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ASD, adult diagnosis

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Removed User 22 May 2021

First, explanation for the new account.. I’m a longtime member who doesn’t want to be identified in this context. 

ive recently been diagnosed with ASD (would have been Asperger syndrome previously) at 40. Wondering if anyone else has had similar experiences as I suspect prevalence is quite high amongst some of the professions common here and near solitary pursuits like climbing and walking also tend to go hand in hand..

for me it’s been a shock, a revelation and a voyage of discovery in many aspects of life explaining a lot of my strengths and struggles over the years, especially with mental health, relationships and friendships.

i know various posters have had similar struggles and while I’m not saying everyone has ASD (obviously not!) I wonder if it’s out there.. 

One rule: this thread is for everyone’s support so be nice or post elsewhere.. ;D

 freeflyer 22 May 2021
In reply to Removed Userafrequentposter:

All the best engineers I've ever worked with have been somewhere on the spectrum but as far as I know undiagnosed, and I would include me in that group, especially in my twenties and thirties, perhaps less so now. It slowed me down socially, but the extra time spent working paid dividends!

I guess some people might prefer to keep such a diagnosis private, however I think your approach is much more powerful and could help you immensely in dealing with whatever issues come up. I expect you may have heard that Elon Musk recently went public with his diagnosis:

https://www.medpagetoday.com/blogs/celebritydiagnosis/92658

One point which concerns me is that I feel it's important to make the diagnosis work well for you. It may be a source of much comfort and support, but there is also the possibility that a 'black and white' medical reading of your personality may limit your understanding of the different ways that you can grow as a person. A label can be a good thing, and a bad thing.

I'm fairly sure you'll get plenty of support on here.

 hang_about 22 May 2021
In reply to Removed Userafrequentposter:

A friend of ours had the same diagnosis at the same age. It helped her understand some aspects of her life. I'd say she found the diagnosis a very positive thing. She's very creative but also struggled with some things, the latter closely linked to the ASD.  Voyage of discovery  is exactly it!

 Bob Kemp 22 May 2021
In reply to Removed Userafrequentposter:

I don’t, as far as I know, have ASD, but I was not so long ago diagnosed as having adult inattentive ADHD, which is frequently comorbid with ASD, so I can very much identify with your experience.
I’ve had similar struggles over the years, and I’m still coming to terms with what my life might have been if I’d had an earlier diagnosis. 
Climbing and the outdoor world has been one of my main supports over the years. I gravitated to climbing because i couldn’t really get on with team sports, and stayed with it because it gave me a focus during bad times, so you may have a point about about climbing and ASD.

Re anonymity- I thought carefully about making a new account before mentioning my ADHD  on here but part of my developing understanding of this ‘condition’ has been finding about the idea of neurodiversity as opposed to seeing ADHD as a disability. I eventually decided that meant I didn’t need to be anonymous, but I quite understand why you would want to keep discussion about this separate from your other postings. 

As I mentioned above, ASD and ADHD are often found together, so you may want to get an assessment for ADHD too. Anyway, I hope you get good advice and help, and start to benefit from having a better understanding of your life to date and how to go on in future.

-Bob

 MeMeMe 22 May 2021
In reply to Removed Userafrequentposter:

I’m not diagnosed but I’m on the waiting list to get assessed, and I’ve talked to various people, including professionals, who think it’s likely.

I’m still coming to terms with the idea and have very mixed feelings. On the one hand it really explains a lot of things in my life amd gives me a whole different perspective. On the other hand I feel a bit like I’m not ‘normal’ and it’s not that I’ve never found the right social group and relationships but that I’ll never find them. That I’ll always feel awkward and never feel comfortable.

It’s also taken a toll on my relationship with my partner as we’ve both looked on it with a different perspective. Some things that weren’t working will never work between us no matter how I try because my brain just doesn’t work like that. The change in thinking has been so significant that it’s led to our relationship breakup and me moving out which a bit of a downer to say the least!

I’m still coming to terms with it all and talking about it is part of that so it’s great that you’ve posted. And don’t feel the need to hide, it’s nothing to be ashamed of, there are a lot of us out there!

Removed User 22 May 2021
In reply to MeMeMe:

Hi YouYouYou.. I had a very similar experience with my relationship with my wife, which thankfully we are working through (following a lot of counselling and advice). If you want to PM me on this please feel free.

