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WOMEN with high functioning ASD - Let's take action!?


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#1 georgiapiano

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Posted 08 August 2015 - 09:29 PM

Hello there fellow aspie lovelies!

 

First and foremost I would like to invite anyone and everyone to contribute to this thread.  Men and women.  I am primarily interested in women because I feel there are so many more of us out there undiagnosed and going through the same struggles as I (or we) do. I’m sure this is the case for many men too, but what interests me is that women are more difficult to diagnose and there is evidence and research out there that proves this…

 

My intention for this thread is to make new friends and share experiences with people alike.  But ULTIMATELY, I want to find some answers, and I want to find ways of actually doing something about ASD in women, particularly high-functioning.

 

Here’s a bit about me – I’ve tried to keep it straight to the point and non-waffly.  I am sure that as we all get to know each other and discuss more on this thread we will share our experiences in more detail…

I am Georgia.  I am 34, female, have 2 young children, a professional job, a partner who I love dearly and is also the father to my children…

To others, on the outside, I appear completely normal and functioning, but also very confusing and unpredictable. 

I am undiagnosed by the health professions, but positively self-diagnosed in the last month.  I choose not to seek a diagnosis because I don’t want to risk my career, which I perform well in.

I have read and researched ASD for the last 6 months after discovering it for the first time and relating to it, and have done several online tests. 

I have been previously diagnosed with depression and personality disorder.  Help I’ve received has been counselling, psychiatrist and cognitive behaviour therapy.  NONE of which have had any impact at all, if anything it makes me worse.  I always have a meltdown after CBT. 

My life, from a child until now has been an existence of angst, frustration, confusion, anxiety, unexplained meltdowns, poor relationships with family and friends, OCD, health obsessions, phobia of illness and hospitals, being misunderstood, depression, addiction, self harm, anger, inability to function for no explained reason, over-functioning some days to the point of hyperactivity…so yeah, the ‘normal’ things related with ASD.  Nobody would really know this about me (apart from my partner who is amazingly supportive), because I don’t show it on the outside.

 

One of the books I’ve been reading, among several others, is:

 

Women from another planet?  By Jean Kearns Miller

 

Anyone read it?  Fab book.  I related with so much of it.  It’s basically written by a group of women who initially met on a forum/group (just like we potentially are) and who shared their experiences.  They ended up compiling their thoughts and experiences into a book, also consisting of poetry.  It’s a very uplifting and thought provoking book.  But as I’ve really engaged with every part of it, there has been a question in my mind…

 

 

My response to reading it:

You say all this about ASD/autism/aspergers in women – BUT, what is actually being done about it?  Yes, the book helps me in that I know others experience the same, but

What happens to people like me, who are leading a functional life (higher functioning ASD) and who have professional jobs, so cannot seek a diagnosis, yet need support? 

I struggle every day to function, but I do it.  Some days I just have a meltdown and can’t do it.  I swear that if it wasn’t for my children I wouldn’t be here today.  I feel like I need help but don’t know where or how to get it.  I know now that the NHS cannot help me. 

 

Another thing, what about raising awareness of other people like me (and us)?  How many people must there be out there suffering the same, wondering what the hell is wrong with them, when all the time they have higher functioning ASD but just don’t know it?

 

I am really keen to do something to raise awareness and to help other women like us. Does anyone know if there IS already any help out there, and what?  Or does anyone have any thoughts about how we can move forward from here?  Even something as simple as setting up a support or awareness website? 

 

I don’t know.  The possibilities are endless I guess.  I’d love to discuss any thoughts. 

 

Thank you for reading.  Love you all, whether you respond or not xxx



#2 Special_talent123

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Posted 09 August 2015 - 12:28 AM

Hi Georgia. I am diagnosed as having Mid Functioning Autism, which means i am in the middle of the spectrum. I was diagnosed at age 14 but i also have various other conditions, when i read my friend books the author 'Paul Isaacs' I completely relate to his experiences and the way life was/is for him we are so much alike. There was a lot of stuff that came up because of him i did not realise until i first met him and i glad we did.



#3 trekster

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Posted 09 August 2015 - 08:18 AM

To make this thread transgender friendly please include non binary ie non gendered individuals in the discussion.

Edited by trekster, 09 August 2015 - 10:58 AM.


