Very late Diagnosis - identification at a late, some notes..

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icecreamcart
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08 Dec 2019, 2:30 pm

I do not “HAVE” ASD, I am ASD (probably). We are NOT a disease. We are a way of being, perhaps even the future. Albeit in the process of evolution. I am not defective.... have you seen the other 99% lately?

• ability to focus on a task for a long period of time (even years)
• above-average intelligence with adept logical reasoning ability (seeing the obvious)
• ability to understand and simplify complex sets of data.(seeing the heart of it)

can socialise very well, but it’s at the cost of intellectual and emotional exhaustion, and this can confuse others in terms of sometimes seeing social competence but other times seeing a great need for social withdrawal and isolation.

Unfortunately, impaired cognitive empathy (or theory of mind) is a common characteristic of autistic people,

I just ask. I know I don’t know, so I ask, gently (ok, so I think it’s gentle).

It is generally accepted that the happiest autistic adults work in their area of special interest.

Michael Fitzgerald describes the consequences of not diagnosing ASD before 13 years of age as ‘devastating’. ‘The consequences include deep depression, suicidal ideas, poor school performance, academic deterioration, dropping out of school, anxiety

Yeah yeah, had all those

The three most commonly accepted co-occurring mental health issues are depression, pathological anxiety states and obsessive–compulsive disorder (OCD).

And those, apparent rather than real...

Many late-diagnosed autistic adults experience mental exhaustion due to intense mental activity, and from trying to survive in a ‘strange’ world using intellect rather than instinct and intuition.

Alone time is required, an hour walking (music is nice), swimming preferably alone, or one or two other activities that free my mind. Best I do not name my (past) useful prescription medication.

ASD can be a very painful affliction because many of us who have it may appear normal, so some people may disbelieve us. Most of us have above-average intelligence and we tend to be more sensitive than neurotypical people, so acts of bullying and other abuse tend to cause us more pain and suffering.

Aye, to this day, suffering the idiots.

Abandonment: Undiagnosed autistic adults have a much higher chance of being rejected or abandoned by their parents and relatives than do diagnosed children.

Oooh. I had forgotten this one. Boarding school from age 8 to 18. Left there one day without warning... cried myself to sleep for weeks. Became tough. ?

Very often we ask logical questions innocently, genuinely trying and wanting to understand the relationship between ‘things’.

NTs just don’t like being questioned do they?

Autistic individuals often have great difficulty coping with conflict.

I turn down the telly to avoid it. Debate yes. Conflict no. I avoid soap operas because they are crammed with conflict. I cringe.

Most, if not all, autism and mental health professionals claim that diagnosis of ASD is advantageous because it enables us to be aware of our strengths and weaknesses. This vital information also explains why we have always been treated differently. The recently diagnosed autistic adult may also gain access to a range of support services that include coaching, mentoring, counselling and support groups;

Had to think about this as it seems to be the core of the drive and pressure to get diagnosed. For about fifteen years I paid for psychotherapy, so NOT psychiatry. The former is “talkies”, the latter is drugs, is how it was explained to me. Now many years ago. I tried a (American) psychiatrist a few years ago, lying on a couch and using prescribed drugs was ineffective for me so I stopped; that was state funded.
I think looking back those weekly psychotherapy sessions, after which I always felt great, saved me from a vast array of negative consequences. A great deal of “hypnotherapy” was involved, and it worked for me. I know very well it does not work for others.


Self-assessment Self-assessment (or self-identification) is, of course, a personal opinion which may be validated later by a clinical psychologist or psychiatrist. This stage does not involve any third-party autism professionals, psychologists or psychiatrists, so it is limited to desk research and communication with family and friends.

I disagree. That word LIMITED. Also the expression “desk research” seems to want to obscure the availability of the internet, replete with its vast indeed unlimited array of tests, books, papers etc including the latest DSM currently 5 . It also omits mention of my sixty years of experience. I mean really? This leads me to suspect what is coming next, bearing in mind it is all subjective anyway, if not perhaps not so in due course in the not too distant future.

friends often much older or younger

Yes. Surprised. Never seen that mentioned before.

lack of friends and social life
uncomfortable in large crowds and noisy places

Yes, and others.

