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Neurodiversity support thread: Women with suspected/self-diagnosed/diagnosed ASC & ADHD

986 replies

EauRouge · 10/06/2015 16:45

No sign of our own forum yet, so for now here's a new support thread for women on the autistic spectrum and/or with ADHD. Newbies more than welcome!

The old thread is here.

Here are some helpful links for newbies:

List of female AS traits by Tania Marshall.

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

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!)

I took off Tony Attwood because it was about people with autism rather than for people with autism. Anyone else got any book recommendations?

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

If any of those don't work, it's because I'm cooking the DDs' dinner and I'm shit at multitasking. What's that burning smell?

OP posts:
LaetitiaFrittata · 25/07/2015 12:54

Gumblebee - welcome! Can you explain the codes you've posted with your diagnosis please?

Gumblebee · 25/07/2015 13:03

Hi Laetitia Smile

The F84.0 one is the code for autism in the ICD10 which I think is the main manual used in Europe, and the 299.00 is the code for autism spectrum disorder in the DSM V, which splits it into levels, level 1 being the least severely affected. They gave me both codes.

I'm a bit confused, though, because DSM 299.00 level 1 correlates with what used to be Asperger's in the DSM, before they did away with Asperger's, and my report says that looking for information on Asperger's might be the best way to find information, but the ICD10 code they've given me is F84.0 autism, rather than F84.5 Asperger's.

Anyway.

It feels weird!

PolterGoose · 25/07/2015 13:39

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Gumblebee · 25/07/2015 13:47

It's only me posting without a diagnosis that I had a problem with Grin I have double standards...

No l, I didn't have delayed speech. Weird, but not delayed Grin

This thread has been so helpful for me, all those other women like me Smile

PolterGoose · 25/07/2015 13:52

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StarshapedPencilcase · 25/07/2015 16:18

Hello,
Occasional poster here who's name changed to use this thread.

Not seeking an official diagnosis as I don't feel that would help me - and I am quite an odd case so might not get one. I mostly have good people skills now, but wouldn't have said I did until about age 30. They are all self-taught from psychology textbooks and therapy I did for other reasons. (It was like an extra sense being woken up. Before that I used to think things like it was pointless saying hello to people at work because they were always there like furniture was, it was annoying for them to expect otherise; later I even became good with small talk. Now I am very high on BOTH systematising and empathising. Though sometimes the empthy is a bit "in my head" and I don't always manage to act according to what the other person feels or likely feels.)
I also took a very long time to learn things that aspies have difficulties with - there are so many tiny things I recognise on tests which I had no idea meant anything; one I saw today in a link above was difficulties with clocks. I was extremely bright as a child but it wasn't until my mid teens I was truly comfortable reading clocks, although I could get by without people noticing. There are tons of little traits I have like this, and it would get very boring, and probably exceed the permitted word count, if I were to list them all.

During university and since my friendship groups have always included people wth aspergers, and a majority who feel they have traits. I worked for a while in a charity that supported people with various problems including autism and I always clicked very well with people who had it.
Yet it never occurred to me that I might actually have it. A few years ago a family member younger than me was diagnosed with it. (An older relative also always seemed like a classic case.) For some reason earlier this year I looked at some lists about women with aspergers and there were only a handful of things I'd never had (there were things I'd grown out of in my twenties, and a few things that had only become a problem when I got a bit older, as a separate medical condition made me more tired.)

The crucial thing about it though has been understanding what it's now easy to see as 'meltdowns'. (TBH I don't feel obstructed by any of my other aspie traits, only this one.) I remember feeling when I was about 10 that there was something inside me I simply couldn't control in those tantrums, whilst I was good at being able to control myself in many other ways, that was just impossible. Lots of running off to spare rooms or toilets in workplaces to try and contain the little bouts of weird rage. Trying not to bite the inside of my mouth (which, when I was younger was often raw from this method of trying to contain myself during the 'meltdowns'). For a long time I linked these tempers with childhood trauma and bad learned behaviour, (my mother had a weird temper too, and she has more aspie traits than me, but because we don't have monotone voices and look 'well-turned out, I never connected either of us with being aspergers until recently understanding there's more to it than that.) These tempers were weirdly resistant to all the stuff that helped the other issues that came from those, as if one was trying to fix a physical matter, like a nose shape one disliked, or a missing limb, just by thinking about it. They still occurred although I was able to see other people's point of view when I thought about it. It was just too annoying! I can certainly reduce the 'meltdowns' by avoiding, for example, annoying material on the internet - although feeling bad due to other medical issues makes containment harder, and sometimes I've worked out why certain things get to me. But I've never gone more than two or three months without at least one of these nasty and shameful little outbreaks of being a two year old.