#4 The Exodus

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Posted 09 August 2015 - 10:56 AM

To make this thread transcended friendly please include non binary ie non gendered individuals in the discussion.

Good call. 



#5 trekster

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Posted 09 August 2015 - 10:59 AM

Thanks exodus just edited my post so it makes more sense.

#6 The Exodus

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Posted 09 August 2015 - 11:15 AM

Not to spread any kind of dichotomous gender imbalances, as Treskter had mentioned already, is most definitely a first. Not that I feel that you really do this intentionally but to separate male from female in a divergent category is one of the issues that societal construct currently faces in the eyes of those giving the diagnoses. As female Asperger's is, for the most part, far less obvious and considerably more subtle than male Asperger's, it is harder to diagnose and should be drawn attention to most rapidly. However, that's not to really say that this divide is even particularly clear cut. I scored something like ten below the threshold for a diagnosis from my psychiatrist. He allowed me to be diagnosed anyway. It was taken to the Autism forum and I received my diagnosis shortly after. 

 

As I've mentioned to people before, Asperger's appears to be greatly an amalgamation of multiple disorders come together to form a kind of "clumped" disorder that ends up being mistaken as something of it's own merit. I don't believe that Autism really exists at all, that the Autistic spectrum could actually be extended to encompass every single person to ever exist if it were lenient enough, as all people appear to exhibit at least an iota of Autistic traits. It's why so many people are so good at hiding it, why so many people can simply blend with others. I don't think there's any specific difference at all. We just know how to click with NT's because, well, that's more or less what we are. We're just far more concentrated in these dare I say cherry picked traits that appear to constitute Autism. 

 

So to raise awareness is to recognise the subtleties whilst simultaneously noting the significant exhibition of traits that most everybody is prone to doing at least once or twice in their lives. In short, we need a definition of what Autism actually means, not these loose and rather unhinged presumptions that suggest that all Autists cannot feel emotion or recognise facial cues. There needs to be an accuracy, and when even the NHS seems to get the definition wrong then you know that it's not quite as simple as people make it out to be (then again, the NHS aren't renowned for being competent). 



#7 Special_talent123

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Posted 09 August 2015 - 02:31 PM

I am not transphobic i am actually friends with the trans community and have friends within the trans community.

 

But i believe that whether we are female/or male i dont think the symptoms are any different for sex. They say male has separate to female, but im afemale but so alike towards male but we are all different so i am not for one who believes that females are different to males.



#8 georgiapiano

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Posted 09 August 2015 - 07:03 PM

Of course (I've tried to 'quote' but my computer is playing up), I was thoughtless to not mention trans gender - so, yes, this thread welcomes anyone regardless of any gender. 

 

I don't want to get caught up in a discussion ABOUT gender however.  My intention with this thread, as said in my initial post, is to share experiences with those alike and who have experienced the same or similar as me (and no doubt all our experiences are diffierent and I respect that), and to discuss thoughts about what we can do to support those who experience the same. 

 

Maybe I didn't make myself clear in my initial post?  Apologies if I was misunderstood.  I haven't intended to upset anyone. 

 

Love to all xxx



#9 trekster

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Posted 09 August 2015 - 07:33 PM

Many socialised females find their experiences of autism are often unnoticed because they appear to cope with life. This is a mask because they script conversations in their heads which they attempt to play out in real life, when these conversations don't go to plan their autism becomes more apparent to people who then don't understand because they are hidding their autism so well

#10 Special_talent123

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Posted 09 August 2015 - 10:50 PM

That is one im unable to do is script conversations in my head my behaviour comes out as it as im quite literal and will say it how it is.

 

I got into trouble at school for correcting the teacher on her spelling because i told her it was not right.

 

I still have trouble expressing and communicating

 

I have trouble understanding emotions, and reading them. We have learned im using words that people say to me, but not understanding them.

 

I have special interests mainly on Dolphins.

 

I have difficulty starting a conversation and is often quiet person around people socially people even think im 16 when im older than that.



#11 Mihaela

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Posted 11 August 2015 - 11:59 AM

To all who have wondered whether I'm still alive, I have no internet access at present so my appearances here will be erratic.  I'm writing this in advance and need a friend's help to post on here.  

