Are there any women here?

I'll be honest procrastinator there is a part of me that is totally delighted that I am not like 'them'. Yet it all mattered so much to me in my youth - very painful time I think for us, especially without understanding of what we are - very lonely.  We don't have the confidence.  As much as I quite liked the physical aspect of being young.  I wouldn't want to be young again!  I am more at peace with myself at 43 than I have ever been in my life.  I am 'ok'.  I am different but I am OK.  

Yes me too!  I am a nice brand of "crazy, weird, odd".  Well mostly unless someone starts messing about with my children ie not giving them the support that they need and then I'm afraid it can be really hard for me to not be blunt to the point of rude.  That is my biggest struggle.  All six of my children have SEN and disability and it's a constant fight for services.  Highly emotionally charged the whole thing which aggravates my 'bluntness' and 'honesty'.

Lucky for me I've got fairly high IQ so I usually get what I need in the end for them.

I'm not officially diagnosed but awaiting official diagnosis.  To be honest though, the more I come on here the less i feel that it's important that the doctor who will probably be a 'man' needs to rubber stamp me to authenticate it.  I have got this.  I know it, I feel it.  Nothing else has ever made such sense.  I won't let any doctor take that away from me.

The things is with me is that I don't immediately 'look' different.  It's only after spending some time around me that you can tell there's something 'not quite right' lol

I was very attractive when I was young and so 'men' 'boy's wanted me (I'm sorry if that sounds vain, I'm not I'm just over honest and I don't think about how that might appear to others).  I see that sentence looks like vanity or ego but it's not. It's the simple truth.  This is what I do say the truth without considering how people might interpret!  God it's a headwreck all that second guessing what people might think isn't it?  That is the truth, make of it what you will neurotypicals lol

I think that made me feel more regular but I found it difficult to be myself around them.  My husband is a bit odd and I can totally be myself with him - he doesn't bat an eyelid.  He likes my 'oddness' lol  We laugh at odd things and laugh at neurotypical behaviour and the sheer lack of logic to any of it.

I've also been diagnosed with ADHD.  I didn't plan to have six children.  I also didn't 'not plan' either lol  I have impulsive ADHD so maybe that's where it all comes from :O 

I am not a Mary Poppins kind of mother, or cake sale mom, soccer mom, coffee mom - yuk no I am none of those things.  I time going to school just right so that I don't have to talk to those people.  I am a good mum to my children because they all have special needs and so for them I am perfect because I understand them.  3 have ASD, 4 maybe 5 ADHD. 2 are blind, 1 Cerebral Palsy.  They are my 'special interest'

Me and my daughter talk openly about how as an ASD person it's hard work doing all the pretending in front of people.  We laugh, we connect over it.  I never had that.  I was just alone.  She is 11, we laugh about the behaviour of NT people and she knows she's not odd or alone.  She knows that she's not quite the same but she also knows that there are lots like 'us' it's just a case of finding them.  I think I am just the right mum for them - maybe not for regular children, I don't know.  My children are all different in some way.  I adopt an attitude of celebrating difference for them and it's rubbed off on me!

I won't allow or at least I'll do everything in power to make sure they don't grow up feeling the way that I did.

I think it's all exactly as it's meant to be.  It's unfolded exactly as it should have done.

I love this forum.  It's been life changing for me.  I know that sounds dramatic but I mean internally life changing.  The understanding, The identification - it's been like coming onto dry land! 

Ah! Finally! Here are my people!  I am not alone!

I often wonder exactly why I started to realise, in my late 40s, that I'm really not NT. I'm 59 now. The idea that the brain is less'flexible'  makes sense. I reckon I was getting worn out by mimicking too. Then there is the whole business of the radical change in hormone activity. It's a lot to cope with. So much of what you wrote resonates with me,I never had children; I feel like a daft old woman when I'm in shops too!

People can be uncomfortable with silence... more talking means less thinking and self reflection... it is also a craving to belong to the herd... I guess we felt we never belonged so don’t have that anxiety so much???

Well said! It is good to see so many women here and all supporting each other x

I'm having such a hard time figuring out how all the threads/replies work too! It's so unecessarily complicated I feel. The old version was so much simpler and better. I totally relate to putting on the nt face, it is exhausting  Good luck with your diagnosis if you choose to pursue it

'They will only call it something else anyway so it might as well be what it is.' Yes, totally agree! I've come to exactly the same conclusion. 

