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Support thread for women with suspected/diagnosed/self-diagnosed ASD or ADHD

999 replies

EauRouge · 18/02/2015 09:12

Previous thread here.

Hello all, I know I'm new but the old thread was full, so here's a shiny new one. This is a thread for adult women who have ASD or ADHD, or suspect they do, to support each other.

Here are some resources that might be useful:

Links

List of female AS traits by Tania Marshall.

Article about women and girls on the spectrum by NAS.

List of female traits by Everyday Aspergers

Musings of an Aspie- Cynthia Kim's blog (one of the few sources I have found about being a parent with Aspergers)

Autistic Women's Collective

Recognising ADHD in women from ADDitude Magazine

Resources for women with ADHD from ADDitude Magazine

Adult ADHD support (coming soon by the looks of things)

Books

Aspergirls by Rudy Simone

The Complete Guide to Aspergers Syndrome by Tony Attwood

You Mean I'm Not Lazy, Stupid or Crazy?!: The Classic Self-help Book for Adults with Attention Deficit Disorder by Kate Kelly (I haven't read this one but I have heard it recommended many times- apologies if it's no good!)

Online tests

(Online tests are not 100% certain but can give you a very good idea and a starting point for talking to your GP if you're seeking diagnosis)

RDOS Aspergers quiz (the best one IMO)

AQ test

ADHD test

ADHD questionnaire for women

Info dump complete Grin

Please come and join in!

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Thread gallery
12
PolterGoose · 19/04/2015 17:23

This reply has been deleted

Message withdrawn at poster's request.

CrohnicallyInflexible · 19/04/2015 17:23

As well as being loyal and having a good memory for most things:
I have an instinctive understanding of maths.
I work logically.
I often see solutions that other people miss.
I see patterns in things- this contributes to my memory.
I have no qualms about immersing myself in DD's play, even in public (so long as it's not bloody dolls!)
I can focus (when I want to!) and shut out all distractions.
I am a very good writer- scored a perfect mark for an essay at uni!

CrohnicallyInflexible · 19/04/2015 17:28

A lot of crossover with polter's list. Though I forgot fairness/justice.

Lack of limiting inhibitions is what I was getting at with the comment about DD's play- I was at a 3rd birthday party with DD. 3/4 of the parents were sitting on the sidelines supervising. A handful of parents were following their children round, helping them on and off the bouncy castle, or standing awkwardly on the bouncy castle while their child bounced, that sort of thing. And then there was me- throwing myself in wholeheartedly and having a great time! (At least till the bouncy castle was packed away and we all had to make small talk while our DCs ate)

EauRouge · 19/04/2015 17:46

Definitely fairness and justice, I have a very strong sense of those.

And I'm amazing at pub quizzes.

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DaceyMormont · 19/04/2015 19:31

I am also a pub quiz maven! But haven't done one in years.

Another positive I think is that I do not lie or gossip or talk behind anyone's back. I know those things are not exclusive to AS, but, I don't know...it's just not in me to do that. Even at school I was a bit baffled by why one would be like that. Part of feeling as though I am forever standing to one side, watching the behaviour of another species ConfusedSmile

Straycatblue · 19/04/2015 20:46

I had forgotten about being good at pub quizzes! I guess it comes from having a good memory, I absorb all sorts of facts that other people aren't interested in.

There are some good positives here! Im trying hard tonight to not focus on the negative but it is hard at times.

As well as positives does anyone have any funny/typical stories related to their asd/aspergers/adhd?

For example I take things literally, last week I texted my friend to encourage her to come outside as it was a really nice sunny day and she texted in reply "Im coming out, you've twisted my arm!"

I was so perplexed as I couldnt recall how I could have injured her??
Arriving a few minutes later,she shouted over to me laughing "You arm twister, Im supposed to be working from home today!"
I replied that I was sorry that her arm was hurt but that it couldnt possibly have been me???
She looked at me like Confused and then I realised she didnt mean literally, it was just a saying. Blush

EauRouge · 19/04/2015 21:09

Oh, I've got one.

I've been a nail biter since I was about 7 or 8. I remember hearing about a nail biting competition on children's BBC. I didn't really understand how the competition would be judged but I figured I could join in and the habit was formed- I've bitten my nails ever since.

I was always really confused about the nail biting competition; I could remember very clearly the presenter saying 'nail biting competition' but I always wondered why they would encourage a child to do that.

I finally twigged. About a month ago. FFS.

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BertieBotts · 19/04/2015 21:40

Oh god I make a typical ADHD story every single day :)

The last one I can think of (sorry, this is a little disgusting!) - I was babysitting for a friend. I had to be there at a set time and I was getting ready at the last minute (ADHD fail #1). I went to change my top from my pyjamas I'd been wearing all day (ADHD fail #2). Realised that I really should have had a shower at some point in the last two days (AF3) and my armpits were a bit sweaty, but I didn't have time (Literally leaving 30 seconds to get ready: AF4) so I decided to rinse them with water at the sink. All fine, not perfect but much better, changed top, grabbed stuff, ran out of the door.