 

Georgia - I find your comments most interesting.  I 'suffer' from a late diagnosis of what I'd call a textbook case of 'female-type Asperger syndrome'.  (I have virtually all the recognised traits, some of them in extreme).  I say 'suffer' because, had I received an early diagnosis (preferably during childhood), life would have been so much easier.  Instead, I spent decades trying hard to feign neurotypicality - not always very successfully.  Faking it may come naturally over time, but it takes its toll, and I've had to create umpteen coping strategies in order to stay reasonably sane.  I'd say that the key difference between FTAS and the classic 'male type' is our ability to act a role.

 

Like you, I was diagnosed with depression and a possible personality disorder (schizotypal-avoidant).  I can now see just how they reached that conclusion, and how wrong they were!  This was some years before FTAS had been 'discovered', and as you say, there must be large numbers of us out there who have no idea why we are 'different', let alone diagnosed.  

 

My life has never been easy, and this is entirely due to how the NT world treats me, and how I react to it.  Psychiatry, let alone wider society, still has a long way to go, before it fully recognises FTAS.  I'm not happy about the term 'female-type' nor about the Asperger's connection, for it doesn't properly describe the condition, although it clearly lies on the autistic spectrum.  Maybe we should call it 'high-empathy autism'.  (I also dislike the high-functioning label, for in many ways we don't function 'highly'; we function differently and may have many difficulties, especially seeing that getting support isn't easy - compared with the automatic support received by those at the 'low-functioning' end of the spectrum.

 

If we don't have families to support us, then our lives can break apart, as mine has been doing ever since I lost my parents.  I agree with you that a lot more should be done.  We need a dedicated support network and campaigning arm that specialises in our type of autism.  Its very subtlety and the way we respond to it, makes us 'blend in' too easily - that's until we get noticed, in a crisis, for example, by which time it's often too late.  This doesn't mean that we don't suffer unnoticed even while we're 'blending in'.

 

By the way, this describes me perfectly:

 

"My life, from a child until now has been an existence of angst, frustration, confusion, anxiety, unexplained meltdowns, poor relationships with family and friends, OCD, health obsessions, phobia of illness and hospitals, being misunderstood, depression, addiction, self harm, anger, inability to function for no explained reason, over-functioning some days to the point of hyperactivity."

 

As for gender identity (confusion, fluidity and dysphoria), this is significantly more common in people on the autistic spectrum, and so is physical androgyny.  I suspect that this is due to our autism affecting gender-determining genes which 'wire our brains' differently twice over.  We're also several times more likely to be asexual than neurotypical people (only around 1%).  

 

Exodus.  You make some excellent comments, but I think this gets to the crux of the matter:

 

"...we need a definition of what Autism actually means, not these loose and rather unhinged presumptions that suggest that all Autists cannot feel emotion or recognise facial cues".

 

So very true.  Mainstream psychiatry is still way behind when it comes to officially recognising such things as FTAS, PDA, links between giftedness and autism, etc.  We have a few pioneers to thank for recognising that things aren't as clear-cut as so many of 'experts' claim.  We too have an important role in educating the 'experts', the public and one another.

 

"Does anyone know if there IS already any help out there?" 

 

As far as I know there's nothing apart from generalised autism/Asperger's groups - which isn't good enough, for even within those groups there's often a misunderstanding of our type of autism, but at least they're more receptive.   I'd be very interested in being involved in setting up a support/awareness website...  that's as long as someone else handles the technical side.  :)
 


Edited by Mihaela, 11 August 2015 - 12:01 PM.


#12 Mr Salvador

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Posted 12 August 2015 - 07:53 AM

some good points here and some obvious misunderstandings, ive had to read a few times to resolve

 

the point trekster made about gender indifference is totally valid, and gender equality should be respected, and that gender indifference should be used in generalised posts about Asperger and autistic traits, however in this instance I think Georgia is talking from a personal perspective and had noticed that because she is a female and had noticed higher level of difficulty with her own self diagnosis. I also suspect my gf could be catagorised as FTAS, but she says she doesn't care because she has friends and coping strategies and doesn't notice as much as I do, she just identifies with OCD and anxiety, but I see it differently.

 

The Exodus has made an excellent point about needing more clearly defined definition of what autism 'actually' means! otherwise you could catagorise many people on the spectrum but certainly not all, I find most true-type NT's to have a rather selfish view of life and concentrate far too little on certain things we get accused of obsessing about, and I have met all too many people who more closely fit personality types such as physcotic or something devoid of human feeling!