Thank you so much. I do have a copy of the Sarah Hendrickx one but I started reading it and found the style of writing a bit hard going, I couldn't really get past the first few pages so was hoping to find something a bit simpler if that makes sense! Maybe I just need to give it another go. Some other good options in there too, thanks! I think it's just a case of making sure my mum is better informed

Ha! That is the classic! I don't do small talk.  When I text I do not say "Hi, how are you, hope all is good" - if you got a text from me there will be none of that it would just be "what are you doing' or whatever but it would get straight to the point or reason for contact.  I'm not going to ask you how you are unless there is some indication that you are not Ok!  Then I care and I will be very concerned but asking just as a meaningless string of words, absolutely not!  Sometimes I do have to do it but I get so impatient typing it out.  I will never get this time back spent with these meaningless exchanges!

Oddly I can do it with very old people, very disabled people or children.  I want to set those people at ease and so it has a purpose - does that make sense?  Only really in those cases, not with regular adults.  Regular adult do not need this coddling.  ASD people don't like it anyway - usually.

They must get some benefit from it that I don't understand otherwise why would they do it?

I don't like people doing it to me either, I mean asking me how I am when they don't care.  I find it all very awkward and uncomfortable to be honest.  I also don't like 'hugs' goodbye from people that I don't really know that feels painful to me.  I try to set the situation up to avoid it.  As my husbands family are leaving I'm like "Was sooooo lovely to see you, must dash to the loo" or something along those lines lol

Also the kissing on each cheek thing!  Yuk.

Way too much personal space invasion for my liking.  And talk of the weather . . .please! You know it's getting bad when there is weather talk!

I get the sense that they are uncomfortable with silence and so they just fill it up with chitter chatter.  I wonder why they do that.  I must ask one or is it just a habit?

I also don't like those kind of 'digs' with hidden meanings or feigning of concern and affection either.

I just don't like any kind of dishonesty or insincerity and all of it feels insincere and I can't wait to get away.

I sound terrible, now I am letting this 'thing' out and seeing it in typed words I realise it must sound so awful.  All of this is usually 'my thoughts' and that takes me back to the life long mantra of "I am not nice" "I am not nice".  I think I've realised that no I'm not but I am real and if say something to you then it's genuine and if I care or enquire then that too is genuine - it's not chitter chatter to fill up silence.

So nice to feel 'normal' here with others experiencing the world like me.  Like why do NT's say hello how are you when they don't care or even wait for you to say you're fine, it's just a throw away statement. I only say it when l want to know, which isn't a lot but at least it's genuine.

Thank you for replying. I work 4 days a week in a large HR department so know technically about 'reasonable adjustments' and work doing the right thing however also know the potential dangers letting work colleagues know if l do get a diagnosis.  My manager is so unsympathetic, she says shes not touchy feely however we get on ok because I'm not either. I had to smile when you mentioned about not recognising faces I have always had that issue too. 

I love hearing you guys share about yourselves.  I relate to you so much.  I'm not diagnosed but awaiting diagnosis but to be honest I don't think I even care about the label so much anymore because I know so deeply that I have Aspergers that if someone else can't see it or doesn't fit into a perfectly designed checklist I don't think I'll care so much.  I have my version of it whatever that is.

The relief of knowing it of finding who I am has been immense.  It's still a bit painful because I can't stop the honesty and the bluntness no matter how hard I try.  If I am going to speak it's going to come out and I don't want to upset people.  Mostly I don't but I can do especially if I am upset and I'm so over honest and it makes Neurotypcials feel uncomfortable I know it does - and then they go quiet and I know I've been a bit too much of 'me' and then I feel alone again.  When they go 'quiet' it's kind of painful because then you know they've seen it raw and that happens more as I don't try to hide it so much.

I also make people laugh with the honesty and that isn't so bad.  It can be humorous can't it!   I say the stuff that people are thinking but probably not saying.

I'm never really personally unkind.  I don't say someone is ugly or any of those kind of horrible personal comments - no that is not my brand of honesty.

All my life I tried to be like NT's and now I realise I don't want to be like them at all - in fact I positively wouldn't like to be them.  They have to do so much dishonesty don't they, so much pointless talking for talkings sake, pretending or concealing what they feel or what they think? Is that normal, is that what we were meant to do?  Maybe it's just easy for them.  Maybe that 'hiding' is how they don't feel lonely but isn't that lonely anyway surely?

Hiding yourself, so people like you but you are filtering yourself so it's not really you. For me that is so tiring.  I don't know I guess I can't understand them or how they experience everything differently, no more than a deaf person could imagine sound (I'm partially deaf - so allow me that analogy).

But I found some freedom in the fact that I like who I am and it's ok.  This is ok, it's ok to be this. Hurrah!  It's been liberating with a capital L.

I spent my whole life thinking that I wasn't ok - like my whole life!  Pretending and acting and keeping quiet so that no one else could tell.  All the acts and all the roles I play and I've kind of dropped them all.  Some I take out of the bag if I have to but it's not so much anymore.