Thanks everyone for the encouragement.. I’m tempted to comment on the fact there are no dislikes on this thread, but that’s tempting fate, surely (or phantom disliked at the very least..)

 wintertree 22 May 2021
In reply to Removed Userafrequentposter:

Sorry, rant alert; hopefully a positive rant.

I am quite badly dyslexic (possibly these days it would be called dysgraphia in my case?)  As I get older I increasingly resent it being labelled a "learning disorder" - it's not an intrinsic problem, the problems arise because the world is largely put together by non-dyslexic people.  That I write slowly and barely legibly is not the problem it was 30 years ago.  I've had a lot of very positive feedback over the years on the way I use very graphical methods in teaching that many people find very intuitive - and that helps them to build intuition.  It seems increasingly recognised that this is an aspect of dyslexia.  It's not a "disorder" - it's a different human phenotype that's sometimes beneficial, sometimes limiting.

So, for very similar reasons I am not happy with the "D" in "ASD".  The more extreme cases out there are intrinsically problematic, but I think for many people most problems arise because the world around them is built by people different to them, and the expectations on them do not fit their mind very well.  For a decade I've had a role advising students in a 1:1 capacity which has strongly reinforced my dislike of the use of "disorder". 

I hope that your diagnosis helps you understand your interaction with the world around you, and gives you more jumping off points for reading, and strategies for dealing with things, but please don't be defined by the "D" in the label.

Post edited at 16:46
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 Bob Kemp 22 May 2021
In reply to wintertree:

I think you’re absolutely right to object to dyslexia being considered a disorder. This paper agrees with you, in much more detail- 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5924397/ 

As you say, dyslexia is sometimes beneficial and sometimes limiting and seeing things like dyslexia, ASD and ADHD in terms of neurodiversity is a much better approach. Here’s a piece from Scientific American which explores the concept in some detail, and also emphasises your point about how the world makes life difficult for the neurodiverse amongst us.

https://blogs.scientificamerican.com/observations/clearing-up-some-misconce...

RentonCooke 22 May 2021
In reply to Removed Userafrequentposter:

I'd be very interested to hear your experience.  Not headed for a diagnosis myself, but have a very close female friend (ex g/f, for context) who has just been diagnosed.  Same age.  Was plain as day to me that she was at some point on the spectrum, but also very hard to detect in some ways - extremely high functioning, fascinating, interesting, successful, but pregnant at age 16, surgical career cut short, and while outwardly gregarious and wonderful, under the surface could be extremely cold and withdrawn.  The best way I could describe it is that in most people you see a spark, in her case you saw a raging fire or furnace, but one which was in the distance.

I've worked my way through a lot of literature on ASD since it became apparent so very intrigued by the onion that it is.  Just when I feel I have her figured out, a curve ball is thrown.

I'm unclear how her diagnosis is impacting her, especially as it was based on our connection that she sought it.  I don't know if it is helpful or not.  Surprised more than anything out the diagnosis came so late, but I suspect our understanding of ASD has changed so dramatically in recent years that this is the result.

Post edited at 22:48
 MeMeMe 22 May 2021
In reply to Removed Userafrequentposter:

> Hi YouYouYou.. I had a very similar experience with my relationship with my wife, which thankfully we are working through (following a lot of counselling and advice). If you want to PM me on this please feel free.

Thanks for the offer, that's very kind. There's plenty of other things complicating our relationship apart from my probable ASD though! 

RentonCooke 22 May 2021
In reply to wintertree:

To differ with you here, the experience of my friend is that it is very much a disorder.  The anguish, difficulties, and traumas that have resulted, through no malice or ill-will but which have seemed unavoidable do, by her own viewpoint, count as an affliction.

Her ASD appears to be the root cause of what makes her an amazing person, though it could be argued that may have been present anyway.  But it very much seems these same, most wonderful attributes, are most likely a zero-sum trade-off against her ASD. And those possibly aren't trade-offs she would reliably choose if she had the choice.  So I think "disorder" can be a fair description for people.

 Ridge 22 May 2021
In reply to MeMeMe:

Sorry to hear that, and wishing you all the best.