 

I have also been misdiagnosed with similar but different issues such as anxiety, depression and PTSD, but for me I 'know' that it is more, and have also felt an unexplained angst and feeling of being wired differently which as you say Georgia, I too am now doing this for my child. I have a daughter aged 3 who does and says many things that lead me to think and say 'that's how I was at that age'.

 

I understand your concerns about your job, not wanting to jeperdise that if you are coping, but what is now controlling my thoughts is, how selfish would I be if my daughter makes it to my age (35) having had troubles all her life that were either undiagnosed or misdiagnosed leading to decades of suffering because she wasn't picked up because they assumed that I was 'ok'. as mihaela says going undiagnosed for so long takes it toll, having to pretend, or try to fit in is doable but tiring

 

 so now what I do I do for her. one could say that worrying about her future like this is anxiety or over-empathy, and say its because of aspergers, but I think that's the right thing to do as a human being and with love in my heart. no matter what the cost to me that's the price I pay for my daughters life now, if she can know about herself early enough she will learn to be able to cope being herself from a good age

 

A choice I know for a fact that many NT's would not and do not make in their daily lives! so no I do not believe that 'everybody' could be on the spectrum somewhere. I actually believe that if there was a worldwide test, more people would exibit the symptoms of psychopaths than autists

 

otherwise logically speaking there would not be war, and benefits wouldn't be getting attacked for the government deficit when Gordon brown got away with spending 15bn on challenger tanks that were never really even used in Iraq?! 'physco!'

 

if they bombard us with guilt trips about the suffering in Africa etc and that 50p can buy this suffering child some medicine, then why don't they just pawn off the stupid unused tanks and send them what they need? 'selfish!' 'heartless'

 

not sure if that's made the point about that,

 

theres some great points on this post so far but that is the one is disagree with

 

Other than the fact that this is georgias post about her own journey, gender shouldn't really come into it at all. we are all discussing our own opinions about ourselves as 'people on the spectrum' and as 'autists' gender definement should have no bearing in our discussions about how our conditions affect us

 

regarding autistic spectrum definement, I think the problem is that they don't really know and have put us in an 'other' box

 

many of us have similar traits, but then some can be so different, and in varying intensities!

 

It is my opinion, as some of you know, that what people term NT actually coins many undiagnosed asd's and a great many people who exibit the psychotic behaviours of either 'not caring' or deliberately 'inflicting harm for enjoyment'. It would therefore be that NT should really be termed neuro-incorrect, and therefore by default 'we', and the otherwise undiagnosed would then be neuro-correct, having logical based thinking which involves caring for others and equality on all levels

 

my mother cursed me verbally aged 5 for being a 'markist' for having these views, but I have always known my brain works differently than most (except on here lol), but just because the neuro-incorrect are in the majority doesn't make us 'wrong' or anything to be ashamed about

 

in regards to work, when I have my diagnosis I am going to my highly opinionated and intelligent ways to enforce equality upon my employer if they are not ready and willing to accept my condition. I am highly intelligent, especially with streamlining processes at work, problem solving when conventional methods have failed and fault diagnosis and repair. I have a lot to offer an employer, and in fact if they knew anything about us they would see it as a benefit! (as long as they don't expect me to have a lot to say that's not work related at break time and/or go to work night out or Christmas party)

 

I intend to do my research with the law and push for acceptace, even maybe appreaciation in the workplace

 

good luck with everything Georgia, and all of us in fact, but Georgia if the way your brain works helps you to be excellent at your job then why should it matter, if you have a friendly un-psychotic manager then you might be ok. I don't want to hide anymore, pretending is taking its toll on my wellbeing. im happy being me, when im relaxed im quirky and random and make silly noises, so what?! this is the same time I do my best work so I cant do it anymore, also having had some head injuries recently, I just cant fake it anymore. I need the world to let me be me or im going to explode!!!

 

diagnosis day T minus 6 days 23 hours 24 minutes! ....nervous and excited to the max!



#13 georgiapiano

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Posted 12 August 2015 - 08:21 PM

Many socialised females find their experiences of autism are often unnoticed because they appear to cope with life. This is a mask because they script conversations in their heads which they attempt to play out in real life, when these conversations don't go to plan their autism becomes more apparent to people who then don't understand because they are hidding their autism so well

 

This is so true.  Thank you for this comment.  It backs up what I am trying to do. 

