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

[EauRouge]

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

Please come and join in!

No and you shouldn't have to.

I think people think that it's an excuse to be fussy and that what it actually means is that you are a spoilt brat. Of COURSE that's not the case but it seems as though there's a sort of acceptance among some people about being annoyed by having to make allowances for an adult with allergies, sensory issues, ASD etc in a way that they would never express annoyance (at least outwardly) for having to make allowances for an adult who was blind or unable to walk or similar.

I don't really understand it because it's not like it's that much effort to text instead of call, it really makes no difference to them at all. Although I do think sometimes in families there can be one person who likes things to revolve around them at all times and so they push against somebody else needing special treatment because THEY are the ones who believe they need special treatment, even though actually they just want the attention. Sad really. My MIL and one of my SIL is a bit like this, although mostly it's MIL. She's said some awful things in the past just to get the focus back onto her if people are concerned about somebody else or someone is having an issue. Plays total favourites with the grandchildren (the one biological girl child is the princess while the others, variously adopted, stepchildren, children from "broken marriages" or even just living far away are all naughty, delinquent, horrible, or don't count. Stupid woman. Wonders why we live far away.)

I think my SIL is that 'one person'. Like I said, she is/has been ill. Which obviously means she does need a lot of special attention at the moment, and I'm pretty sure she's suffering mental health problems as a result of her ill health. But everything has to revolve around her at the moment and if she doesn't agree with something or we ask her to do something she doesn't want to do it's 'I don't need this stress at the moment, I'm ill'. I'm being as understanding as I can, but I've just run out of patience.

I think her issue with the texting wasn't so much that I was texting instead of calling, but that I seemed to be texting and asking questions rather a lot. Because I'd have a full conversation via text, and ask questions to clarify points I wasn't sure of, so we'd exchange maybe 5 or 6 texts over the course of an evening instead of a 10-15 minute phone call.

Hi all. I am exploring the Aspie thing. DD was picked up as probable Aspie a year ago. We're having a trial getting to see anyone. Long story but a new Senco is hopefully going to sort it :) As with so many of you it has raised stuff for me. Always odd, on the fringe, depressed, anxious, bright, geeky, tricky relationships, you know the drill.
I have to write a list for my lovely GP who is a woman who gets female Aspies are out there. I just did the test that was top of the link and scored 149.

So what are the killer things. I don't want a list of a hundred things like being utterly crap at riding a bike!

Hello, Giddy :)

Have you had a look at the Tania Marshall list? It's long but it's divided up into sections.

Thanks Eau. I've just been through it with dh and there's a lot of stuff that fits completely it does raise one big question. I don't know what's normal. I don't know what someone NT would say. DH is no use because we think he might be on the spectrum too or have something else that makes him a good foil for me but not NT. My family are a bit 'different' too. We all get on fabulously but we ain't normal :)
All the statements are subjective so how do I know?

I do know but the fear of getting it wrong and being an idiot are making it impossible.

There is a missing 'whilst' in the first line

Hmm. So they told me to come back next week when hopefully my insurance card will have arrived. Not sure if I'm relieved or annoyed.

Giddy if you want and it's not too personal you could post the list here and we could have a look for you? I mean you might get the same problem on this thread but sometimes when folk are further down the line of theory or work in the field it's easier to pick out the differences.

De-lurking because I seem to be back in the club... asking GP for a referral later today (eek!)

Also really pissed off at the comments about BPD - not annoyed at anyone here, just the stupid psychs who don't look beyond ticky boxes. I mean, using a long relationship as evidence of ASD rather than BPD - it's not as if people with Aspergers are known for relationships, is it? And if you're below a certain age the men don't seem to have grown up yet and will act like a different person to attract you, following their cock basically. An ASD would make it harder to be discerning, surely? And if you have only one or two close friends, (and the rest are more like aquaintances (relatively) because they're surrounded by people they've known years/since school), then you're more susceptible if they move away or something. Which happens. Or people have children, or something that changes things. Do psychs live in the past? Where people got a job for life and stay put in their hometown? I'd love to be surrounded by a consistent, caring community, and the fact that I'm not is not because I'm so dreadful! hopefully

Work's the same - if you keep getting fired when you get overloaded, or are getting depressed... then obviously you'll have a lot of jobs!