I suspect, like many people, I'm somewhere along the spectrum. I've always known something wasn't quite right, but I don't find it a major issue. Fortunately Mrs Ridge has just accepted that I'm, in her words: "just weird" 

 MeMeMe 22 May 2021
In reply to Bob Kemp:

> As you say, dyslexia is sometimes beneficial and sometimes limiting and seeing things like dyslexia, ASD and ADHD in terms of neurodiversity is a much better approach. Here’s a piece from Scientific American which explores the concept in some detail, and also emphasises your point about how the world makes life difficult for the neurodiverse amongst us.

Thanks for posting that Bob, I've not read it before and it was really interesting. 

In reply to wintertree:

> So, for very similar reasons I am not happy with the "D" in "ASD".

I agree. Whilst extreme autism can be quite debilitating, for most people on the spectrum (that's all of us), it's really more a matter of variation of personality  and various abilities. I don't like the 'disability' label.

That's why I'm also sad that 'MeMeMe' thinks of themselves as 'not normal'; they are normal.

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 MeMeMe 22 May 2021
In reply to Ridge:

> Sorry to hear that, and wishing you all the best.

> I suspect, like many people, I'm somewhere along the spectrum. I've always known something wasn't quite right, but I don't find it a major issue. Fortunately Mrs Ridge has just accepted that I'm, in her words: "just weird" 

I think there are probably a lot of adults who were never picked up as children because it was just not such a known issue when they were children. But now they are adults they've learned how to mask their neurodiversity to fit in. I certainly feel like you that something wasn't quite right but if you met me I'd mostly pass as 'normal'.

The article Bob posted has a section that said 

'There are struggles that come with being far from “normal” and struggles that come with being almost “normal”—not to mention, typical lives are hardly free of challenges!'

I think I struggle with being almost normal because the expectation on you is that of a "normal" person but that puts pressures on you that a "normal" person just wouldn't have. After a while it can all get a bit much, particularly if circumstances are challenging in other ways too.

Good to hear Mrs Ridge has accepted your weirdness, hold onto that one.

 Robert Durran 22 May 2021
In reply to wintertree:

> Sorry, rant alert; hopefully a positive rant.

> I am quite badly dyslexic (possibly these days it would be called dysgraphia in my case?) 

Considering your covid threads, I don't think you are terribly dysgraphic! 

 wintertree 22 May 2021
In reply to Robert Durran:

> Considering your covid threads, I don't think you are terribly dysgraphic! 

If I had to hand draw and write them, you would disagree!  Being so incapable with pen and paper is part of what pushed me towards computer based approaches early in life.  Look carefully and you’re likely to find lots of wrong words - especially same sound/different spelling - in my threads if you look for them as well as wrong word substitutions of a sort you’ll likely read over without noticing.   I hide behind a spell checker these days but it can only go so far...

 Bob Kemp 23 May 2021
In reply to RentonCooke:

In reply to RentonCooke:

Using the term ‘neurodiverse’ doesn’t have to mean glossing over the difficulties engendered by these conditions. Most of them are spectrum conditions, and people with the more extreme manifestations need appropriate help. But it doesn’t help to dump people in some separate category of the disordered, and using the label neurodiverse makes it easier to remember that ‘normal’ really covers great diversity. That matters when it comes to designing the physical and social world in ways that give neurodiverse people a chance to live their best possible lives. I know nothing about the problems your friend has faced but I wonder how many of them have been exacerbated by a world that ignores the needs of people like her. 
An example that’s interesting here is the way that digital technologies build certain cognitive assumptions into the world. So dyslexic people may have to face complex systems that use extensive text based content and interactions. This turns a difference into a disadvantage, and it’s easy to see how someone with dyslexia might feel afflicted. 
Anyway, it’s late now, and my little burst of ADHD hyperfocus is fizzling out. If anyone is interested here’s a good article exploring a lot of the problems and nuances around this question of neurodiversity vs disorder: 

https://www.thenewatlantis.com/publications/mental-disorder-or-neurodiversi...

 Michael Hood 23 May 2021
In reply to wintertree:

I'd noticed several spelling/word errors with your posts which didn't quite look like auto-correction so had wondered about dyslexia.

I've had a diagnosis of adult ADHD for about 3 years. Not sure it's correct but I've certainly got something neurological going on in that area (very high scoring except for executive functioning) and since the ADHD drug I take seems to help (certainly much more than previous anti anxiety drugs) I'm not really bothered whether the label is correct or not.

It certainly helps explain why I was ok as a software engineer (career 1) but how auditing (career 2) didn't work out once I was qualified and expected to work at a level where I was expected to manage/coordinate audits rather than just doing the actual technical auditing tasks.