When I got to the tram stop, I realised with horror that my HANDS now smelled of armpit. I hadn't washed them after cleaning my arms (AF5). I didn't have any kind of spray, wipes, or even a bottle of water in my bag (AF6). Looked around but the water fountain hadn't started running yet and the nearest public toilet was too far to risk missing the tram (AF7 - sort of. I think a more organised person might have been aiming for one tram before they needed to.)

By the time I got to my friend's house, my hands were horrendous - I'd tried to lick the smell off Blush, then rub a coin on them, and eventually rubbed them in mud and cleaned them on my jeans. None of those really worked, although the mud mostly seemed to neutralise it. I'd thought, oh, I'll just pretend I really need the loo when I get there and wash them then, but I forgot (AF8) In actual fact, friend was finishing off baking a cake and then rushing out, so she didn't even notice or go anywhere near my hands.

But this was one I went through at the time, kicking myself. It's total swiss cheese theory stuff - if I'd managed just one of those "fails" the situation would have been 100x less ridiculous, but I mismanaged all of them.

Positives of ADHD for me:
I'm interested in so many different things I have common ground with a lot of people and can usually find something to talk about that I'm genuinely interested in.
My mind (apparently) works a lot faster than most people's minds do.
I am the anathema of awkward silences. Literally, more than one person has declared me thus.
I am a mine of totally useless information. I am a bit crap at pub quizzes, though.
People say I am creative. I'm definitely good at seeing many possibilities for a particular situation, just as long as it's hypothetical and/or happening to somebody else! (I can only do it for me if I think to write it out or talk about it).
I spend a lot of time thinking about why something is, so I tend to be able to explain things in very comprehensive, easy to understand ways.
I am not concise but I am articulate... at least in written communication.

EauRouge · 19/04/2015 21:50

I don't know if it's appropriate or not for me to be laughing at these stories Grin Sorry if it isn't!

I forgot another positive. It's kind of a negative too. I have very sensitive hearing which means a lot of noises are hard for me to cope with, but I can tune a guitar by ear so it's spot on and I can write vocal harmonies really well. It's one of the only things I'm really good at. Probably a bit niche Confused Makes me a good backing vocalist though.

I have to be careful to stand at the back when I'm watching live bands because I cannot help doing a wincey face at every bum note. There are always bum notes, it's a fact of life, but it's worse when there's someone standing in the front row doing a wincey face every time.

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BertieBotts · 19/04/2015 22:02

Oh yes please laugh :) I thought we were sharing them so we can laugh, actually.

That's true. I am also pretty sensitive in hearing. I can sing harmonies almost instinctively. I remember one time when my sister and I were supposed to be brushing our teeth but one of us just randomly started to sing "Bum bum bum ba-dum bum bum" and the other joined in and we went on for ages - totally and utterly making this tune up as we went along but it sounded like an actual song and the harmonies were just in place too. It was brilliant.

I forgot to add I'm also a massive perfectionist, which I didn't really realise until recently because I'd always thought I was a bit half hearted or happy to put up with half done stuff, which I am, but I'm also a perfectionist. I have really high standards and I can't understand it when other people don't. There is a hairdressers near here called StarLook (It's German, the name isn't that weird) where the sign has been made using Wordart and the "logo" is a photograph of a man looking through the OO like glasses. It looks terrible and every time I go past it I am aghast and wonder how on earth they thought it was acceptable to represent their business.

But yeah, I think that's what stops me from doing things - DH was going on about me making money via something like Udemy, and I've been wanting to write a book for years, but I always think that my stuff is no good, but then sometimes when you look around you realise that there is quite a lot of successful shit around and it surprises me, because I always think something should be much better if it's going to be successful, but it doesn't seem to have to be.

On the sensory stuff, I can pinpoint a bad smell far before anybody else is bothered by it. My mum calls this "Grandma's nose" because my grandma was the same, she used to make a face and run around the house looking for the off milk Grin

BatFoxHippo · 19/04/2015 22:39

I love the latest posts, the positives and the funny stories, will try and think of some too.

CrohnicallyInflexible · 20/04/2015 10:14

eau I had to read about the nail biting competition 3 times before I got it!

When I used to watch TV with my dad, often in the credits there would be a man with the same (fairly unusual) surname as us. Every time my dad would say 'look, there's your great uncle John'. One time (when I was a teen) I asked if that was grandad's brother or grandma's brother. Turns out it was my dad's idea of a joke. I had told people at school I was related to John and everything!