Can I please emphasise again, I am not trying to discuss gender differences through this thread.  I am merely trying to meet like-minded individuals who can help me build up some sort of support network. 

 

XXX



#14 georgiapiano

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Posted 12 August 2015 - 08:40 PM

Mihaela and Mr Salvador, these are exactly the type of responses I'm looking for in this thread.  Thank you so much for giving your time to respond.  I'm just looking in quickly now to read up on any replies I've had.  I'm really pleased to see yours.  Being me, I now need about 100 hours or so to now proess and think about what you've said before I reply.  It's a lot to take in - very positively!  I don't want to reply now because I'm tired and it's bedtime.  Half assed posts aren't needed on this thread.  But I will respond, I promise, as this is very important to me and it wont escape my mind.  Thank you lots xxx



#15 Mihaela

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Posted 14 August 2015 - 09:39 AM

Thanks, Georgia. 

 

I was catching up on your earlier posts, and I identify with so much that you said about how autism affected you.  My own personal obsession with death is not so much my own mortality (although that's part of it), but death in general, and the mystery of existence.  I can't cope with death well at all; it scares me.  I know this is due to my AS - and it's just one of umpteen extreme sensitivities with which I'm forced to share my life - sensory, emotional and aesthetic.  Potential illnesses can cause anxiety too - if I allow myself to think about such things.  Luckily I can suppress such thoughts and I try to avoid reading about medical matters in general.  Like you, I used to have massive mood swings - and only at home, but now that I only live with my cats, they've disappeared. 

 

(By the way, I have a love-hate relationship with pianos -my favourite musical instruments.  I love the sound, whether accompanied or not - from Chopin to Svetla Ilieva - but my mild dyspraxia is enough to prevent me ever improving my playing.  That's one of the negatives of being on the spectrum, especially seeing that music plays a big role in my life. Pianocat can probably play better than me, but she's a very modest feline and quite shy about performing when I'm around!). x



#16 georgiapiano

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Posted 20 August 2015 - 08:45 PM

Thanks, Georgia. 

 

I was catching up on your earlier posts, and I identify with so much that you said about how autism affected you.  My own personal obsession with death is not so much my own mortality (although that's part of it), but death in general, and the mystery of existence.  I can't cope with death well at all; it scares me.  I know this is due to my AS - and it's just one of umpteen extreme sensitivities with which I'm forced to share my life - sensory, emotional and aesthetic.  Potential illnesses can cause anxiety too - if I allow myself to think about such things.  Luckily I can suppress such thoughts and I try to avoid reading about medical matters in general.  Like you, I used to have massive mood swings - and only at home, but now that I only live with my cats, they've disappeared. 

 

(By the way, I have a love-hate relationship with pianos -my favourite musical instruments.  I love the sound, whether accompanied or not - from Chopin to Svetla Ilieva - but my mild dyspraxia is enough to prevent me ever improving my playing.  That's one of the negatives of being on the spectrum, especially seeing that music plays a big role in my life. Pianocat can probably play better than me, but she's a very modest feline and quite shy about performing when I'm around!). x

Thank you for your comments Mihaela.  Sounds like you're dealing with it really well.  As for the piano thing - it doesn't matter if you can't play well.  Do what you love - enjoy it for you, and for no-one else.  xxx



#17 Mr Salvador

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Posted 27 August 2015 - 07:45 PM

my mother used to play classical music everyday on the piano. she tried to get me to learn but I didn't take to it. however I used to like listening to her play. she used to really blast ou the chopin, Mozart and guilbert and Sullivan stuff



#18 georgiapiano

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Posted 31 August 2015 - 08:20 PM

I'm blessed really.  There is a strong musical gene in my family which I am fortunate enough to have inherited.  I write my own music. It's a great sense of release from a stressful world.  I wish I had more time to do it. 

 

And Chopin is my favourite classical composer.  The raindrop song (prelude in Dflat) is my favourite.  I remember performing it at secondary school in our school theatre.  It was one of my most moving experiences I've had.  It's still my favourite piece today.