I'm 43 and as a teenager and in my teens I drank alcohol and it made me feel more 'like everybody else' - not quite but def not so on the outside . . . did anyone else do this?  I don't drink anymore.

I've decided to tell people I'm ASD and to embrace it.  They will only call it something else anyway so it might as well be what it is.

I'm so grateful to read your posts, each one I read makes me feel a little bit more OK to be me.  You also make me laugh or smile because I understand what you are saying and it feels just like me.

Thank you :)

I'm fascinated about the "put the NT face on every day at work". It brings back memories from before my burn out, when I used to work. Do you work full time? It must be hard combining it with childcare?

When I look back I like had trouble with like feeling I had to smile at everyone and always say hello every time you cross someone in a corridor (actually when you observe NT's I think there are unwritten rules (I read it somewhere in a book about ASD too)  that you only have to smile and say good morning the first time you see them and afterwards you don't need to greet them)? But how do you cross someone in a corridor and not smile if you know they have seen you? Also as a teacher, I struggled because I felt I had to keep everyone happy and engaged all the time and was very sensitive to students' reactions.

I also got frightened because there are some faces of people I saw less frequently (like higher bosses) I couldn't quite remember their faces and functions and I would avoid having to walk through their corridors because I was worried I would not recognise and appropriately greet (whatever appropriate is supposed to mean). It was only during and after my burn out that I also realised that things like the confusing lay-out of building, claustrophobia, windows not opening, too much glass and stimuli and constantly changing rota and rooms etc were crazy even for an NT. 

In a sense I think many people would benefit from adjustments to work to accommodate for ASD tendencies. Unfortunately for me when I tried to return to my job, the work physician said, oh well you don't want to make this official, just ask your boss for these things. And unfortunately the boss after a month said, well this has taken long enough, it is time to pull your weight again and stripped me from my "entitlements".

From your post I make up that if you had a diagnosis you would consider telling your boss you have an ASD? Some people advise against it, some people are pro. I just don't know what I'd do in a future workplace.  Basically, it is discrimination if your needs aren't taken into account. On the other hand there is so much prejudice and misunderstanding- with the "oh you don't look it, don't let them stick a label on you, you are fine the way you are", through "we are all a little autistic" to being given the feeling that you are less because of the diagnosis. 

Hi I'm female newish here. Ive replied to a couple of blogs and even asked a question but then have no clue how to get back to find thread or replies,  so apologies in advance if you never hear from me again.  I have a 13 year old with Aspergers and going down that long diagnosis with him was like an awakening that I've got ASD too! Now considering asking for a diagnosis too, would seriously save me having to put the nt face on every day at work, so exhausting.

Hi moggsy, this happened to me. I'm a 62 year old woman self diagnosed, I took my son to a psychologist when he was 3 as he was showing lack of communication traits like my childhood. This was the first time I had heard of Aspergers it was 1991 and the psychologist suggested I also had it. My son is now 29, he had a tough time and attended the NAS help to work course a few years ago. Thankfully he now has his first job as a care worker which he enjoys and has been doing for the last 8 months and he is very good at it.

3 years ago I had trouble working full time as I was too tired, went down to 4 days, at 60 finding I was still too tired took 3 day job and got sacked after 3 weeks and ended up loose leaf updating and then dogsitting for 2 years. Sadly Dexter the dog passed away in Dec, so I went on ESA for 20 years depression......failed health assessment as mobile...got kicked off ESA....now on jobseekes and totally stressed out by it. I've just enrolled last monday on a 2 day 18 week social care course so I now have to sign off and do some course work before my next nap ha ha!

I recommend the book mentioned before "Women and Girls with Autistic Spectrum Disorder" Understanding life experiences from early childhood to old age by Sarah Hendrickx who is on the spectrum. 

I wish my very best to all of you on this forum and I hope the good moments in life help with the struggles.

xxx

Hi im a female im 29 n from the uk

I am so jealous you actually told your friends not to ring your bell before the appointed time!  That is so briljant!!  As soon as my bell rings I go in a kind of "let it happen mode" - don't know how else to describe it.  The mode I was in pretty much my whole life : let it happen and don't be a nuisance!  I get tired just thinking of how I made it through every day...

Good luck!! I hope you get some good support. it is strange how people especially family sometimes react strangely to diagnosis. I think maybe also their  initial reaction is a bit like: "I have known you for tens of years and I should have noticed and I didn't notice anything", so it is almost like a defensive reaction at first not to accept it. There are certain stereotypes: the boy who only loves the vacuum cleaner, doesn't make eye contact and can't listen. And somehow, if you don't fit that image, a lot of people don't see autism in it.  

Ohh nooo, the classic "everyone's a bit autistic" cringe cringe. It really is such a frequent remark. One that stops me telling people. 