 Alkis 23 May 2021
In reply to wintertree:

> I am quite badly dyslexic (possibly these days it would be called dysgraphia in my case?)  As I get older I increasingly resent it being labelled a "learning disorder" - it's not an intrinsic problem, the problems arise because the world is largely put together by non-dyslexic people.  That I write slowly and barely legibly is not the problem it was 30 years ago.

I was diagnosed with Dyslexia and ADHD in second grade, and what you are saying is hitting some right chords. I cannot write properly to save my life. My whole arm cramps up after a while and it's barely readable. Looks at a couple of pages of text, or sometimes even different lines on the same page, it looks like multiple different people (all with terrible handwriting) have been scribbling in my notepad. Where this becomes a problem is that I tend to avoid taking notes because of it, it never became a habit of mine, relying instead on my memory, which is pretty good... except when it's not...

Where there is certainly an element of dyslexia is that it took me *far* longer than is normal to get to grips with spelling in my native tongue and I still get it wrong now at times. That does not affect my English at all, I suspect that English uses a slightly different part of my brain. 

The ADHD has been far more of a problem throughout my life and I do wonder if things would have been different had I been born in an era when it was medicated.

 minimike 23 May 2021
In reply to Thread:

Thanks all. This is turning into a fascinating discussion and encouragement so I’m going to follow in Bob’s footsteps at this point regarding anonymity..

-afrequentposter


regarding the ‘D’ issue, I agree WT, it’s mostly not a disorder, but there are some aspects which clearly are. My inability to process nonverbal communication or to interact meaningfully with more than one person at a time are limitations most neuro typical people don’t have or understand. On the other hand, as someone pointed out up thread it’s something of a zero sum game apparently and those parts of my brain seem to have been co-opted for other things which I find I’m atypically able at.

neurodiversity sums it up, but I’m also aware the disorder aspect affect different people in different and more severe ways than me. I’m lucky, I wouldn’t change anything, but I’m just me.

-minimike

 Michael Hood 23 May 2021
In reply to minimike:

Well done on "coming out", I've always thought that the societal taboo on talking about (and/or admitting to) mental health and neurological issues and problems was a bad thing. Thankfully this "taboo" is gradually diminishing.

But my sense of humour on this makes me want to say "no, I'm Spartacus" 😁

Post edited at 07:40
In reply to captain paranoia:

> > So, for very similar reasons I am not happy with the "D" in "ASD".

> I agree. Whilst extreme autism can be quite debilitating, for most people on the spectrum (that's all of us), it's really more a matter of variation of personality  and various abilities. I don't like the 'disability' label.

> That's why I'm also sad that 'MeMeMe' thinks of themselves as 'not normal'; they are normal.

You're trivialising something that has a massive impact on someone's quality of life. If you have been diagnosed with Aspergers, or ASD as it is referred to now, it is considerably more than a "personality" issue. Frankly, I find it disgusting that you can even get away with writing that without people challenging you. Unfortunately, the definition of what it actually is more often than not hijacked by people who "think" they have it, "think" all the engineers in their office have it or whose kids are diagnosed with it and so want to construct some psychological firewall around reality (that is not intended to target anyone in this thread, it is just generally how things are). Someone who doesn't have it or doesn't know very well someone with it, can have no idea the amount of discrimination and isolation someone on the autistic spectrum will face through their life. The sad fact is that people will write the sort of rubbish you have just done about us all being normal, and it just being personality variation, then you'll go out in your day to day life and probably carry on treating people on the autistic spectrum like sht, because you don't know the person you're interacting with is on the autistic spectrum. So, you'll infer from their body language, eye contact, what they say (or lack of those things) etc. a lot of negative things. You'll do much of that subconsciously, by the way, because your brain works like that (assuming you're neurotypical). If you have Aspergers, or ASD, it doesn't. Having arrived received all this negative input, you can then feel free to ignore the person; you can have a laugh at their expense because they have a tendency to take things literally; make other cruel jokes about them, ideally within earshot; if you're a teenager that person will make a good punch bag; if you're an adult you can exclude them from employment, because, well, they just don't have a "nice" personality, don't make eye contact and aren't a team player. 