CrohnicallyInflexible · 20/04/2015 10:17

Oh- and I've just this minute realised that if John couldn't have been grandma's brother anyway, as she had a different surname before she married!

EauRouge · 20/04/2015 10:54

eau I had to read about the nail biting competition 3 times before I got it!

You got it quicker than me, it took me 25 years Grin

Love your Uncle John story.

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elementofsurprise · 20/04/2015 12:00

Hello again. I'm sorry to bring this up when everyone's talking about funny stories/positives, but daren't ask anywhere else in case I ask wrong or it's an ASD thing.

Anyway, does anyone know much about ASD and trauma? I know PTSD was mentioned last page, thing is I'm having what seem to be massive trauma symptoms getting worse but it's related to the 'part' of me that throws up the ASD traits.

What I mean by this is, I have some kind of depressiony/anxiety thingy with nightmares and intrusive memories, triggers that set of what I conciously know are upsetting memories etc. I also, through private therapy (NHS think I'm a 'difficult' waste of space) have begun to be more aware of what I'm feeling instead of automatically supressing it. (Not that I didn't feel before, but it would come in overwhelming whooshes.) This has led to the emergence of a 'voice' inside me, that is like a terrified child version of me. It's a bit like an internal monologue, but much quieter and sort of related to a feeling in my chest/stomach (where I feel anxiety). The best way to explain it is halfway betwen an internal monologue/voice and a feeling. I am feeling it more and more of the time, and if I 'tune in' I can hear/feel the words. "I'm frightened!" (This is by far the most common one), "Am I good enough yet?", and "Stop them hurting me!" Often it is just a scream/baby crying, or terrifying white noise. Again, it's not completely audible as such, more like a feeling that is so distinct I can hear it. Occasionally if my guard is down I will speak the words out loud, in a babyish voice.

Anyway, if something happens that I might be having an Aspie reaction to (if have AS), this is this part that is feeling it, or saying something in a bemused little voice in my head. So it's very complicated to figure out whether it's pure trauma or an ASD thing, and whether I could actually confide in someone about the original memories thrown up or if they just won't get why that thing affected me so much. Not helped by wildly varying opinions on what I'm 'allowed' to be upset or traumatised by (CMHT definition is very narrow), and knowing whether that opinion is based on the other person's (potential) dysfunction or is reliable! In a lot of cases I don't know whether I should stand up to someone and defend my point, or whether I'm being unreasonable, and it doesn't help that people seem to understand some things but the things that have REALLY hurt me are seen as weird/irrational/not a big deal. So does that man they relate to Asperger's? Or the typical invalidated child/adult with trauma/emotional issues??

I know what I'd like to happen/how I'd like others to react, or support me... things I know help me feel better and work through stuff... but I have no idea if those things are rational/reasonable, or whether I'm the odd one out who appears totally irrational to NT's. Or whether I'm NT, but totally emotionaly fucked up so I am needy. It is driving me mad(der) because I don't know how to view myself, am I being harsh to myself or too lenient?! I don't expect any of these things/support from people exactly (and am fairly alone with this atm), but it's nice to know if in theory it's reasonable or a fucked up coping mechanism that should be denied me.

If anyone can shed any light on any of this, that would be really helpful, thank you.

PolterGoose · 20/04/2015 13:36

This reply has been deleted

Message withdrawn at poster's request.

EauRouge · 20/04/2015 13:51

Hello again, element :)

I don't know much about the human brain (although I do have one, honest), but there are quite a few links between trauma, ASC, PTSD, personality disorders, and anxiety.

This blog post describes the link between autism and trauma.

This is a good example of how different things can be traumatic for different people. This part of your post> Not helped by wildly varying opinions on what I'm 'allowed' to be upset or traumatised by (CMHT definition is very narrow), and knowing whether that opinion is based on the other person's (potential) dysfunction or is reliable. - NO ONE can tell you that you can't or shouldn't be traumatised by something and if a HCP has told you this then they are a dick and should be in a different job. It is hard to do, but try not to compare how other people would react to something that has traumatised you. Everyone reacts differently.

I have only skimmed this article (DDs keep interrupting so have given up!), but it is about executive functioning, emotional regulation, stress and ASC.

I hope that helps a bit.

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CrohnicallyInflexible · 20/04/2015 19:44

element I'm afraid I don't know much about ASD and trauma. However, I have experienced similar to you in that I was deeply affected by something that no one else was. Every time I thought of the event, or was reminded of it, I experienced the same emotions (anger, frustration, sadness) as the original event, to the point where I could experience a meltdown just from thinking about it.

The thing that made the most difference to me was changing my meds a couple of months ago. I can now think of the event without reliving it or melting down from it. It's like I was stuck and the meds have allowed me to process it and move on.

I don't know if you've considered or tried meds before, but just thought I'd throw my experience out there.