Restricted, repetitive patterns of behaviour, interests or activities:
obsession with ‘special interests’
collecting objects (such as stamps and coins)
attachment to routines and rituals
ability to focus on a single task for long periods
eccentric or unorthodox behaviour
non-conformist and distrusting of authority
difficulty following illogical conventions
attracted to foreign cultures
affinity with nature and animals
support for victims of injustice, underdogs and scapegoats.

ALL of those. All “under management” of course.
Gosh.. some of those are very powerful, affecting my life choices daily..


Ok that’s 50% of the book, and the rest is case studies.

Anton



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08 Dec 2019, 7:07 pm

I have gotten along better with people older and younger than me.

I am a year younger than you and was not diagnosed until age 55. While there was a lot of pain because of not getting diagnosed for some reasons you mentioned I was glad I wasn't. For one thing if I was diagnosed with Autism as a child back in the 60s I would have been put away in an institution never to be heard from again. If I was diagnosed as a child in America now I would be subject to 25 to 40 hours a week of behavioral therapies that probably would destroy me mentally.

Speaking of mentally, many of the "co morbid" conditions are real mental illnesses. Just because a lot of them are a caused by disadvantages being a small minority in an NT world does not make them any less real.

I do not think I would have had the maturity to handle a label that says what I can not do until at least my thirties. I have been on wrong planet since 2013 and I have seen so many frustrated, no self esteem young members obsessed with what they can't do. What gets to a lot of them at a young age is that Autism is a life long condition that to them means the rest of their life is going to be a failure.

I self identify as "Autistic" rather than "person with Autism" because as it says in my signature Autism is a part of who I am.

I seriously doubt we are the next stage in evolution. Autistics have probably always been around. We can't know for sure because we can't accurately retro-diagnose. We do know there is evidence of people with autistic traits a long long time ago. IMHO the whole autism superpowers and next stage of evolution ideas is an over correction to the lack of self-esteem caused by the horrors inflicted upon us. Autism is a human condition involving strengths and weaknesses. In that way it is just like other human conditions and individuals. What differs from most other human conditions is that it is a specific set of traits that taken as a whole differ from most others.


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08 Dec 2019, 7:15 pm

What differs from most other condition, in my opinion, is the amount of stigma that AS people have to contend with, stigma based on myth, propaganda, ignorance, and poorly designed research which is based on earlier poor research - the findings of which are invalidated by outrageous sampling bias, but parroted daily as "scientific facts about autism".
All AS people are oppressed by this, whether they know it or not.



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09 Dec 2019, 11:38 am

icecreamcart wrote:
I just ask. I know I don’t know, so I ask, gently (ok, so I think it’s gentle).

The TOM gets me. I can imagine the five things an NT is thinking but don't know. In the meantime, the NT knows the one thing I am thinking? Noooooooo. TOM goes both ways. I think there are updated studies about that.

icecreamcart wrote:
Michael Fitzgerald describes the consequences of not diagnosing ASD before 13 years of age as ‘devastating’. ‘The consequences include deep depression, suicidal ideas, poor school performance, academic deterioration, dropping out of school, anxiety

Yeah yeah, had all those

I did too. Are those things reduced for those diagnosed before 13? (I read that DX during teenage years can be very disruptive.) Our neighbor was diagnosed ASD young; she's in college now and has ongoing anxiety, but perhaps has "escaped" those other items? I hope so. I don't know.

icecreamcart wrote:
Aye, to this day, suffering the idiots.
NTs just don’t like being questioned do they?

LOL ------ yes.

icecreamcart wrote:
Oooh. I had forgotten this one. Boarding school from age 8 to 18. Left there one day without warning... cried myself to sleep for weeks. Became tough. ?