Since I realised what they might be, I've become more systematic about trying to address the meltdowns - moving away from things that make me feel that way, telling myself what's going on (understanding it as a meltdown seems to help me forgive myself for it). But it's when I'm a) feeling ill for other reasons or am tired, and b) I am annoyed by a memory in my head, not something in front of me, that they're hardest/ impossible to resist.
would be interested in hearing what other people do about meltdowns.

Athenaviolet · 25/07/2015 22:07

Yes I only realised in the last few months that what I'd been having on and off my whole life were called meltdowns.

I thought I just had a volatile temper/high anxiety.

If I look back on friendships I've had I think a disproportionate number of them were also aspies too.

LeChien · 26/07/2015 09:28

I'm not sure if I have meltdowns, but I have times when I have to get out of a situation at all costs, I will also blow up at the dc because their demands have created anxiety and my head feels weird.

Allofaflumble · 26/07/2015 12:37

I am now recognizing that my "crazy" incidents were meltdowns. Also that I have shutdowns where I can barely speak and feel closed and completely shut off from the world.

My son (undiagnosed as yet) feels the same and punches his head to try to get rid of the *## badness? I can think of no appropriate word for the feeling.

I can recall a couple of times banging my head against the kitchen cupboards to rid myself of the feeling.

I used to wonder at my diagnoses of depression as I knew that nothing had changed to cause it. It was inside my head, had always been there and will always be there.

Knowing now I have Aspergers helps somewhat to recognise. "Ah that's what is happening".

Allofaflumble · 26/07/2015 12:49

Apart from Snap, I could not understand the rules of card games. When I have, in the past, socialised with a partner, and someone suggested a game of cards, I would freak inside.

Anyone else had this, not understanding rules of games?

PolterGoose · 26/07/2015 13:59

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Gumblebee · 26/07/2015 14:22

Since I got that piece of paper yesterday morning, everything I do I'm thinking, "Is this an autism thing? Does this mean it's true?" Blush

e.g. yesterday, I was going round Sainsbury's with my headphones on and loud music as usual, and while looking at a kids' lunch bag realised someone was patiently waiting for me to move. I jumped, said sorry, and stepped backwards into someone else, apologised again, fell over, realised I was still holding the lunch bag, attempted seven or eight times to replace it on the hook, failed, put down my basket, used both hands to complete the manoeuvre, realised a small child in a pram was staring at me, saw its face crumple, grinned and waved at it to cheer it up, was surprised by the parent smiling at me too, tripped up while turning round then went to another aisle to recover. Hmm

Or today - I decided to have some toast for lunch. I got the butter out, forgot to get a plate, then halfway through toasting remembered, and took it into the living room as I thought it would be good to make sure the table was ready. That process interrupted turning the slices over and although I thought I had, I hadn't, so they burnt, I turned the grill off, scraped the burnt sides, turned them over (including the crusts for DP which I don't eat), and waited for the other side to toast. Which they didn't, because the grill was off. A while later I realised my mistake, turned the grill back on, then when they were done I realised I'd put the plate in the living room so burnt my hands carrying the hot toast through. The whole thing took three tines as long as it should've done, but normally I would put it down to my general ineptitude and lack of common sense and concentration.

Has anyone else found themselves reevaluating everything they do as a potential ASD thing? DP has been doing knowing glances at me a dozen times a day, too - every time I shudder at the thought of wet wood or suddenly decide a cuddle has to be over NOW or complain I don't understand what is meant by "rigid thinking" as a concept (how can a thought be rigid) or pace up and down the garden or sing to myself. It feels like nothing about me is allowed to just be "me" at the moment!

Allofaflumble · 26/07/2015 15:03

Gumble yes I can identify a lot with your post.. I find myself often walking into people. Say sorry a lot! I wander around having started to do something, notice something else, get distracted, do another go thing, get distracted again, and yes the toast/saucepan has burnt.