And to other posters, Aspergers, or ASD, is not like Dyslexia or ADHD. It is wrong to write about them as if they are comparable. What you experience with, say, dyslexia has little in common with the experiences of someone with ASD, although that's not to say it's not challenging for you.

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 minimike 23 May 2021
In reply to RentonCooke:

If you’d like to discuss offline (or anyone else for that matter) PM me.. I’m happy to share more details of my experience privately if it could potentially be helpful.

 minimike 23 May 2021
In reply to wurzelinzummerset:

I agree with quite a bit of this too, although I wouldn’t put it in such strong terms. I think by the age of 40, those of us who have ‘survived’ in society have built such strong masks that we are somewhat oblivious to all this, but the diagnostic process has revealed a lot of things in the past, from physical and mental bullying through rejection from societal groups at all levels. It doesn’t go away, you’re an unacceptable intrusion of black and white, blunt, truthfulness wherever you go and the closer you get to other people and their power domains the less acceptable that is. Glass ceiling? Tell me about it.. go it alone or go home, as they say. Hmmm

Is it us who are disordered though? Or the lying, self serving, greedy society we live in? Genuine question.. I don’t think it’s me! Neither does Greta..

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 wintertree 23 May 2021
In reply to wurzelinzummerset:

> And to other posters, Aspergers, or ASD, is not like Dyslexia or ADHD. It is wrong to write about them as if they are comparable

To be clear I did not in any way suggest that they are comparable.

But, both Asperger and dyslexia are not binary, are not purely negative, and in many cases (I was clear in my post that this is not universal), *some* of the difficulties arise from the way people are treated - which means they can be accommodated by awareness from others, with the implication that the problems arise at the societal level, making me strongly question the blanket use of “disorder” at the individual level.

With regards the rest of your post, I have had a long term role advising many people through their studies; I am wary of privacy issues here but it would be unusual if I’d not had quite a few students with formal diagnoses.  Then there will be those without a diagnosis who find some aspects of their studies difficult for aligned reasons, and where they find beneficial things I might also suggest to someone with a diagnosis.  Diagnosis becomes more likely the further someone is down the road, but that is no more binary than someone’s position along the road. Some formal ways or supporting a student will depend on a diagnosis and therein lies a lot of unfairness.

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 minimike 23 May 2021
In reply to Michael Hood:

Thanks, I chickened out yesterday and chose to test the water, so to speak. This place isn’t always famous for its supportive approach, but I felt the conversation needed to be opened. Hopefully it’s a positive thing. 

 MeMeMe 23 May 2021
In reply to minimike:

> I think by the age of 40, those of us who have ‘survived’ in society have built such strong masks that we are somewhat oblivious to all this, but the diagnostic process has revealed a lot of things in the past, from physical and mental bullying through rejection from societal groups at all levels.

I completely agree with this. I’ve not gone through the diagnostic process but when I talked to my mum about this and she told me that I’d always been different as a kid. Shit! I sort of already realised but I also thought that maybe everyone just feels like they are different and I was just the same as everyone else. I’m finding the whole idea quite difficult and emotional.

In reply to wintertree:

I’ve not come across ‘disorder’ being commonly longer used in either case for a long time so that is changing. Dyslexia I more commonly hear called a ‘specific learning difference’ which perhaps encompasses a little more recognition of the strengths that often come with it.

ASD was replaced by Autism Spectrum Condition as the accepted diagnostic term some time ago, but that’s only due to technical differences in the medical definitions of ‘disorder’ and ‘condition’ rather than any attempt to de-pathologise the language .

There is certainly a lot of unnecessarily pathologising language around things like this though.  Unfortunately when it comes to commissioning services and funding research people love nice clear-cut boxes for different ‘disorders’ and whatnot. Makes it nice and easy for them to say “we’ll pay for X but not Y”. This overlooks the fact that X and Y generally represent arbitrary points on a spectrum rather than any discrete or valid categories.

So thus we end up with labels that aren’t fit for purpose. Even the groups who write the diagnostic criteria admit that they lack any scientific validity and warn against holding them too tightly.

Post edited at 09:04
In reply to Stuart Williams:

Having done a couple quick searches it looks like the change in terminology for dyslexia isn’t as common I had thought. 