When I was 18, I had a seven year plan. Work interspersed with travelling for a few years, then uni to study something I'd always wanted to. I'd carefully made a list of the places I wanted to visit, worked out how long I'd need and split it into different trips, how much that would cost, the best time of year/route with the climate, how long it would take to save up, managed to save on min. wage... it wasn't random, ffs, but psych types treated it like it was. It took a few years longer than I'd hoped, due to my inability to hold down a job for long, but I got there (and it's the best thing I've ever done, for so many reasons). Sadly my previous dealings with the psych team meant my place at uni was withdrawn at the last minute, and later that year I broke down (life had been going well, but the previous years/pain caught up with me.) This time I decided to sort myself out before returning to work - that was 4.5 years ago. Now they think I'm lacking ambition and a hopeless case it's not worth bothering with. You can't win with them.

I'm scared my previous record with mental health sevices will go against me in assessment. The glimpses I've had of what's in my notes is such a warped version of reality - often blatent lies (eg. "Element said x thing" when I said no such thing and nothing to imply that, because it's not what I think!)

I want to go back to my home planet.

Oh, I agree with you totally @ element - I have a huge issue with the way some psychs (many, in my experience) either make or rule out all sorts of diagnoses.

I'm sorry about the BDP thing. I made a previous comment on it re: long relationships, but it was what a psychologist said to me, not my opinion, iyswim.

Just an update on my situation. Its all happened really fast and I'm feeling quite weird! I only really had my lightbulb moment a few days ago and now i am convinced I am on the spectrum....it accounts for so much.

I'm nearly finished reading Rudy Simone's book and its pretty bloody obvious to me. I'm Aspie.

I've talked it through with my mum this morning and she thinks it makes so much sense. Havent broached it with DH yet.

I feel like I need to talk about this with other women with AS. I feel all sort of giddy, weirdly relieved but very isolated with this new knowledge.

Element, yes! I've been treated appallingly by the NHS. The psych nurse I saw also made stuff up (hello, fictional traumatic childhood) and I felt like I was being forced into the BPD box. I remember reading on a forum or blog somewhere that BPD was sometimes referred to as 'problem woman syndrome' because that's often what women are labelled with if the anxiety/depression treatments don't work. I'm not saying BPD isn't real, but it's definitely the next thing on the list of possible diagnoses.

I need to go the GP this week to get some valium (longhaul flight coming up soon) and I'm worried that there will be 'suicide risk' and other such crap on my notes.

Sounding, I'm really glad you've found your answer :) It is weird at first, I felt like I shouldn't really feel relieved about having Aspergers, but at the same time it's like everything becomes clear. I hope it goes well discussing it with your DH. If you look on the Musings of an Aspie blog (link in the OP) there are some really good posts about diagnosis and the emotions that come with it.

Thanks Eau

I agree with you about BPD, too. Again, I'm not saying it isn't a valid diagnosis for some, but my gut instinct told me (when it was bandied about for me) that it was an 'end of the line/desperation' diagnosis. Meds and therapy had had zero effect (in fact, made me worse) and after two years of this the psychiatrists had run out of ideas. BPD is a good catch-all diagnosis for people (especially women) who experience depression and anxiety and identity issues, I suppose.

At the time, when the psychologist who told me the stuff about long term relationships/functioning in everyday life meaning BPD wasnt appropriate, I just took it unquestioningly really, as it fitted with what I thought/felt about myself anyway (that I don't have BPD). I thought she was really switched on at the time, actually, as she had a few sessions with me and said 'look, I'm going to go back to the psychiatrist and I'm going to tell him what I am telling you: you do NOT have a personality disorder. You function way too well'. It was a relief, I suppose.

But ASC was never mentioned. Thats the let down. Never has been mentioned. Not even a hint at it, despite the fact I have an autistic child and a history of depression. I find that really bloody odd, in retrospect. I think MH professionals can be very blinkered and trapped inside their own specialism and their own diagnostic traditions.

Sorry to waffle on...but...

On the subject of difficulties with mental health professionals...I requested my medical notes last month (before the AS thing really started to come to the forefront of my mind), because I was thinking ahead to my psych review in May, and realised I couldnt properly recall the timeline for how things went when I started to get seriously depressed, what happened at which appointments etc.