#19 Mihaela

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Posted 01 September 2015 - 08:12 AM

I'm blessed really.  There is a strong musical gene in my family which I am fortunate enough to have inherited. 

 

I think I inherited this gene too - from my mother.  I was brought up listening to her playing the piano, and really miss hearing her now.  (My dad liked listening to jazz).  I had many piano lessons as a child.

 

I write my own music. It's a great sense of release from a stressful world.  I wish I had more time to do it. 

 

I could possibly write my own music if I put my mind to it, for I've always made up my own music in my head - and played it.  This is something my mum couldn't do.  My big problem is playing music well - due to my dyspraxia - as well as reading it fast enough to play.  I understand all the symbols, etc. but it's just far to complicated for me.  My mind doesn't work quickly enough.

 

And Chopin is my favourite classical composer.  The raindrop song (prelude in Dflat) is my favourite. 

 

Yes, yes, YES!!!!!  ...Although I've never heard it described as a 'song'. :)  We must both have a melancholy streak; I certainly do.

 

It was one of my most moving experiences I've had.  It's still my favourite piece today.

 

I can well imagine it.  I'd say that the only music, art and poetry that really matters is that which evokes deep feelings within us.  The Raindrop Prelude can move me to tears very easily.



#20 georgiapiano

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Posted 07 September 2015 - 07:46 PM

Lol Mihaela, I've no idea why I called it a 'song' - it's not a song at all is it.  Just habit I didn't even realise I'd written it (the word 'song' not prelude in Dflat)!

 

Wow, it sounds like we share the same mindset.  I love melancholy stuff.  I do, like yourself crave to listen to music or indulge in anything that moves me. 

 

What's your favourite music?  I have a really wide interest - from metal/thrash metal, classic rock, soul, dance.... I tend to take preference in particular artists and bands rather than a set genre. 

 

I haven't forgetten lovely, to reply to your personal message. I've been so busy and I intend absolutely to reply.  In the meantime, if there are any other experiences or things you want to share with me about how our higher functioning brains work, please stick them in a pm. 

 

xxx



#21 georgiapiano

georgiapiano

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Posted 07 September 2015 - 07:49 PM

Mihaela, what I meant about pm me (I don't think I made myself clear reading back my message), if there are things in your past, as you were growing up - any significant things you want to share with me that relate to HF ASD, a pm would be amazing.  I've got loads of stuff to share.  Like I said, I could write a book - and I intend to.  And it would be lovely for you to be a part of it if you would like to xxx



#22 Mihaela

Mihaela

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Posted 08 September 2015 - 06:42 AM

Yes, Georgia, there really is loads, and I keep discovering more...  I'll PM you later.

 

Like you, my muzickal interests are very wide and not easy to describe in a few words, and also like you, they tend to be particular performers within varied genres.  They extend way beyond Chopin's songs...  Most of the songs I like aren't sung in English - except those that evoke memories from my past.  (Strangely I don't know any that evoke memories from my future... yet).  Recently I've been making a list (I'm a listoholic) of my favourite music, and its already getting pretty unwieldy. 



#23 IBURNTMYTOASY

IBURNTMYTOASY

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Posted 03 December 2015 - 10:48 AM

https://www.kickstar...894399/1-in-100

Please donate and help me fund my comic about a young girl with high functioning autism living with her sister and dealing with working life. It's going to be aimed at 16 to 25 year olds. 



#24 gelofogo

gelofogo

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Posted 14 December 2015 - 02:07 PM

I'm a working professional woman with a family, and I can relate well to what Georgia and Mihaela are saying. Work has always been happy, for me, until the trend for doing everything in groups became popular. 'Downtime' has become a plea from quite a few people in my office, as it's impossible to devote deep thought in a specialty when someone's going off half-cocked, mainly by participating without having done their due diligence. It's easy to look 'engaged' just by taking up time talking. They don't value what they can't understand, and when understanding is limited to "Oh, I need to say something here to prove I can participate," the level of conversation drops quite a bit. And for politeness's sake, I say nothing; nothing causes offense quicker than when a poseur has to respond to a good point.

 

I can and do manage to work in small groups. I do enjoy quiet zones afterwards. I don't like going home from work exhausted from all the contact.



#25 Aeolienne

Aeolienne

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Posted 15 December 2015 - 10:53 PM

I have had neither a successful career nor a family.






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