 Bob Kemp 23 May 2021
In reply to wurzelinzummerset:

ADHD, dyslexia and ASD are not comparable in many ways, but there are significant commonalities. They all appear to have a substantial genetic component. In that sense they are physical conditions as opposed to purely mental disorders. They are all prone to considerable negativity in the ways that they are labelled. And they are all conditions that can’t be ‘cured’ - they are an integral part of the individuals with those conditions.
Conceiving of these conditions as neurodiverse is a way of removing stigma and stopping purely negative approaches to their treatment based around conceptions of deficit and damage. I’d recommend the New Atlantis article I cited above for a good discussion of these issues. 
Otherwise, you may have very good personal reasons for the anger in your post but could you please respect the OP’s wishes and keep it nice?

 minimike 23 May 2021
In reply to Bob Kemp:

there certainly are differences and commonalities in all these conditions. Personally I think there’s more difference than not when it comes to ASD and the ‘dys-x-ias’... but is there ANY such thing as a purely mental disorder..?

 Bob Kemp 23 May 2021
In reply to minimike:

I don’t know. I was reluctant to use the word but I couldn’t think of a better one at the time! The distinction I wanted to make was between the wider range of mental conditions and those with a significant genetic component and identifiable physical differences in the brain. We haven’t mentioned them here but I understand that conditions like bi-polar disorder and schizophrenia would be part of this group. 
More generally, many mental conditions have a physical component in the way they manifest, and it’s becoming clearer that the whole area is hugely complex.
If you haven’t read it yet that New Atlantis article I keep plugging (no, I’m not connected!) is very good on many of the complexities.
 

 freeflyer 23 May 2021
In reply to wintertree:

I don't know about you, but I've found that helping other people has taught me a great deal, and I wouldn't change that for the world. Significantly:

My observations about other people are not helpful to them; therefore it is better to listen and support. That is not to say that someone in a chaotic state may not need guidance and structure though. It's tricky.

While supporting other people and looking at their problems together, I have unintentionally been looking at my own problems.

Some people I have regretfully had to end contact with, as our interaction caused problems for one or both of us. I'm glad I'm more able to recognise this situation.

As wurzelinzummerset says, there are some people who have a really bad time of it; their post accurately describes my (undiagnosed) teenage years. I have only just made this connection as a result of this thread, so thankyou!

 Alkis 23 May 2021
In reply to Bob Kemp:

> ADHD, dyslexia and ASD are not comparable in many ways, but there are significant commonalities. They all appear to have a substantial genetic component. In that sense they are physical conditions as opposed to purely mental disorders. They are all prone to considerable negativity in the ways that they are labelled. And they are all conditions that can’t be ‘cured’ - they are an integral part of the individuals with those conditions.

Agreed. While I'm not on the spectrum, my ADHD is a big part of who I am and how I function. I genuinely just wouldn't be me without it. I'm sure it's the same with people on the spectrum, so labelling anything that is neuroatypical a disorder is not helpful.

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 Jock 23 May 2021
In reply to Removed Userafrequentposter:

Lots of mentions of "the spectrum" around neurodiversity - I think this is a really useful article of framing it more usefully:

"Autism is a Spectrum" Doesn't Mean What You Think » NeuroClastic

(sorry - doesn't seem to be pasting as a link - you might have to Google it)

Post edited at 12:57
In reply to Bob Kemp:

> Otherwise, you may have very good personal reasons for the anger in your post but could you please respect the OP’s wishes and keep it nice?

I reread what I wrote earlier, and apart from a few typos, and maybe a poor choice of word at one point, I think it conveyed a message that was useful. I did reply to the OP earlier in the thread with different information, but deleted it as I know what is intended to be useful can be seen as "not nice".  However, reading subsequent posts I thought a line had been crossed where perception of being "not nice" was secondary to correcting certain misconceptions. Anyway, I do wish the OP all the best.

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In reply to wurzelinzummerset:

I have a bit of experience of neurodiversity. My point was that of saying we should not consider AS as a disorder, but as a normal range of the human condition. That experience means I can recognise the behaviours, and accommodate them, thus avoiding treating anyone like shit. My hope would be that 'normalising' this condition would lead to a universal understanding.

Post edited at 13:43
In reply to wintertree:

> But, both Asperger and dyslexia are not binary, are not purely negative, and in many cases (I was clear in my post that this is not universal), *some* of the difficulties arise from the way people are treated - which means they can be accommodated by awareness from others, with the implication that the problems arise at the societal level, making me strongly question the blanket use of “disorder” at the individual level.

