I was never able to mask my social awkwardness very much, and the fact I have trouble looking people in the eyes. 

But the things I've often masked is my true response to things, urges to 'stim' as it's called etc. 

I'm finding the mask has gone a bit on my moods too. Before I'd get stressed, have meltdowns and then lock the feelings back inside and never let anyone see. 

It's hard to know if it's a built up pressure thing over all the years and now with the diganosis I've felt more able to just let it loose or if like you say it's a self-fulfilling prophecy 

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.  

It's like having a bridge that is still managing to stand but its foundations are faulty and somewhere down the line those foundations are going to deteriorate further and also deteriorate other elements of the bridge due to the added pressure of being faulty. 

I'm not saying autism is a 'fault' so don't read into that. But if you're struggling internally with something and then finally you feel like you can let it out, it seems to me it possibly would be worse for a while...

But I'm not sure if it's a good thing or not at this point. A part of me feels guilty, like maybe I'm using autism as an excuse now. 

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:

• 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...

How do we know we're not just buying into the symptoms more and then acting 'more autistc'? as a result. 

This has also bothered me a lot.

But I'm not sure if it's a good thing or not at this point. A part of me feels guilty, like maybe I'm using autism as an excuse now. 

And that.

I'm still not 100% sure where the dividing line sits between things in me that are 100% rooted in my own ASD and which are verging on my cultural appropriation of autistic culture, if that makes sense! But what I do know (or maybe I should say what I am reasonably confident of) is this:

• Masking is real, and it 100% makes sense to me that the effort of masking led to my burnout
• I'm aware of an "inner me" that is (pretty much?) unchanged as a result of the mask falling away (but was previously hidden behind the mask), and I'm pretty confident that I know how autism shapes the experience of that inner me
• I've read quite a lot of impacts of autism that I can say "nope, I don't experience even a shred of that"
• There is a remainder of things associated with autism than I'm less sure about - for example, I have a few relatively subtle behaviours that may or may not be stims, and may or may not be an absolute consequence of my ASD.

We are all susceptible to various biases and distortions (e.g. confirmation bias) & this is one reason that I value the objectivity of my NHS diagnosis.

I feel like I'm rambling a bit & not really helping - just saying that I feel the same but I do think that there seems to be a part of the journey to diagnosis that is almost exploring your own autism to see which bits are genuinely there, which is necessary after decades of masking and hence something that we shouldn't feel guilty about?

Yes and most of that is where I'm at,  hence the reason for starting the thread.

I feel like my patience for things has gone to zero. I used to put up with much, in many ways, but now I'm a lot more direct. I do say "I can't help it" and I get back "you can't use autism as an excuse". I don't know if this is better or worse. I think overall it's better to know you're autistic. But certainly it messes with how you've programmed yourself to live in an NT world. I've definitely been told I behave differently now. But in some ways that could also be attributed to getting older and caring less about what other people think (or less about trying to come across as "normal")