Aww. My mom emotionally abused me, and she is AS like. She inadvertently passed on (some) past abuse; (she suffered far greater abuse.) I hope to break the majority of that cycle with my ASD daughter.

icecreamcart wrote:
Had to think about this as it seems to be the core of the drive and pressure to get diagnosed. For about fifteen years I paid for psychotherapy, so NOT psychiatry. The former is “talkies”, the latter is drugs, is how it was explained to me. Now many years ago. I tried a (American) psychiatrist a few years ago, lying on a couch and using prescribed drugs was ineffective for me so I stopped; that was state funded.
I think looking back those weekly psychotherapy sessions, after which I always felt great, saved me from a vast array of negative consequences. A great deal of “hypnotherapy” was involved, and it worked for me. I know very well it does not work for others.

Self-diagnosis in my mind is a diagnosis. One can get an ASD therapist and attend (some) support groups (which are very useful to me); one doesn't have access to case workers and the such (which I don't require at this time). I am doing EMDR right now and my AS-like mom found hypnotherapy VERY helpful. I asked my assessor about medications and he did not recommend them in my circumstance. (I was prescribed meds previously when I was misdiagnosed as Bipolar.)

icecreamcart wrote:
Ok that’s 50% of the book, and the rest is case studies.

You did get farther than I have. Ha!

Thanks for keeping in mind the "rude" reference I was looking for. It's not those you referenced on your other post, so it must be in another book I am reading (I am reading 5 at once). Sorry for the inconvenience; I appreciate your effort.

I see you related to many (most?) characteristics. I do too. I feel like the authors are writing about me. How do they know? :wink: And it's not a personality, it's a neurology. Huh. Half the memoirs I read could have been written by me (the half with the AS outgoing, expressive type).

For those of us that can, we've done a good job pretending. So tired of pretending.



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09 Dec 2019, 1:03 pm

@sharon

Quote:
So tired of pretending
.

I’ll say. Just Weary of it.

@anonanon, sure the evolution thing is just a nice idea, something in the form of a positive mildly amusing dream to focus upon instead of some defective nightmare. I don’t view myself as defective, I am simply me, who I am. Like everyone else has to be accepted for who they are, me too. Do I want-a certificate of my defects.. ? No. I prefer to leave the world in doubt. Suits me being seen as eccentric etc. That’s fine.

The more I hear/read in here the more I think I dodged a bullet with my years of psychotherapy. Did she know? Doesn’t matter.

Can us ancient types support the youngsters in some way? So much of what I see I just want to give them a hug and tell them we understand and everything will be ok: sort of thing.

Anton

P.s. what’s TOM?



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09 Dec 2019, 5:50 pm

Theory of Mind. Something about the studies sit wrong with me. Like the one of "false belief". I sometimes (often) look in the unlikely places first. Plus my sister always moved my stuff around. I'd be an idiot to look in the place I last saw something. Yet the studies' premises are often that my perspective is a "false" belief and shouldn't be attributed to others. I find amazing things with this premise. Seems a valid, if unusual, way to do things.



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11 Dec 2019, 3:42 pm

Yeah!

DON’T MOVE MY STUFF!!



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11 Dec 2019, 10:40 pm

[quote="ASPartOfMe"]I have gotten along better with people older and younger than me. quote]

I was diagnosed at 65, having self-discovered a year or so before that. In my 70s now and like APOM, so glad I wasn't diagnosed young. It would have held me back in all sorts of ways.

Younger and Older Friends: this is very true of me, and always has been. One reason for this possibly (at least in my case) is that much younger friends have found me a trustworthy mentor and I have found my older friends to be trustworthy mentors. I tended to initiate the friendships with my younger friends, and the older friends tended to initiate their friendships with me. There were some very large age differences and others not so large. I was 38 years older than one of my closest friends (we are still friends) and he is the only obvious aspie.



icecreamcart
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13 Dec 2019, 4:54 pm

Seems notable (friend ages), do we have any idea why?
That said my best friend was same age as me, passed away in2017 sadly.
Not that I have many friends, just those who know me and are still my friend.
Antonio



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18 Dec 2020, 8:09 am

This is a great thread, I know it is OLD being from 2019, but I wanted to say how much I appreciate the thoughts and feelings in this conversation. I am still new to the forum and still exploring threads. So much good input, so glad to find other older folks are here too.