It's not realistic to think that for Asperger's it can be addressed adequately at the societal level. Most people could get a grasp of what it's like to be Dyslexic and thus make some accommodation, most people would have a very hard time getting to grips with what it's like having Asperger's. I expect many think it's just another one of these disorders that get made up on a whim by psychologists -- in fact I know that's what many people think. 

As you know, it's complex, but the most difficult feature of it, from the several people I know or have known with a diagnosis of it, is the interaction with other people. That's not to be confused with shyness or social anxiety, but that if you have it the brain doesn't process things the way it should in interactions with others. So, that's a mix of things like eye contact, body language, reciprocity, that is done to a large degree subconsciously by most people. Some of it can be learnt, but it will never be entirely right, and people can pick up on that very quickly and infer negatively from it. That will exclude you from many things throughout your life -- don't underestimate that. It will make you a target, too, especially at school. Indeed, society is constructed in a manner that actively discriminates against those with it. It values good conversational skills, people who can work as a team, those who empathise with others and can show they do appropriately, people who can joke and make us laugh. If you look at many job adverts you'll see this. You'll never change most of that. That said, if you're helping students on the autistic spectrum that is to be commended, and the sort of thing that is needed.

 Fat Bumbly2 23 May 2021
In reply to wintertree:

That “d” really bothers me.  Glad I am not the only one offended by it. Thanks also to Wurzel for that previous post outlining the consequences... they should never be underestimated. 

Post edited at 17:12
 wintertree 23 May 2021
In reply to wurzelinzummerset:

> That said, if you're helping students on the autistic spectrum that is to be commended, and the sort of thing that is needed.

Covid got me to change my job significantly - gave me pause to think about what I want.  So that is now sadly in my past - it was one of several 1:1 roles on the teaching side that were very rewarding and always interesting.

A point of pedantry - it wasn’t just “helping students” but working to understand where they were disadvantage on the teaching side, and looking to see if the reasons they were having problems were actually required by or for the educational purposes of the module; often they were not and so there was no reason not to remove those reasons - perhaps to the benefit of more than just those with a diagnosis.  So in a little way, it’s looking to reduce the exclusion you rightly hilight; that exclusion is IMO a social disorder and whilst it disadvantages a minority the disorder does not lay with said minority.

In reply to freeflyer:

Its difficult when ones go-to setting on everything is “problem solve” - how I solve problems is often not appropriate for others and it takes me a lot of effort to STFU, listen and encourage/signpost rather than try and problem solve.

1
 Timmd 23 May 2021
In reply to Removed Userafrequentposter:

A friend has been diagnosed with Asperger's, and has seemed a lot happier since, because it explains to her why she's 'always zigged while the universe zags'. I guess a helpful perspective could be that all the different aspects of being an aspie won't all apply to you, and that any self knowledge has got to be a good thing, too.

Another friend has wondered if I'm on the spectrum, until I read about how left handers can self monitor to an unhelpful degree in social situations, be 'socially on tenterhooks' about putting a foot wrong, which at the time had a similar effect on me to that of my friend's diagnosis of Asperger's on her.

It might be a bit of a headf*ck at first, to get to grips with as a concept, but 'Nothing is good or bad, it is only thinking which makes it so' comes to mind, too, in that I guess you could almost be Hooray about it, as much as Erk or Hmmmn, and it would still be the same. More self knowledge has got to be good.

Post edited at 18:00
 minimike 23 May 2021
In reply to wintertree:

It gets a lot of problems solved though, eh!

;-D

 freeflyer 23 May 2021
In reply to wintertree:

>  it takes me a lot of effort to STFU

Same here

I've made a little progress in the realisation that everyone's perception is utterly different, and my attempts at conceptualising their problems verge on irrelevant in that context.

I teach people to ring church bells. I remember once I had a very intelligent chap who was hopeless at it, but had great perseverance and turned up faithfully when required. After one particularly awful practice effort, I was trying to think of something positive to say, and in desperation asked "how did that go?" "Oh, it was great", he said, "I really thought I saw more of that".

I'm not doing so much teaching at present. I miss it.

 Siward 25 May 2021
In reply to the thread :

There was an excellent interview on yesterday's Woman's Hour (radio 4) about a late diagnosis of autism. Worth a listen on catch up. 

In reply to Removed Userafrequentposter:

Fascinating thread. 

