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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!

OP posts:
Thread gallery
12
Astarael · 25/05/2015 18:26

Thank you Eau.

Yes, things do make more sense now. I've felt 'wrong' forever, it's oddly reassuring that it may be a 'wrong' that others are too rather than just being a completely different species! My life has followed the pattern of very well behaved, excessively compliant child to out of control emotions and the beginnings of anorexia in my teens to a place where, as an adult, I am very in control most of the time. But, the more in control I am outwardly the more I am struggling with inner issues. My anxiety is pretty out of control at the moment.

I thought some questions in the test odd. For example there wasn't a section for 'outwardly manages social interaction but then obsesses for days after worrying that she hasn't interpreted what the other person meant correctly' or 'interacts normally with others due to constant inward narration reminding her of the required social protocols'.

I am definitely seeking a diagnosis. My life is a series of all consuming fixations and i can't be at peace until I have an answer to this question now.

BertieBotts · 25/05/2015 18:40

I had a massive argument with my GCSE English teacher because she refused to accept what a character's name was. The name was not actually referenced in the text, but there was a section where her mother speaks to her in Chinese, and the stupid teacher took a random part of the phonetically spelled Chinese and insisted it was the character's name.

I hated English Lit. I actually failed the exam. I am an English teacher now. But I teach it as a foreign language, so no bloody symbolism, just fascinating conversations about minute differences between words and grammatical oddities. I love it!

SouthWestmom · 25/05/2015 18:50

That inward narration is exhausting! I tried to explain it to a friend. Now I'm thinking I want to tell you this but ived told you two things and I need to ask you something about you so in five minutes I can say x etc

CrohnicallyInflexible · 25/05/2015 18:56

noeuf- Especially when it comes to 'oh no, she's crying, what do I do? Ask her what's wrong? No wait, she said something about x. Do I know anything useful about x? Quick, say something! Anything! No wait, maybe she wants a hug. Do I hug her? Oh, I could give her a pat on the shoulder, that's less awkward. Or offer a drink, people like tea when they're upset, right?'

So my friend is crying hysterically and all that actually comes out is "erm, sorry about that" hand on shoulder "cup of tea?" practically runs into kitchen

LeChien · 25/05/2015 18:58

Hello Astarael, I agree with you about the tests, I found loads of the questions were all or nothing and didn't allow for a scale between extremes.

LeChien · 25/05/2015 19:02

Yes Chronically! I'd also be thinking "Oh god oh god oh god, am I going to have to hug her?"
And if I do the moment has usually passed and it's just plain awkward and reinforces the fact that hugs are not good!

EauRouge · 25/05/2015 19:21

I don't know how to deal with other people's negative emotions either. I know you're meant to say 'what's wrong?' when someone is upset, but after that I'm lost.

Funnily enough, I have been told that I'm a good listener and that I give good advice. I wonder if that's because I apply logic to situations, because I don't think I come up with anything amazing or insightful. Often I wonder why people didn't think of things themselves, or maybe they did and just wanted someone else to say it. Humans are weird Grin

OP posts:
SouthWestmom · 25/05/2015 19:35

And I'm always upsetting people and merrily going on my way with no idea at all.

BeyondDoesBootcamp · 25/05/2015 20:08

Post meltdown, just need to check in with some people who know how shit i am feeling :( like a naughty child who has had a tantrum :(

Need to sleep now

Astarael · 25/05/2015 20:09

See, I'm okay at comforting people. And I'm okay with hugging (but ONLY if I have initiated it unless it's my dd. This, together with the fact that I am not naturally tidy, makes me doubt myself on thinking ASD.

But, although I am not tidy I love organising things, patterns, lists and jigsaws which I think does fit into the ordered world type picture. And regarding the hugging/comforting I would analyse my performance after and worry e.g. that the other person may have thought I was coming on to them or that I wasn't sincere enough in my concern.

EauRouge · 25/05/2015 20:34

Beyond, sorry about your meltdown. Can you get some rest somewhere nice and quiet? Look after yourself Flowers

Astarael, not everyone on the spectrum is a neat freak. I'm a total disaster! Have a read on executive functioning, it explains about some of the difficulties someone with ASD might experience. Everyone is different; I'm very disorganised, rubbish short term memory, always losing things etc.

OP posts:
CrohnicallyInflexible · 25/05/2015 20:48

beyond hope you get some sleep tonight and feel better tomorrow.

astarael I'm not especially tidy either, but love organising etc. I tried to clean the house the other day, but instead emptied everything out of my bedside drawer and went through, binning useless bits and putting it all back nicely.

I'm weird when it comes to bodily contact, I struggle to physically initiate anything (but I can ask certain people for a hug) and prefer firm pressure, so would prefer a proper hug to someone touching my arm. But there's only certain people I like getting hugs from, anybody else I will just freeze and not reciprocate. Like chien says if I do initiate a hug, it's something that I've thought about and prepared for and missed the 'moment' (right, it's time to go home now, so I'll go and say thank you for dinner. Oh! she's just standing here looking at me. What have I missed? She's just hugged DH, maybe she wants to hug me too. How do I start a hug? I'll just hold out my arms. But what if she doesn't hug me? I'll count to three then just go for it. One, two, three! lunges at MIL who has given up waiting for a hug and takes her completely by surprise)

LeChien · 25/05/2015 21:03

Beyond, hope you feel better tomorrow.