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13 Mar 2021, 7:28 am

Very definitely an excellent thread. Well worth necro'ing :)

Theory of Mind does indeed cut both ways. I watched an interesting video that covered the "Double Empathy Problem" - as "bad" as we are at "reading" NTs, it seems that NTs are bad at reading us.

They even did an experiment with a game of what we Politically Incorrectly used to call "Chinese Whispers" involving 3 groups:

One group was entirely made up of neurotypical people, another entirely made up of autistic people and the third made up of a mixed group containing both Aspies and NTs.

The result was: both homogenous groups performed very well at conveying the message down the line with minimal distortion. The heterogenous group resulted in a completely garbled message. This clearly indicates that NTs communicate well with NTs, autistic people communicate well with autistic people and we both suck at communicating with each other.

Exactly how badly NTs read Aspies has been a recurring theme in my life and I suspect it has been in the lives of many others here.

Years of people making assumptions about what I'm thinking and why I'm doing things - and attributing motives to me based on NT behaviour.

A recent debate in the comments section on a YouTube video by Paul Micallef from Aspergers From the Inside springs to mind.

Paul had pointed out that autistic people often withdraw without warning when they've become "peopled-out" and explained why. In the comments, some NT said "this is ghosting, it's what people do to manipulate others and it's wrong" and it wound up in an argument (in which I became involved) between Aspies and NTs with a couple of NTs basically saying "we will assume that you are maliciously ghosting us" - despite the fact they had just been told that it's not deliberate or malicious and just part of being autistic.

So it seems that even outright telling some NTs that you're not being deliberately malicious is not enough to prevent them from attributing malicious motives to our actions. Double Empathy Problem in spades!

It brought to mind the number of times I've been accused of malicious intent or being "manipulative" or had motives attributed to me over the years and having been outright called a liar when I said there was no ulterior motive or intent to manipulate.

Specifically, one more recent occasion where a former girlfriend berated me at length (in person the next day and later via Facebook over the next two or three days) because she could not believe that I did not pick up on what to her were glaring social cues nor could she believe that I was oblivious to those cues because I was so intent on solving a computer problem. No, it had to be that I was deliberately snubbing her in order to get into the pants of another woman (into whose pants I did not get, on the grounds that I had no desire to).

The ultimate irony of that occasion, was that this was a woman who was all about people being "authentic" - except, it appears, when they're being authentically autistic... we can't be having any of that!

So many NTs just judge us by their own social conventions.
We have difficulty making eye contact - we're obviously being dishonest. We learn about eye contact and force ourselves to do it and we're staring at them in a creepy manner. We explain ourselves carefully and we're clearly just making up excuses. We withdraw from social contact and we're snubbing/ghosting them. We have a meltdown and we're having a "temper tantrum" to manipulate/coerce them. We get interested/immersed in something and we're deliberately ignoring them because we're annoyed with them.

Much is made of our lack of cognitive empathy, our inability to read when someone is upset or scared or sad or happy. There's even an Empathy Quotient test - I got 23 out of 80... such a low score is in keeping with autism spectrum "disorder".

I'm willing to bet that if we got together, we could create an "Empathy Quotient" test that autistic people would pass and neurotypicals would fail dismally.


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Autism Quotient (AQ) test: 35/50
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Systemising Quotient (SQ) test: 89.0

Diagnosed 29 Jan 2021 - ASD Sev. 1 (Aspergers)


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13 Mar 2021, 10:00 am

Wolf1066 wrote:
Very definitely an excellent thread. Well worth necro'ing :)

Theory of Mind does indeed cut both ways. I watched an interesting video that covered the "Double Empathy Problem" - as "bad" as we are at "reading" NTs, it seems that NTs are bad at reading us.

They even did an experiment with a game of what we Politically Incorrectly used to call "Chinese Whispers" involving 3 groups:

One group was entirely made up of neurotypical people, another entirely made up of autistic people and the third made up of a mixed group containing both Aspies and NTs.

