Post-diagnosis mindset

Hello alushjoyhand 

I would advise you that you are not alone.  The experience you describe is remarkably similar to mine after diagnosis and that I have found to be described repeatedly by many others, in research papers and articles on the topic.

The question that hangs off this is can one " recover" from feeling scared and sad and how to perhaps go about it.

There is a host of advice as to how to move on after diagnosis - there are many people including myself who are able to say that they are improving post diagnosis.  I suspect those who raise completely beyond the need for help or support in this group is difficult to tell.  Maybe there is a group of autisitic people who post diagnosis have an absolutely brilliant life - at the risk of pessimism I have found it difficult to find the evidence of this.

Scared and sad could be synonymous with anxious and depressed - the evidence of this being experienced by a majority of autistic people is out there.

Where this feeling may come from?  I came across this in an article a few days ago (link to it on a post to the full text with due credit that I created recently because I thought it a really good article generally).  I've been naughty and removed some bits  of it like the references in it to hopefully make it more readable.

 "Studies also suggest that several traits commonly considered “inherent” to autism might be more accurately reframed as symptoms of repeatedly engaging in painful interactions.. “It is possible—perhaps even likely—that for some, ‘both emotional poverty and an aversion to company are not symptoms of autism but consequences of autism’.  ”This theme of “Neuronormativity as Disabling” thus adds crucial nuance.....” Rather than framing struggles with face-to-face interaction as inherent to autistic individuals, it highlights how such challenges are shaped by normative sensory demands and the “unwritten implicit social codes of the neurotypical majority"

So logically if one were able to remove oneself from painful interactions this is the first advice to take.  Realistically though unless one is blessed with a substantial bank balance and/or can enter some form of supported retreat this is a difficult one to achieve.  I am coming to think that it may be too great an expectation for neurotypical society overall to make adjustments for neurodiversity as their brains are not made for it.

Generally I think autistic people get on better with other autistic people than with neurotypical people - this site gives an opportunity for some respite.  There are other ways too.

"Be kind to yourself" is regularly given advice for this situation - and if you can, do I suggest.  There is a balance to take in what may be necessary withdraw and regeneration vs necessary exercise be it physical, mental and social.  My advice on this topic is "do less to do more" and that 70% gets an A in most exams.

On a good day earlier in the week I came up with this and it may be relevant to your question:

"I wondered if anyone else had made a connection between burnout and the mythological phoenix.

Google AI came up with this:

"To "survive burnout phoenix-style" means to recover and rise from it by first prioritizing rest and self-care, then setting realistic expectations and boundaries, seeking support from others, and finally reflecting on and reassessing your goals to rebuild a more balanced life that aligns with your values. This process takes time and involves self-reflection, reconnecting with passions, and celebrating small wins to find renewed joy and meaning”

Myths have a really important role in explaining natural events to people.

Proverbs do too e.g : "iron ore thinks itself needlessly tortured by the flame..." 

Here's to phoenixes burning and rising out there.

And any iron that is feeling the heat or taking a beating, think of the edge it will give you!"

Today I don't feel like the same positive minded person that wrote that - probably because experiences that have poured cold water on the fire over the past few days and because I'm having to go back to work on Monday where I expect by experience a bit of a deluge...

It's tricky, but if I could really boil the advice down I would say find a scheme and a strategy that gets you to a better place - psychologically, socially and physically.

This is tough because (not in a religious sense necessarily) you may find that your spirits need to be raised in order to do that.  So engage with something that "raises your spirits" first maybe.

Best wishes :-)

I truly appreciate the effort you have made to share this detailed post. I will be reading it in full on my lunch break today and may need a while to consider a reply.

Thanks alushjoyhand .  I found sharing this with you beneficial for myself as sometimes when we explain things to others we arrange our thoughts and explain them to ourselves along the way.  You may also have had an experience of what is termed in autistic circles an "infodump" from me - where autistic people dump a whole load of information that they've been accumulating for a while on other people.  Apologies that it is the case.  If there's anything you want to reply about I will do my best to respond appropriately.  :-)   PS I hope you enjoy your lunch!

Thanks alushjoyhand .  I found sharing this with you beneficial for myself as sometimes when we explain things to others we arrange our thoughts and explain them to ourselves along the way.  You may also have had an experience of what is termed in autistic circles an "infodump" from me - where autistic people dump a whole load of information that they've been accumulating for a while on other people.  Apologies that it is the case.  If there's anything you want to reply about I will do my best to respond appropriately.  :-)   PS I hope you enjoy your lunch!

alushjoyhand said:

do you ever experience extremes in self-worth or self-confidence?

