Newly diagnosed with mild ASD at 43

Hello again - thanks for your thoughtful and though-provoking post.

I really like your 'goldfish' metaphor - I often feel that the world outside my little sanctuary is something that I have adapted to 'survive' in, but that it definitely isn't my 'natural habitat'!

And no, I don't mind your metaphors at all - the bizarre, non-literal way that people use language fascinated me from a very young age.  Collecting' unusual words, euphemisms and figure of speech has become one of my obsessive special interests.  When I first moved to Yorkshire, it was a bit of a culture shock though - I still laugh when I hear local people say that their bus "blobbed" (didn't show up).

Disclosure is certainly a very tricky subject.  I've generally been very cautious about it.  So far I've told only the people treating me, and people that I am close enough to that they were already aware of my past burn-outs, anxiety and depression.

I find it is very hard to judge beforehand how people will react to disclosure.  And the range of reactions is incredibly diverse.  I haven't had anything too overtly negative - as in, the person suddenly having a lesser opinion of me - so far as I can tell.  But I have experienced disbelief that my diagnosis is correct - which I try my best to take as a compliment on my acting ability!

Even healthcare professionals have very little awareness of autism.  I've realised that since changing to a new counsellor who has worked before with people on the spectrum.  I can see now that previous attempts at counselling were doomed to fail from the start, because typical cognitive based therapies were not designed with the differences in thought patterns which people with developmental disorders can have.  For the vast majority of people, they're making reasonable assumptions, but for autistic people, it can just lead to further frustration at world's apparent inability to understand us.

The best way to tackle disclosure, I think, is to only express your needs as tactfully as possible whenever there's a specific obstacle to overcome.  I'm much more honest now with people when I feel I'm missing the context of what is being said - but I will excuse myself as having a bad memory (true) or being tired (usually also true!).  Economical with the truth, as the saying goes, but without lying to anyone.  If people put two and two together, I wouldn't deny my diagnosis if asked directly - but I think the people that can spot us in the wild are usually the more sympathetic ones.

Disclosure to employers is probably the part of it that gives me the most anxiety.  I haven't been employed since getting my diagnosis, but I do want to be.  I want it to be something that I know I can sustain long-term, though - I've lost previous jobs due to what, I know in retrospect, were autistic burn-outs.

On the other hand, some of my close family have admitted to me some of the similar traits that they experience, now that I am more able to describe mine.  I think I was lucky.  I get the sense that my oddness didn't seem so outlandish to them when I was a child - so even though autism was not 'on the radar' for any of us, they understood my need to recharge my batteries after too much exposure to people.  Family also really encouraged me to direct my obsessiveness into being creative and educating myself - an excellent way for me to wind down from frustrations.

Trogluddite said:

(me too - I can procrastinate at Olympic medal level!)

Congratulations! :-)

I am just now starting to discover the reasons behind procrastinating. I'm reading an excellent book in Dutch, about more peace and less stress with Autism, it's great. It comes close to being my users' manual. And it also points out that when tasks or stuff is too jumbled in your head it just becomes insurmountable. I mean even things like getting ready to leave the house. It is so true I get nervous and stressed for stupid stuff.

It is a bit embarassing to have to give in and start making detailed plans and lists - but it is magic, the other day it really halved my stress :-) So that leaves me feeling rather hopeful (eventhough it is acutely embarassing having lists lying around everywhere with the most stupid and personal kinds of stuff.

Trogluddite said:

Now that I've completed the assessment, it does somehow feel like a part of "growing up" never happened for me.

I wonder what part that is. Is it never learning to veneer over our insecurities and imperfections and never learning to play a role? Do most people learn to play their own role in life? And do we always start from scratch with an open mind? (As mentioned in the discussion on this forum which I found enlightening about playing roles at work :-) ).

Trogluddite said:

It's hard sometimes not to dwell on the things that the folks around us seem to achieve so much more easily, even now we know that there was always a good reason for the difference.

I've always felt it was my own fault. And plenty of people with autism are successful and do get things done. So I don't really feel I can blame all on ASD. But maybe I need to stop being quite so angry about not being able to get things done.