I've got an appointment in a few weeks time to 'go through my notes' with my GP, which I was told to 'expect to take up to half an hour'. Anyone got any experience of this? Why do I need him to 'go through' the records with me? I was hoping they'd just hand them to me. Am I going to uncover some dark history I wasnt aware of or something?!

Sounding it sounds like you and I are both in the lightbulb arena. But I think it's really normal to feel relieved when you find out what's wrong with you, physically or mentally, because at least then you aren't in limbo any more.

Bertie I will post an edited version of my list. Taken as a whole it would be pretty identifying because it's quite a combination.

I was going to apologise in advance for being a bit hopeless at keeping up with things but I'm guessing you're all used to socially awkward

Right then. How does this sound? All thoughts welcome!

Freaky long term memory & bright
Work in tech
Have Anxiety and Depression plus IBD (Colitis)

Strong willed and obstinate over principles
Stickler for detail, getting things right, following rules etc

Very sensitive hearing. Rubbish balance and very clumsy. Don't like people close to me. Hated being cuddled even as a newborn.
Often need to cover eyes and ears to think hard
Can't bear restrictive clothing.
Hate the feel of makeup on my face or hair on my face
Repetitive movements, chewing lips, rubbing fingers, leg bouncing, rocking while standing
Can do eye contact with my children for ages. The less well I know someone the less comfortable I am with eye contact. I know I should do it but it's a struggle. It feels silly.

All the usual social stuff (tend to drink to get through it) and can't wait to escape home to my calm.
Bullied at school, never quite the same as the other girls.
Don't seem to have the light touch or frivolity that other women have
Very few close friendships and hate phoning people

Night owl and need things right to be able to sleep.
Needs routine and can't bear changes or things being 'wrong'.

Life totally arranged so I don't have to do the things I don't like
Slightly obsessive about my particular interests (and go on too much)

Prone to crying in stupid situations or stress but good in a crisis.
Addictive tendencies with smoking and alcohol. (mostly controlled!)
Potential hypermobility
Prefer to be at home as much as possible.

Hi. So I just found this thread, I read through some of the links at the start. A lot of the points on the Tania Marshall article, are familiar to me. And this is my RDOS. Apparently I scored NT 49/151 AS. Is it really as simple as going to the GP or will they laugh at me?

Hey Telephone that looks like my graph. Yours has a bit more in the bottom right sector than mine but it's similarly lacking on the left!

Similar to mine too! I got 153/200 Aspie score, 51/200 NT.

Telephone, hello and welcome. I did just that. Went to see a GP, with a list of my issues and she agreed to refer me, not so much because she was convinced I was Aspie but because she saw how important it was to me to try to find out.

Hi all I am keeping an eye on this thread but can't post from my iPad and the kids are always on the computer!
Bertie, I just wanted to say that I went through the same thing while waiting for an assessment between thinking I have ASD, ADD or nothing at all and just that I was a bit loopy! Turns out that I have both ASD and ADD. The thing is that some ASD strength masks the ADD negatives and vice et versa so it makes me a super masker! Also having both means I do not relate to everything that is said about ASD. For example I have an awful memory for fact unless it is one of my specialist subject, then I will remember the facts (but will forget once I move on to another interest).

Huh, that's interesting. I am pretty certain of the ADD for the minute though, even my RDOS graph thing was fairly symmetrical - there was no lean either to the NT or Aspie side.

Is flumble back from holiday yet? She asked for more stories of my DS. Well I had a funny one today. We were at the park and he's recently gained confidence in climbing things which was always too scary for him before. So he was getting on the roof of everything and popping up saying "Hey! Mummy hi! I see you!" So I was sort of smiling, waving and saying hi every now and again. When he was balancing on the edge of something I said "Be careful." and he replied "Don't worry. It's just like jumping off a cliff!" well I wasn't worried before...

Then on the way out of the park I held the gate for him but he decided to climb over the fence instead. I said "Don't do that, you're not a delinquent." And then followed a monologue from him about how a delinquent must be a person who never goes through any doors or gates and just climbs over them instead, and that's quite a good thing, and he likes being a delinquent, and that's okay, isn't it Mummy? And walked the next half of the way home while spinning in a circle with his arms outstretched.

But then we found a long jump course, so we decided to have a go at it, and he beat me! (I wonder where he gets this jumping randomly from topic to topic from...)