CrohnicallyInflexible · 20/04/2015 19:52

Oh- and it's looking like my 'upset stomach' that I've been suffering with is actually a Crohn's flare. I need to go on steroids. Last time I was on steroids I went kind of crazy (known side effect!). I'm trying a different one this time, but I'm still kind of scared. Hopefully the fact that I'm on sertraline now might help?

elementofsurprise · 20/04/2015 19:54

poltergoose I suspect it's a very mild version of the process that happens in Dissociative Identity Disorder (fomerly mulitple personality disorder). I just thought it might be an ASD thing instead; and wondered if anyone exerienced their 'real' ASD response in this way, despite putting an 'acceptable' face on it.

I'm not sure about CBT, at all. I think it's a load of rubbish (sorry!) in my situation. It seems like it's missing a bit, somehow. I can tell myself somethings an "irrational" thought/feeling but it doesn't help me deal with the pain from the experiences that led to the irrational belief in the first place. I was assessed for Cognitive Analytical Therapy (amongst others) which is supposedly a more in-depth relation of CBT, and it was awful. One of the activities was to look at a list of statements and decide how much I related to them. Eg. "I'm not worth as much as everyone else". The thing was, I knew I'd felt a lot of those things growing up, but have since identified and rationalised them myself. But knowing that I am theoretically worth the same as other humans doesn't stop me feeling I'm not! The therapist decided I wasn't "suitable" because I couldn't shed any light on what I was doing that made me feel so bad (she actually said that she couldn't figure it out). I tried to explain I thought it was trauma from the past (the clue being in intrusive memories and nightmares, and what i'd worked out) making me feel bad, but she was just blank on that front - insisting it must be my behaviour that is wrong. She also noted I dissociated somewhat when talking about past expereinces and became "distant and childlike", but no suggestion why/what to do.

When I started seeing the "psychotherapeutic counsellor", it sort of "hit the spot" in a way the other therapies didn't. I suppose it's like I needed someone else to validate me and treat me like a worthwhile human before I could fully learn to treat myself that way. She also seems to "take me as I am" rather than being impatient or twisting what I say to fit a narrative, which (non-therapy) MH staff were wont to do. And she's gentle when I talk about stuff that makes me dissociate. Gosh, when I think about the CAT I realise I've come quite far! It's just very can-of-wormsy, but I guess it's better to hear the voice/pain than just have it affect me subconsciously.

The problem is being kind to myself when the world isn't, and needing support but it being very thin on the ground - the original feelings of terror and helplessness are amplified. People do kind of make sense to me, once I factor in their experiences/issues, how their day's been, etc. - so I can navigate the world to some degree, but it is a hostile environment in which to recover.

I am interested about why psychotherapy is deemed unsuitable for ASD though - is it that it obvs doesn't help the ASD, or is it also unsuitable for trauma running alongside?

Thank you, EauRouge, going to read those links now.

Apologies for the rather long post, but it's helped me think through things a bit more. I think my need for empathetic interaction might signal pure trauma, not ASD, so I will probably just lurk now, if no-one minds, as your experiences are helping me fill in the picture of Aspergers while I figure out if it relates.

Wine all round!

elementofsurprise · 20/04/2015 20:02

Thank you, Crohnically, yeh I've tried meds but the problem seems to be that anxiety meds make me more sleepy/depression worse, whilst depression meds can make the anxiety worse, but usually do nothing or make me feel 'supressed'. My symptoms arent stable - sometimes insomniac, sometimes sleep too much, sometimes can't move for depression, sometimes can't sit still for anxiety!

Good luck with the steroids, what does your doc think about the different type?

CrohnicallyInflexible · 20/04/2015 20:13

Which doc? My psych has discharged me (I only saw him for the diagnosis). But this new one is supposed to have fewer side effects than the one I was on before.

elementofsurprise · 20/04/2015 22:31

Sorry I wasn't clear - I meant the doctor who prescribed the new steroids. Did they give much indication of whether this type of steroid is likely to make you "go kinda crazy" again?

Hope it works out anyway x

CrohnicallyInflexible · 21/04/2015 06:33

It shouldn't as it targets the affected area rather than the whole body. Most NTs find that this one is fine and doesn't affect their moods too much. But dr google found a woman with AS and bipolar and she had to stop taking it because of the affect on her moods, so clearly it does affect some susceptible people.

At least I'm prepared this time though- last time they didn't warn me about possible side effects (gave it me in hospital, so I didn't even have the information leaflet to read) and I was really scared until I found out it was just the meds.

SpringTown46 · 21/04/2015 22:14

Going through assessment procedure. My husband has been asked to complete the questionnaire that would normally be done by my parent. Obviously there are a lot of 'don't knows'. But everything else, he has ticked 'no problem'. Because he genuinely believes this to be the case. So, I'm stuffed for a diagnosis now, aren't I?

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