The result was: both homogenous groups performed very well at conveying the message down the line with minimal distortion. The heterogenous group resulted in a completely garbled message. This clearly indicates that NTs communicate well with NTs, autistic people communicate well with autistic people and we both suck at communicating with each other.

Exactly how badly NTs read Aspies has been a recurring theme in my life and I suspect it has been in the lives of many others here.

Years of people making assumptions about what I'm thinking and why I'm doing things - and attributing motives to me based on NT behaviour.

A recent debate in the comments section on a YouTube video by Paul Micallef from Aspergers From the Inside springs to mind.

Paul had pointed out that autistic people often withdraw without warning when they've become "peopled-out" and explained why. In the comments, some NT said "this is ghosting, it's what people do to manipulate others and it's wrong" and it wound up in an argument (in which I became involved) between Aspies and NTs with a couple of NTs basically saying "we will assume that you are maliciously ghosting us" - despite the fact they had just been told that it's not deliberate or malicious and just part of being autistic.

So it seems that even outright telling some NTs that you're not being deliberately malicious is not enough to prevent them from attributing malicious motives to our actions. Double Empathy Problem in spades!

It brought to mind the number of times I've been accused of malicious intent or being "manipulative" or had motives attributed to me over the years and having been outright called a liar when I said there was no ulterior motive or intent to manipulate.

Specifically, one more recent occasion where a former girlfriend berated me at length (in person the next day and later via Facebook over the next two or three days) because she could not believe that I did not pick up on what to her were glaring social cues nor could she believe that I was oblivious to those cues because I was so intent on solving a computer problem. No, it had to be that I was deliberately snubbing her in order to get into the pants of another woman (into whose pants I did not get, on the grounds that I had no desire to).

The ultimate irony of that occasion, was that this was a woman who was all about people being "authentic" - except, it appears, when they're being authentically autistic... we can't be having any of that!

So many NTs just judge us by their own social conventions.
We have difficulty making eye contact - we're obviously being dishonest. We learn about eye contact and force ourselves to do it and we're staring at them in a creepy manner. We explain ourselves carefully and we're clearly just making up excuses. We withdraw from social contact and we're snubbing/ghosting them. We have a meltdown and we're having a "temper tantrum" to manipulate/coerce them. We get interested/immersed in something and we're deliberately ignoring them because we're annoyed with them.

Much is made of our lack of cognitive empathy, our inability to read when someone is upset or scared or sad or happy. There's even an Empathy Quotient test - I got 23 out of 80... such a low score is in keeping with autism spectrum "disorder".

I'm willing to bet that if we got together, we could create an "Empathy Quotient" test that autistic people would pass and neurotypicals would fail dismally.

We, the very late diagnosed are the survivors. Battered, bruised, not what others expected, often not what we expected, but still here. That is something to remind ourselves, to be proud of. Not necessarily proud of being autistic, that is how we were born but overcoming the obstacles to get here.

Autism and the double empathy problem: Implications for development and mental health - British Journal of Developmental Psychology
Quote:
This article proposes a link between autistic people being misperceived by the neurotypical majority and their being at risk of poor mental health and well‐being. We present a transactional account of development in which the misperceptions (and consequent behaviour) of the neurotypical majority influences the perceptions and behaviour of autistic people such that they become increasingly separate and indeed isolated from mainstream society. This jeopardizes their mental health and prevents autistic people from developing to full potential. The situation is not only problematical for the development of autistic people but is also to the detriment of wider society, in so far as autistic people are effectively prevented from contributing fully. This account assumes that some (not necessarily all) autistic people yearn to be included, to be productive and to be useful. It thus directly opposes accounts that view autism as an extreme case of diminished social motivation.


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13 Mar 2021, 3:13 pm

ASPartOfMe wrote:
We, the very late diagnosed are the survivors. Battered, bruised, not what others expected, often not what we expected, but still here. That is something to remind ourselves, to be proud of. Not necessarily proud of being autistic, that is how we were born but overcoming the obstacles to get here.