Yes - well spotted alushjoyhand   These somewhat founded on a sense of self worth based on the misleading conclusions one may draw when applying neurotypical standards to oneself and having them applied to one by society.  This I have learned to understand may be correlated with a "spikey profile" in neurodiverse terms.  Significantly varying strengths and challenges across different cognitive or skill areas, rather than a "balanced", average profile.

Yours is an interesting use of the word "qualification" used very appropriately.  With the diagnosis yes one qualifies as autistic - I had to have this myself before I could start acknowledging it fully.  It was an "unknown unknown" for much of my life.  Became a "known unknown" immediately pre- and post diagnosis.  Now is becoming a "known known" as I acknowledge and integrate a substantially different paradigm or model of myself, my interactions and experiences.

In respect of problem solving, the creative approach you describe and have outlined and ably demonstrated in your response is admirable and I am inclined to suggest this strategy is an excellent one.  Also maybe somewhat typically autistic from what I have learnt and observed :-)

PC vs apple mac excellent analogy - it is possible to dig deeper to explore the communication differences if one wishes to.

I like the analogy to trains :-)  One might expand it to consider the use of points to change tracks, spend time in a quiet siding, stop at a station, adjust one's speed, be aware of momentum and inertia, decide upon destination and points of call and indeed the metaphorical journey thro' life.  There is also the possibility of getting of the tracks and observing the perspective from there.  :-)

I have spent time exploring models of reasoning for problem solving which I would like to share as I think it may be relevant to our conversation - apologies if not appropriate.

Hypothetico-deductive reasoning - broadly speaking the scientific method. 

Pattern recognition - a cognitive ability widely acknowledged for its prevalence in autistic people.

Abstract reasoning - This is often highly correlated with problem solving.  Personally I use this to try to get around problems with (In)flexible and intuitive thinking that appear to be part of my "spikey profile"  From your response I see a pattern that you perhaps do so too.

Best Wishes

Thank you. I think the volume of your text meant I felt it was appropriate to partition time to focus on it; since you have made the effort, so should I.

In terms of research, academic writing doesn't reach me like anecdote or analogy. I like personal stories to which I can relate, since as much as I enjoy (credible) statistics, I rarely find them to be emotionally affecting.

Recovery from fear and sorrow - trying that during this working week. Attempting to overthrow my pessimism through the focused meeting of objectives, in work and non-work contexts.

My opinion this morning is that, now I have my diagnosis (which I am viewing as a qualification), I must make best use of it.

I have had anxiety and depression in the past and they are definitely one of the reasons I feel scared at the end of summer. I was medicated after the COVID lockdowns, then tapered off, and have been striving to look after myself since - teetotal, regular exercise. My next aim is to introduce the structure of a consistent sleep pattern.

The article excerpts seem sensible to me. A life of compromise is tiring in the short and long term.

This weekend, I have approached public spaces with the magical secret of my autistic status, which permits me to be naturalistic in my delivery, and expect the other parties to do the same. Very much like our exchange - it is acceptable and natural to employ sufficient detail that you hope the other party will take as empathetic and considerate.

I was recently flitting between portable and self-evident analogies for what I now know to be autistic experience that would reach another person. Trite as it is, Mac and PC came to mind. One can recognise the other as an operational device, yet the software is incompatible.

I try to think well of others, regardless of neuro-status, yet have a bit of a guillotine when I feel wronged. It's both honest, [get this unpleasant person out of my life] and juvenile [I hope their car/oven/bicycle explodes].

I appreciate your advice on being kind to oneself.

I have a weird relationship with personal vs social value - think of Thomas the Tank Engine choosing his preference via free will (within the constraints of rails) vs the pressure to be a Really Useful Engine, appeasing Sir Topham Hat and the patriarchal, capitalist hegemony. Deep down, I wonder if I related to the underdog bullied into appearing as a normal engine, born to serve and pull coal, rather than an engine that flourishes on the scenic line, sharing its knowledge with the tourists.

Since you mention cold water, do you ever experience extremes in self-worth or self-confidence?

My spirits are raised by creative problem solving. Luckily, this is the core of my day job.