Gumblebee · 26/07/2015 15:17

God forbid we have to heat beans at the same time... Grin

CrohnicallyAspie · 26/07/2015 15:35

polter me too, I also noticed recently that I always have to be in control of the game. With monopoly I have to be the banker, I move other people's pieces, that sort of thing. Mainly because I'm just so much quicker and more accurate than anyone else! When I play with my niece, she rolls the dice, sees its a six and a four, counts on her fingers, works out its 10, then painstakingly moves her piece one, two, three, four... whereas I can instantly see the moment the dice land which square she should land on. I'm working on it though!

CrohnicallyAspie · 26/07/2015 15:36

Working on not taking over, I mean.

LeChien · 26/07/2015 15:48

I'm the same with games, we have a board game ban in our family as we all want to be in control and it ends up with near bloodshed!
Also can't take in verbal instructions at all, I'm working on dd learning to write down when and where she wants to go out and for how long, because when she tells me my head goes panicky and tight and I don't hear what she's saying properly.

We've been on a spontaneous trip out this afternoon, which meant panicky feeling until I'd been to get lunchy stuff and we got there and all enjoyed it, then ds2 fell to pieces on the way back, called us all rude names and I'm back to the tight head feeling, trying to mn and play mindless iPad games to shake it off!

PolterGoose · 26/07/2015 16:08

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LeChien · 26/07/2015 16:54

Thank you Polter, it weirdly feels like a big deal, even though it was only local, as I've avoided doing anything out of my comfort zone for a while now. Once I got my head round it it was good to be out.

CrohnicallyAspie · 26/07/2015 18:42

I can take in verbal instructions... but only if I'm in the right frame of mind and the environment is free from distractions. If there's background noise or I can see something interesting happening or I'm not 'ready' to listen then I can't. A visual prompt such as slide helps, as then instead of being distracted by seeing something different I can concentrate on the visual that 'matches' the audio. This is one reason why I stare at people's mouths when they talk- the rest of people's faces can do different things but their lips match what they are saying.

Which reminds me, I've been meaning to ask about this for a while. I vaguely know a man who I think has had a stroke or similar- one side of his mouth droops very noticeably. As I just said, I tend to stare at people's mouths. I'm concerned that this may make the man uncomfortable as he may think I'm staring specifically at his mouth because of the droop. But if I try not to 'stare' I end up looking away completely while he talks, I can't keep more than fleeting eye contact (even if I'm not looking directly in people's eyes, I struggle to look at any of the upper part of the face). And I'm worried that purposely looking away could also be seen as rude. What would you guys do?

CrohnicallyAspie · 26/07/2015 18:48

Another question related to taking in verbal information- does anyone else find that when they are tired or overloaded they can't seem to split speech into individual words?

So instead of hearing 'I'm going to the cinema to watch a film tomorrow' they hear something like 'I'm going tooth a see nim at what cha film to morrow'. Sometimes I can mentally 'rewind' and reprocess the words correctly (especially if there's another clue to help) but sometimes I just can't make it make sense and end up having to have it repeated several times till I get it.

Gumblebee · 26/07/2015 18:59

Lots of mental rewinding for me, too. If I'm tired or concentrating on something else or there's a lot of distractions, my buffer is shortened and I can't rewind far enough to get the sense of it, though.

PolterGoose · 26/07/2015 19:01

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PolterGoose · 26/07/2015 19:02

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CrohnicallyAspie · 26/07/2015 19:46

polter I see him sometimes at an activity we do with our toddlers, so whenever possible I look at his toddler even if I'm talking to him but I was worried that might seem rude/odd, especially if he notices I look at other people but not him. Once the activity has started it's not too bad because I'm focused on DD and the instructor, it's just the chatting to each other while we wait for it to start and when we tidy up after. (Am I overthinking things again? At the most I see this guy for an hour once a week!)

That's a good point about your hearing, I suffered many ear infections as a child/teenager (though never a burst eardrum to my knowledge) and I'm prone to mild hearing loss after a cold, virus, swimming etc. Although mild, the hearing loss is mainly in the high frequency sounds which will affect the hearing of speech sounds more than environmental sounds. So although I don't really notice it, there is a chance that hearing loss is affecting my perception of speech, and it may be the same for you. I do admit to getting distracted easily too though!

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