Just popping in to say that I still haven't heard from the Psych following my assessment earlier this month so none the wiser yet. Getting increasingly anxious about the whole thing.

BertieBotts I think the online assessment tools are problematic because of all the "Yes, but..." answers not allowed for. My graph says I'm neurotypical, yet I relate to most of the traits mentioned. (The big missing one is reading body language and facial cues - I'm v good at that... I just get overwhelmed and confused by what I'm picking up, because I feel like the person is emotionally manipulating me rather than saying it out loud. How do you respond to what you know is true but not what is being said?!) There's so many obscure things too, eg. being really affected/unable to think when hungry, that have bothered me and this seems to be the explanation.

Though it's not much of an explanation... the way psychiatry muddles things (within an air of competence and power, grr) really winds me up! I mean, so many AS traits seem to be trauma or stress related rather than inherant behaviours/traits. And the vastly different combination of traits between individuals make the label a vey broad umbrella. And none of it explains why! Sticking a label on it is no explanation! It's like saying "Ah, I'm diagnosing you with sore leg" - it doesn't tell you if it's broken/infected/bruised/muscle wastage/skeletal issues/etc. I have a feeling someone will tell me this an AS thing to say, though!

Really, really pissed off with mental health professionals not checking for AS. My last support person (before discharge) was an occupational therapist, ffs! Surely she knows about ASD's? And I must have cried "I want to go back to my home planet, where people make sense and are nice to each other" a hundred times! There's so many things I've said to them in almost the exact words that are written by Aspies - how could they not see? And - this takes the biscuit - every MH professional I have ever met wnats to know my family history etc., and I've said I have a sibling who clearly "has Aspergers or something", because I've needed to explain the family dynamic/other issues that arose. Oh, and my sibling was assessd for Autism as a child (late 80's) and they didn't diagnose anything! (With the wishy washy "they're their own person, everyone's unique"... this was a child with a typical AS presentation).

Sorry for moaning, I'm just mightily pissed off at the nightmares I've endured, the bullying from professionals, the cruelty... I mean, even if I don't have Aspergers, it wasn't ok! Just feel sad and alone and lost and don't want to keep going anymore. Dont want to have AS. Do like cuddles and would like one that never ends and the pain to stop.

Element I feel for you I really do, totally get what you are saying. At least on here you know you are among your own. (((hugs))). Moan away.

Best book I ever read about Autism is Women from Another Planet. There is one lady who describes that she feels like she was an egg that should not have been disturbed. I am sure it was a lot more indepth than that, but it really stuck out for me. Definitely recommend it.

On the back of Liane Willey's book it says "Dr Willey has a wonderful husband, three happy children, dedicated parents and an active social life. She also has Asperger's Syndrome like her youngest daughter". What a fortunate lady!!!! That is a million miles away from most of our experiences surely?

If anyone would like this book please pm me and I will send it to you. Maybe then pass it on when read?

Bertie loved the story about your little one - thank you.

So I'm back off hols and had a nice time, but glad to be back.

Glad your holiday went OK, fumble.

Well, I got my valium from the GP and tomorrow we are off. I still don't want to go and I feel like a bit of a bitch for not wanting to. I just can't wait for the whole thing to be over and to be back home :(

I have a question...

My GP has agreed to refer me for an assessment. He knows shockingly very little about it all so I think that helped - no prejudged idea of a 'typical male' presentation. Although he started googling it and I didn't bother to reign in the stimming & hand flapping as all the male-centric stuff came up... almost grabbed the keyboard from him too. He did let me google "women and aspergers" though.

Anyway, he wants me to get the list of female traits and cicrcle things/annotate it. He explained this wasn't for him, but as something to send as evidence of needing assessment. This is fine; I can do this. However, I'm worried that using, say, Tania Marshalls list, isn't adequate. I mean, it's not from an NHS website or a DSM website etc. The triad of impariments has me baffled... it's so hard to explain how I fit. But those lists of female traits I fit almost all of them! So will they look at it and say "Oh, another stupid BPDer who thinks she has AS from reading a blog", because it's not an official website? I'm also worried that the innacurate and effing judgemental stuff in my notes will go against me.

Any thoughts/advice? Is there a more 'official' website with a list of female traits, or a description of female presentation?

Thank you x