Trogluddite said:

You may be surprised how much of your tiredness etc. are cause by ASD.  I've had two total burn-outs in the past that each led to me having give up work.  Being autistic in a world where most people aren't really is very tiring - we're having to do stuff the long way around all the time, whereas most other people have instincts that give them a shortcut through so many social situations.  It's a bit like being in a foreign country where you are the only bi-lingual person - so the effort of 'translation' always falls on your shoulders.

Exactly!!!! Yes, I like your example of being the only translator around. I am more aware now, that in social situations where I feel totally awful (and I often only realise it when I am on my own again) where you feel bad because someone gave you a strange look and you try and figure out what it was about and then it hits you like a bombshell. It is good, to finally have a diagnosis. Because it kind of lifts the blame of just me being all wrong to me belonging to a group of people who might also feel like this.

Trogluddite said:

To reach our 40's without a diagnosis, we will probably have suppressed many of our autistic traits, and that can become a source of stress and anxiety so pervasive that we don't even realise it's happening (not knowing we're autistic forces us to treat this extra burden as "normal").

Yes yes yes :-) indeed. Actually we need to give ourselves some kudos, being so strong and keeping going most of the time. Whist some others are used to whistling through life walking a beautiful garden path with the occasional weeds they have no clue that we are clambering through a snake-ridden, swampy jungle on bare feet.

Trogluddite said:

In turn, that can manifest as physical problems, especially as we get older.  I realised for the first time during evaluation that my muscles are very often much more tensed than they need to be - but years of 'practice' had trained me to not notice myself doing it, nor to notice the discomfort that it caused for hours at a time.

yes, the muscle thing is very interesing. I haven't read much about it, but I think there are links also to dyspraxia and adhd which I was diagnosed with a few years before. 

Because I also tense my muscles when I have to concentrate. Also I'm interested in a heightened startle-reflex: like when I hear a phone or doorbell - my muscles spasm.

Is that because all social contact causes the fight or flee reflex - we tend to react too physically/defensively to social contact? (I read that about this reaction in a book recently). So we get to much cortisol or stress hormones chronically. Which is not so good for our health.

I was fascinated to read that IBS, ME, Chronic Fatigue Syndrome and fibromyalgia occur more often in Aspergers? (Was it in Aspergirls I read this?) I think this sounds kind of logical. If we are far more sensitive this would not just be the senses, but possibly, for example, also a more sensitive immune system?

For instance scientists recently discovered that people with fibromyalgia have more nerve paths in their blood vessels. Which would give credit to the idea that it is not just psychological.

Trogluddite said:

Having said all that, sometimes the reverse can be true.  It is common for autistic people to have a different kind of awareness of their own body - which can sometimes mask physical symptoms that others might routinely report to their doctor.  There's no harm in getting a check-up just for peace of minf, especially if you've tested positively for Lyme disease already.

:( I have a feeling that all my physical symptoms are being put down to being "psychological" which I find intensely frustrating. To me it is obvious that the psychological and physical and neurological very much influence each other. I see the immune system as another sense (like smelling, and seeing and touching).

Over here, doctors do not believe in Chronic Lyme disease. So they will only treat you if you have a swollen knee or meningitis or other very clear acute symptoms, they are not interested in long term effects.  I find it a bit worrying because there seem to be links to serious systemic diseases (the lyme bacterium is a cousin of the syphilis bacterium - crafty naughty and very intelligent). Sigh.

Trogluddite said:

The whole "geek" thing is is just one of many, many stereotypes and misconceptions about Asperger's and autism.  The spectrum is way, way more diverse than most people realise.  Even if you are a computer programming nerd like me, people will just find something else to get wrong (why do they they always assume I must also like super-hero movies and online gaming? - yuk!).

:-) so you have told friends, colleagues and others about your diagnosis? I feel rather apprehensive. Part of me would like to know if I am blatantly aspie in their eyes anyway. But I am still confused because I see myself as warm, outgoing and sociable (even if it gives me lots stress and makes me tired). 

Very interested in the diversity. I also think that the trouble we experience with ASD depends on the situation we are in. I mean a goldfish can survive in an acquarium, even though it would rather be in a pond. But put it in a hot bath with bubble bath and the goldfish is in trouble. (by the way - I drive an aspie friend of mine crazy with my metaphors. Does it bother you ;-)?

Hi Procrastinator (me too - I can procrastinate at Olympic medal level!)