I (and my wife) have long considered if I am on the spectrum or whether I have OCD (another situation where disorder should be removed) although whilst not an expert I suspect the two to be closely aligned. I am by no means disadvantaged by it, have good social skills and have had, until now,  a decent career in technical roles from medical devices to complex software.

I just see the world differently to others, get very frustrated at things others seem able to brush off and have at at times a raging anger which I have had to learn to control. I have never thought to be diagnosed and am not sure how having the label would make me feel nor would I know how to access the services to ger diagnosed in the first place.

I consider myself mildly affected by many standards as I have seen others near me whose lives are shattered by it and in one case, a man with severe aspergers who should have received more support is now in prison.

Post edited at 06:04
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In reply to TheDrunkenBakers:

> Fascinating thread. 

> I (and my wife) have long considered if I am on the spectrum or whether I have OCD (another situation where disorder should be removed) although whilst not an expert I suspect the two to be closely aligned. I am by no means disadvantaged by it, have good social skills and have had, until now,  a decent career in technical roles from medical devices to complex software.

Look at the diagnostic criteria and you'll see you don't have it (ASD). You demonstrate one of the problems I mentioned earlier in this thread, most people don't understand what it is. They make casual jokes about people being "on the spectrum", maybe speculate that they might have it without knowing fully what it is. You mentioned someone with severe Asperger's, I would say that if someone gets a diagnosis then the impact on their life will have been severe, and will continue to be so. You mentioned OCD, and many people with ASD also have that to various degrees. True, there is a spectrum associated with the autism part of this, and indeed with many other measurable, or not so measurable, human attributes, but if you want a light blue paint and your wife returns from B&Q with cyan, you might find that will do nicely. If she returns with red, then it won't. 

1
 rsc 25 May 2021
In reply to wurzelinzummerset and everyone:

I’ve learned a lot from this thread- thanks to the OP and all. I’d like to offer a little bit counterbalance to wurzel’s point about the reaction of other people and the severity of the impact of this.

In 20-odd years teaching in inclusive secondary schools, I’ve worked with young people of pretty much all neurotypes. I loved teaching people “on the spectrum” because it was so rewarding. I might even say, flippantly, that people *not* on the spectrum had a relative learning disability! (Please don’t take this as minimising anyone’s difficulties.)

I’d also add that in my experience, in recent years, the terminology in schools/colleges has thankfully moved away from “disorder” to ideas  of diversity, recognising strengths as much as challenges.

 Forest Dump 25 May 2021
In reply to TheDrunkenBakers:

Taking 30 minutes to leave the house as you check and recheck everything is in order is very much a 'disorder' 

In reply to rsc:

> I’d also add that in my experience, in recent years, the terminology in schools/colleges has thankfully moved away from “disorder” to ideas  of diversity, recognising strengths as much as challenges.

I've seen that change in work, too. I remember being involved in interviews over ten years ago, and spotting one candidate who had obvious AS. Working in a research division, I had many colleagues some way along the spectrum, and knew the strengths, and how they could be useful. The HR games were the usual "let's recruit social extrovert NTs just like us", and they refused to make any allowance, because the candidate hadn't declared they were AS, and refused to consider the potential benefits.

Now, finally, the company have recognised those strengths, and have embraced diversity, neuro and otherwise. The strengths are recognised, and the weaknesses are assisted, or managed.

 wintertree 25 May 2021
In reply to minimike:

> It gets a lot of problems solved though, eh!

Mostly.  

One of the really difficult problems is around international students from some countries; the U.K. medical system and our environment here would recognise differences that would be viewed in very different - sometimes harshly negative - light when they returned home between years.  Continuity of medication when relocating between different medical systems being a related issue that crosses over to other areas such as depression and anxiety.
 

Post edited at 20:11
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 streapadair 25 May 2021
In reply to Removed Userafrequentposter:

To borrow from Stevie Smith - I've been much too far out all my life, and not waving but drowning.

 Si dH 25 May 2021
In reply to Jock:

> Lots of mentions of "the spectrum" around neurodiversity - I think this is a really useful article of framing it more usefully:

> "Autism is a Spectrum" Doesn't Mean What You Think » NeuroClastic

> (sorry - doesn't seem to be pasting as a link - you might have to Google it)

Thanks. I'm not autistic but am beginning to wonder about one of my close colleagues at work. It's been interesting reading this thread and I found that article really good.

Post edited at 22:27

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