Autism and the double empathy problem: Implications for development and mental health - British Journal of Developmental Psychology

Many thanks for that link. Just downloaded the pdf for my files and proper perusal.

In addition to we very late diagnosed, there are the undiagnosed and the never diagnosed. Generations before us that lived and died not knowing the reason why they were different from everyone else and most likely internalising the negative views to which they were subjected.

At least one of my parents was undoubtedly autistic and never diagnosed because there was no diagnosis to be had.

I sometimes told my mum that I didn't think I belonged here and that I didn't think I was the same species as everyone else. She did not think much of this and it certainly didn't worry her - it wasn't until recently that it occurred to me that the reason for that may have been because she felt the same way most of her life and thought that everyone feels like that.

She certainly had "special interests" and my dad was extremely good at technical systems, especially engines. Hardly grounds for an official diagnosis in either case, but enough to "make you go hmmm".

They both also perpetuated a lot of the negativity and hammered home (sometimes quite literally) the message, "act normally". Of course, if they were autistic, they would have been similarly pressured into conformity and semblance of normality and fed the line that their behaviour was deliberate/willful/contrarian etc.

We're indeed survivors - and the fortunate ones at that, as we finally did get a diagnosis and can thereby understand ourselves and put our lives into perspective. We can move forward knowing our strengths and weaknesses; lean on the former and make conscious efforts to avoid the latter. We can know - at least within ourselves even if people don't believe us - that what we feel is valid and we can know we're not as alone as we may have once thought we were.

And, yeah, we can be proud of having made it. I look back at the self-loathing and self-harm and suicidal ideation of my youth and feel proud of myself for overcoming that - despite the fact that the psychologists I saw had absolutely no idea of what they were dealing with and therefore lacked the tools to properly deal with it.


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Autism Quotient (AQ) test: 35/50
Empathy Quotient (EQ) test: 23/80
Systemising Quotient (SQ) test: 89.0

Diagnosed 29 Jan 2021 - ASD Sev. 1 (Aspergers)


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14 Mar 2021, 8:26 am

I'm 43, and self-diagnosed about a year ago, maybe less than that. I registered here a few months later, but I'm not sure how long it took me to get past the initial realization. In some ways, I'm still dealing with it. 42.5ish years of being so very different and not understanding why. I'm glad that I'm figuring it out, it's just a lot to deal with sometimes.
I almost completely identify with the OP. Almost all of that sounds like me. I wonder if it would have been different if I had been dx'ed, but then again Asperger's was added in '96 so I was well over 13 by the time I even COULD have been dx'ed. I wonder if it would have improved things for me, or if it would have held me back somehow. I see myself as maybe likely to hold myself back or "fall into" the dx, but then again that's me speaking from the memory of serious depression from about 11 or 12 until maybe my early 20s. Not to say that I don't still struggle with it, but now I don't feel as much at risk. I also have more obligations now, and that's actually helpful (wife and 6-year-old, both of whom I love too much to do that to them.) I wonder how much of that depression has been neurochemistry and how much has been "why does almost nothing make SENSE???"
I am glad to have a better perch to view my life from, I'm glad that most things make more sense now, but sometimes it's hard not to have the feeling of "what might have been..." I try not to spend too much time with that, it's not actually helpful to me in any way, but sometimes I don't get to choose which way my mind points. Anyway, I agree that this is a great thread to necro, if only for the others who fit that OP so well. I keep coming here and reading and posting because this place makes me feel less alone in the world.



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14 Mar 2021, 11:54 am

I'm a clinician working with children with Autism. Mental Health Issues and Intellectual Disabilities

Self diagnosed many years ago, formally diagnosed at the beginning of 2020 aged 60

I mask far less now than I used to and am calmer and less stressed than I have ever been


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14 Mar 2021, 12:32 pm

Velorum wrote:
...I mask far less now than I used to and am calmer and less stressed than I have ever been

So glad for you. That is inspiring for me. I'm approaching 50 and still in the rat race with young children. Very stressful. I look forward to finding balance in being myself - to have less inward stress as I anticipate less outward stress over time (understanding they are interrelated :D ).