Of course I think there is the issue, that as it often is genetic, there is a faint possibility that one of your parents also has traits, and if they have struggled a life time, it might be hard for them that maybe they also need some recognition for their struggles.

Here some titles on female ASD: 

https://www.amazon.com/Things-Woman-Aspergers-Syndrome-Partner/dp/1849058830/ref=pd_sim_14_2?_encoding=UTF8&pd_rd_i=1849058830&pd_rd_r=8GEV8W4KA2Q0R8W93FSR&pd_rd_w=o8pMf&pd_rd_wg=IrU50&psc=1&refRID=8GEV8W4KA2Q0R8W93FSR This book is meant for partners of. But maybe interesting. 

My problem is I've read many books and can't properly remember what I've read: I think I liked this one: https://www.amazon.com/Aspergers-Girls-World-Renowned-Experts-Syndrome/dp/193256540X/ref=pd_sim_14_4?_encoding=UTF8&pd_rd_i=193256540X&pd_rd_r=8GEV8W4KA2Q0R8W93FSR&pd_rd_w=o8pMf&pd_rd_wg=IrU50&psc=1&refRID=8GEV8W4KA2Q0R8W93FSR

There are also great videos by Tony Attwood on youtube you could show your mum.

I haven't yet read this book, maybe someone reading along has? It looks great: 

https://www.amazon.com/dp/B06XC9YC6S/ref=sspa_dk_detail_2?psc=1&pd_rd_i=B06XC9YC6S&pd_rd_wg=ya4uK&pd_rd_r=AGWZQ0V4SMCYNYE84ACZ&pd_rd_w=uFcGW

https://www.amazon.com/Pretending-Normal-Aspergers-Syndrome-Spectrum/dp/1849057559/ref=pd_sim_14_7?_encoding=UTF8&pd_rd_i=1849057559&pd_rd_r=FZRG4YK2T8H4Q30X1XWW&pd_rd_w=7ZR7u&pd_rd_wg=KYPw1&psc=1&refRID=FZRG4YK2T8H4Q30X1XWW

oh and this one looks very good: https://www.amazon.com/Women-Girls-Autism-Spectrum-Disorder/dp/1849055475/ref=pd_sim_14_21?_encoding=UTF8&pd_rd_i=1849055475&pd_rd_r=CZ1KK5NRMGX679FZ5XYS&pd_rd_w=S8Lt4&pd_rd_wg=ms6EC&psc=1&refRID=CZ1KK5NRMGX679FZ5XYS

But I'm sorry I'm not really answering your question. There are loads of books out there about female Late diagnosis ASD, but I'm not really sure which one would be good for your mum. Good luck!

Hi, glad I got it in the right place. Yes a year is a long time to wait, it was a real struggle to get on the waiting list, I couldn’t afford to go private, Here in uk that cost a great deal. I’m fortunate that my family are now accepting of me, it certainly explains some issues we have had over the years. When I First started to look at the pooibilty that it was an ASD they weren’t very happy, but over the time I waited for the assessment they have come to understand and when I was finically diagnosed they were surpicingly accepting. As were my few friends, one is herself on the spectrum. I’m disabled as well as having Aspergers and thus unable to work. I’m waiting for the follow up appointment at which we discuss what happens next and what if anything they can help with.

Thank you for your kind words!! It is lovely being in touch. 

I'm 45. I don't somehow feel my age - as I feel like emotionally I'm a lot younger. At a time some of my peers are becoming grannies, I am mourning the family life I never got round to creating. Now I have a better understanding of what went wrong.  But it still hurts. 

It is interesting that you say you are less inclined to hide as you get older. I read somewhere it is also more difficult to hide it when you get older - because you lose some of that cerebral flexibility of the youthful brain - so it becomes more difficult to pretend all the time. It is also a great relief not to be young anymore and I cringe sometimes when I see youngsters together on public transport and remember the pain and strain of trying not to do or say something wrong.

Nowadays I often think: "they must think I am a crazy daft lady". And then I tell myself, well someone has to be. In shops I notice I often eccentrically start weird conversations with shop staff and they seem to love it (I am good at connecting with strangers at their level/their personality). I might be crazy and weird, but I am nice crazy and weird I suppose - so I might as well embrace it? (but the other side is, that I often break into stress sweat in those same shops during those same conversations and afterwards need lots of time to recover my composure and stress levels...... so yeah, it doesn't come naturally, even my crazy small talk. 

So I agree, Mumtosix, it is very tiring....and being good enough and perfectly acceptable. Yes, maybe need to get that wisdom tattooed to my hands :-) 

Do you get any support after your diagnosis? Or did you just get diagnosis and then get on with it, you are an adult, deal with it? It must be quite a challenge dealing with a large family?