The comment about feeling 20 years behind schedule really twanged something for me.  I was diagnosed a few weeks ago at 45 (about a year after it was first seriously suggested).  Throughout adult life I would joke that I was "30 going on 13", "40 going on 14"... Now that I've completed the assessment, it does somehow feel like a part of "growing up" never happened for me.

Those moments of jigsaw pieces falling into place since diagnosis have been wonderful, but at the same time it can throw into stark contrast any differences between us and our peers that we're anxious about.  It's hard sometimes not to dwell on the things that the folks around us seem to achieve so much more easily, even now we know that there was always a good reason for the difference.

You may be surprised how much of your tiredness etc. are cause by ASD.  I've had two total burn-outs in the past that each led to me having give up work.  Being autistic in a world where most people aren't really is very tiring - we're having to do stuff the long way around all the time, whereas most other people have instincts that give them a shortcut through so many social situations.  It's a bit like being in a foreign country where you are the only bi-lingual person - so the effort of 'translation' always falls on your shoulders.

To reach our 40's without a diagnosis, we will probably have suppressed many of our autistic traits, and that can become a source of stress and anxiety so pervasive that we don't even realise it's happening (not knowing we're autistic forces us to treat this extra burden as "normal").  In turn, that can manifest as physical problems, especially as we get older.  I realised for the first time during evaluation that my muscles are very often much more tensed than they need to be - but years of 'practice' had trained me to not notice myself doing it, nor to notice the discomfort that it caused for hours at a time.

Having said all that, sometimes the reverse can be true.  It is common for autistic people to have a different kind of awareness of their own body - which can sometimes mask physical symptoms that others might routinely report to their doctor.  There's no harm in getting a check-up just for peace of minf, especially if you've tested positively for Lyme disease already.

The whole "geek" thing is is just one of many, many stereotypes and misconceptions about Asperger's and autism.  The spectrum is way, way more diverse than most people realise.  Even if you are a computer programming nerd like me, people will just find something else to get wrong (why do they they always assume I must also like super-hero movies and online gaming? - yuk!).

Hi Random

Thank you for your reply. I'm sorry if my comment about me not identifying with the more scientific aspergers kind of person was hurtful in any way. I am not British and  "Geek" has stronger negative connotations as does "Nerd" than what I intended. Although I have friends who happily use it with regard to themselves. Probably the rule is one shouldn't use it except with regard to oneself?

I meant that not being scientifically-brained makes me feel shy to say I have aspergers because I don't feel smart in that way and am not good at concentrating on details. But anyway over here aspergers no longer is a diagnosis anyway so the ASD umbrella kind of covers everything without having to justify.

Rationally it seems a good call not to reproduce - as indeed there is the hereditary stuff, and I also suffered at school (but I was lucky to have a warm, loving home). Thing is the more I get in tune with myself, there is something very instinctive and maternal going on - and I just wish I had tuned into myself twenty years ago. But then I always feel I am twenty years behind schedule. And for a female timing is of the essence in these things :(

Your diagnosis is also recent. For me too, what I thought was very rational and ideological reasoning probably has more to do with ASD than with real choice. My inability to take initiative, make decisions and plan ahead has somehow neutered what dreams I had for my life. So I can identify with what you say about first thinking: "Oh, it's just mild ASD." And then thinking: "Woops, this kind of is the reason my life looks like this". If that makes sense.

I am childless at 49, but not particularly sad about it. I would like to be in a relationship far more than I would like to be a parent. My childhood and early adulthood was very tough, and I came to the decision that I didn't want children if there was any chance they may have to suffer like I have. I would be absolutely devastated to know or see a child of mine to endure even a small part of what I went through. I didn't know I had aspergers and its heredetory links, so its causing me some problems to look back on that decision. 

Having said that, if I had been able to establish a relationship, I may well have had kids if my partner wanted them, and would have devoted myself to them. I would like to think that if I was a father myself, I would not have treated my children like my father did. That again is causing some difficulty to deal within myself as it is likely my father has aspergers.

I was diagnosed in August last year, initially I felt I was only mildly affected by asc, but have since been shocked at what a wide ranging effect it has had on my life

I have been labelled as a computer geek occaisionally, I don't like all the negative connotations that go with it, which as far as I can make out are typical asperger traits. I am reasonably sociable, but it causes me a lot of anxiety. It always pains me to mention my career as a web developer, but it pays well, and one of the professions where asc is tollerated more than others.