Body contact is definitely a weird thing. With dh it's generally fine, but on my terms, sometimes I don't want any contact at all. If I'm feeling not right, I feel better if dh hugs me heavily around my shoulders (guessing that's a deep pressure thing?). I hate being touched on my face or head, I'm almost phobic about anyone touching my nose Confused
With my dc (and I hate that this is how I feel) I'm not very tactile. I am with ds3, but he is still young enough to be "mine" (hope that makes sense and doesn't sound odd). I almost find it easier to be with ds2 because he doesn't like contact either. Ds1 is lovely, and comes and drapes himself over me lovingly, and I have to stop myself from pushing him off :(

When we were interviewed about ds's assessment, a lot was mentioned about objects, does he carry one (no, he doesn't), but I have had a lightbulb moment tonight that I do. Up until a few years ago I always had to make sure I had my inhaler with me, but it was beyond an asthma thing, it was a comfort thing. Now I carry my phone, if I don't have it I feel very panicky and lost, even when dh has his so there's no need to have it.

Sorry, I keep coming and writing loads of things, but so many things start to make sense!

SouthWestmom · 25/05/2015 21:16

It's so weird all this remembering stuff. Freezing when hugged - my teacher hugged me and then apologised because I went rigid. I hate cuddles unless I'm bigger than the person - can cuddle my small dcs, feel trapped by older ones. Hate being touched unexpectedly - can feel it afterwards and need to rub it off for ages.
Massively stressy as I'm going to the Gp to ask for dc referral tomorrow and I'm always there for me or dc and I think they think I'm neurotic but normal.

LeChien · 25/05/2015 21:27

Yes, the feeling it after! I have to control the urge to wash my hands after contact with loads of things.
I can't wear makeup or any creams and lotions because the feel of them is unbearable.

ToadsJustFellFromTheSky · 25/05/2015 22:45

Speaking of meltdowns, how do posters here find they affect you? I know that for lots of people with ASD (especially children) a meltdown will cause them to lash out at other people but that's never been the case for me. Whenever I have them my upset is always taken out on myself via self harm, panic attacks, etc.

A lot of the time nobody would know there was anything wrong because my upset is always turned inwards.

I have no clue if that even makes sense but I hope it does.

ToadsJustFellFromTheSky · 25/05/2015 22:47

Also, maybe a bit of a personal question, but how many posters here have any RL friends? And if you do, do you have many or just a couple? Do they tend to be male or female?

Bowwowchikkawowwow · 25/05/2015 22:50

I found some of the questions a bit weird.

Support thread for women with suspected/diagnosed/self-diagnosed ASD or ADHD
Bowwowchikkawowwow · 25/05/2015 22:52

I was just reading upthread about the strong reactions to patterns, tree bark. I have a really strong aversion to velvet, just typing it is making me shudder. I could almost start retching at the thought of it.

Bowwowchikkawowwow · 25/05/2015 22:57

I have rl friends who are mainly other parents of children with ASD. I meet them weekly for a support group, and we will go on ASD related things, courses, Autism show etc.

Its very obvious when people are getting on my nerves, I find two faced people very difficult to cope with.

There isnt anyone really who I could ring in an absolute emergency and ask for a huge favour.

BertieBotts · 25/05/2015 23:30

It's weird how often the ADD/ASD things overlap and I relate a lot but then sometimes they don't at all. I love hugs and I don't have any problem navigating social situations in person except that sometimes I talk too much and forget to give the other person a turn. Blush

I don't know if I have meltdowns as such but when I get really upset about something, all of my senses go "off" - my vision blacks out at the edges, hearing sounds as though I'm underwater, time/movement is slow, I'm really physically aware of my heartbeat, I often shake and I want to curl up into a ball and protect my stomach area. (My mum is into energy so I want to refer to this as the solar plexus but, yeah, in layman's terms it's the abdomen.)

But - I don't really have many friends. I have people that I would consider friends but then I realise that they're much closer to other people and I feel hurt, somehow. I haven't had a best friend since secondary school, we fell out and I wrote to her a few years ago, but she's not interested. I meant to post about this a while ago, actually. I find that I meet somebody, and I get on with them, and everything is great and I think that I've made a friend and of course, they'll have other friends who they are closer to, because they've known each other for longer or they have a shared interest or whatever, but then over time, I'll realise that they have met new people since meeting me, sometimes even people I've introduced them to (because for some reason I love introducing people, even though they end up stealing my friends Confused) and I realise that they've been meeting up, calling/texting each other to chat and yet I'm still at the acquaintance level.

