Post-diagnosis mindset

I've just ordered this book, How to be Autistic by Rachel Morgan-Trimmer.

It is available as a free PDF via the above link, but I like to buy the odd physical book, and wasn't really held by Self-Care for Autistic People. 

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.

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!

Isn't it odd? I feel a little taller, and full of electricity in social situations, as if there is a caption 'this person is autistic, and that's alright', which makes me happy and nervous depending on my reading of the other party's apparent likey acceptance of interacting with a person with autism.

I have started offering the detail ('I have autism'; 'I am autistic') as a low-key qualifier of conversations, usually as a 'it's okay that I include this detail you may consider irrelevant, because I see a clear connection in topics'.

I can portray my emotional response as ordering something that seemed incredible (for me, it'd be a pristine Amiga A500, rescued from a dusty old factory corner), and is actually disappointing once you have it opened and set up - what I expected (an immediate and lasting satisfaction) is not what I am experiencing (a sorrow that the things I resent are forever).

This may well conform to the SARAH model/change curve - Shock, Anger, Resentment, Acceptance, Hope, it is too soon for me to reach the educated and (virtual) community-connected place of comfort.

Thank you for your reply. As slow as the genuine gratitude may germinate, I feel it for all the replies that are arriving.

Thank you for your reply.

SAD definitely begins in September. The weather can temper my perception of pretty much everything. Running is my best medicine, and I am staying up too late with Cult of the Lamb so probably need to obey Parental Controls, and attempt sleep well before midnight.

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.

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 :-)

Welcome to the community. I chose to self-identify rather than seek a diagnosis, but your description of those post-diagnosis feelings sounds all too familiar – the initial relief and sense of euphoria that at last I could make sense of myself and my relationships followed by the realization that my autistic identity would entail a radical transformation of who and what I thought I was.

Just one thought on the specifics of your post: you mention periods of relentless bleakness in the darker months of the year. Might this be seasonal affective disorder (SAD)? I’ve suffered from this for years and have learned to combat it by making daily use of a daylight lamp and getting outside every morning.

FishBerlin23 said:

I feel hyper alert of myself and surrounding all of a sudden analysing my behaviour and those of others.

Me, too. I've gone from feeling like an alien in a human suit to feeling like an alien psychotherapist in a human suit! To paraphrase The Police:

Every breath I take
And every move I make
Every bond I break
Every step I take
I'll be watching me

Hello, I have also just been diagnosed, and after the initial first week or two of yeay, I got the answer and the missing piece to my puzzle. I had a sudden awaking of wow this puzzle is actually far bigger then first thought and there are now more questions then before which led me to start reading so much trying to make sense of it all only to go into a hyper obsession and now my body is shutting down and I feel exhausted and utterly overwhelmed and I have to slow myself down to be more patient something I am terrible at. I feel hyper alert of myself and surrounding all of a sudden analysing my behaviour and those of others. I am getting there understanding it will take time so be kind to yourself. I am lucky to have friend who has just been diagnosed too so support by finding similar people is definitely helping. So you are in the right place. Also look out for local communities were you are this could be helpful too. 

Congratulations on your diagnosis and welcome to the community.

Following a diagnosis, it can be common for us to experience a lot of emotional dysregulation. Besides perhaps feeling some relief about now having an explanation for our past difficulties, this can also include working through a phase where we experience confusion, uncertainty, so-called "imposter syndrome", and/or (backward-focused) anger, frustration, grieving, and more. So please don't worry - it's normal! 

As for many others here, my own diagnosis turned out to be much more of the start of a new journey, rather than a conclusion full of instant solutions for my difficulties.

The NAS has a great set of articles focused on "after diagnosis", including one covering how you might feel during the subsequent days / weeks / months. You might find them of interest and/or helpful:

NAS - How you might feel after a diagnosis - includes perspectives from other autistics

NAS - Other advice covering post-diagnosis including:

• Talking about and disclosing your autism diagnosis
• Emotional support for family members after a diagnosis
• Formal support following an autism diagnosis
• What can I do if formal support is not offered or is not enough

Therapy (or counselling) is often recommended after a diagnosis, as a follow up action for your GP to arrange. If you prefer, depending on where you are in the UK, you may instead be able to self refer for talking therapy on the NHS.

Before arranging it, you might find it helpful to borrow or buy this book, which includes discussion of various types of therapy and counselling, together with advice on choosing the right therapist or counsellor - all from an autistic person's viewpoint. Several of us here have found it very helpful:

The Autistic Survival Guide to Therapy

This book also taught me some important principles and enabled me to make some immediate, helpful changes - perhaps you might find it useful, too:

Self-Care for Autistic People: 100+ Ways to Recharge, De-Stress, and Unmask!

Thank you very much.

If I were Lego, I'd put myself back together in a new configuration. I think it will take a few days.

Welcome to the community.

Please take comfort in that you are OK and I interpret that you are reassuringly human in your range of reactions (post-later diagnosis).

You won't need to take my word for it; as the below articles help to explain:

www.autism.org.uk/.../diagnosis

Also, I am pretty confident; other community members will, before long, add their voices in a similar manner too.

If you use the search bar within the community; you can explore key threads which match the range of things on your mind - top tip: page down through the initial search results to the bottom of the page and on the right hand side: select "advanced" where you can sort (e.g. by "recent") and other filters too.

(No question is ever "silly' here).

We are tolerant here of a cathartic "rant" too!

Generally speaking; "we get it" ...and if we are still puzzled: we are likely to be quite direct about seeking further clarification in our efforts to provide peer support to our fellow community members.