It's clear there's a step I'm missing somewhere, but I don't know where it is. It's probably that I don't tend to think to arrange things to do, combined with a really crap sense of how time passes, so weeks and months go by and I feel happy like I've just seen somebody, but for them weeks/months is ages since they have seen me, so they've moved on. I also don't invite people to my house. It's not embarrassingly messy any more, but it used to be for a long time, and I still stick to that fear that somebody might see and so I'm more used to avoiding people wanting to come over than to inviting them. Add to that that it's a bit awkward anyway, because it's so small so DS is awake if we have evening visitors, and DH can't really go off and do his own thing and he's introverted so he doesn't enjoy socialising with random people.

I enjoy talking/chatting on the phone, but I always feel really awkward about calling somebody, and have no idea what the etiquette is, whether it's okay just to phone on the off chance, or what to say to begin the conversation.

I suppose I want a step by step, broken down guide to how other people socialise, but I know that's a bit weird and probably most people don't really think about it and just do whatever feels right to them.

Bowwow - I dislike velvet but it doesn't trigger the same revulsion in me. Some fabrics are bad, anything which resembles tights is awful.

LeChien · 26/05/2015 00:08

I can't stand silk. Makes me feel all cringey thinking about it.
I have 2 people that I would consider friends. But I rarely see them. Sometimes I wish I had more friends, but most of the time when the dc are at school I'm happiest on my own. I'd rather have no friends than friends I can't be myself with.

I don't know f I have meltdowns. I get a feeling when overwhelmed/too much noise/being crowded like my head filling up with pressure and I can't hear properly, my leg starts twitching and shaking and my fingers flap against my palm. At this point I'll usually disappear for a bit to calm down. Twice it's gone beyond and I've had to walk out or I felt like I'd scream. Occasionally when things really get on top of me I'll have a massive cry for a few hours, which is odd as I never usually cry.
As a child/teenager, I got the head pressure feeling, but spent so much time alone maybe I didn't ever get to that point? I don't know.

BertieBotts · 26/05/2015 00:31

I hate silk, too. DH loves it and it makes me want to cry! Even the word. Ugggh. He also loves LIGHT TOUCH which is just WRONG. :o

CrohnicallyInflexible · 26/05/2015 02:08

I can have big meltdowns- throwing stuff, self injury, hysterical sobbing. I rarely hurt anyone else any more (did a few times as a teen) but I might shout and swear at them. In public I don't tend to have such big meltdowns, I have 'internal' ones where my heart is pounding, I shake, sweat, feel sick, dry mouth and can't move or talk or look at anyone.

As they are primarily anxiety driven, though present as anger, the more generally anxious I am the more/worse meltdowns I have. They seem to go in cycles too, I can have frequent meltdowns for a few months, then none at all or very rarely for a couple of years. Things are very stressful at home at the moment, and I'm in the worst cycle since my teenage years, and it's been about a year now. They have been a lot better since switching meds though.

The annoying thing is both DH and I can recognise when I'm heading that way, but I have trouble getting myself out of it. We haven't yet found a reliable way of stopping them in their tracks. I can sometimes leave whatever it is that's upsetting me, if it's an external stimulus, but I might need help as if I get too worked up I struggle to initiate anything. But often it's something I can't just leave, or its my own thoughts! And while I might be able to distracts self (or be distracted) it only defers the meltdown, it doesn't prevent it.

I think the meltdowns are the worst aspect of ASD for me at the moment, they were certainly a huge driving force behind seeking a diagnosis.

BeyondDoesBootcamp · 26/05/2015 04:44

I have both 'internalised' and self harmed in the past, and 'externalised' as i did yesterday (throwing brio track at a family member for not letting me calm myself down, they just kept picking on at the thing they had said that upset me, when i couldnt find the words to explain my way out of it - if that makes sense?) i dont know if they are real terms, thats just how i'd describe it.

So, i shouted, swore (in front of elderly family members too Blush ), threw toys and then fell into a ball sobbing with my hands over my eyes. Then about half an hour of rubbing my lip after i'd stopped crying. The head pressure had only just passed when i fell asleep last night. And now i feel like i have proven their point that i am a hypochondriac drama queen and there is nothing wrong with me :(

And now yet again i am awake at 4am
.

Other things...

Re friends, i have one friend who lives quite far away. I see her rarely and can cope with that as i can 'act' for short periods of time, its just hard work.

Oh and kind of related to feelings of clothing. I cannot handle or even look at sticklebricks, they make me feel sick.

I also cant hug. I can cope with hugging dh and the children, but only when i want to (and then when i want to, im then the one that is clingy and annoying - which is another thing i recognise in ds1, he will not leave people alone when they tell him toh). I get the 'touched out' feeling when the kids are around, i'd always attributed that to breastfeeding, then it didnt go away when i stopped

Someone said about no cream? I'm the opposite, i have to moisturise (especially my hands) or it bothers me, takes over all other thoughts. I have psoriasis (which again, i had blamed) but this is all the time, even when it isnt flaring.

And finally (epic post!), tidiness. I am a monica. Except, when i havent got the time (or now, the health and ability) for it to be perfect, i just dont bother at all. All or nothing.