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Support thread for women who suspect or know they have ASD traits or are on the spectrum

(970 Posts)
OxfordBags Mon 03-Feb-14 20:49:10

Hello, all! As the title says, I hope this can be a support thread for those of us who suspect or know we have some (or many) Aspergic traits; where we can share experiences, stories, problems, worries, knowledge and info, and hopefully benefit and help each other too.

I found a great link a while ago that is very comprehensive in its description of how Asperger's presents in women and how women experience it. Some of it is strikingly different from the male model and how most people perceive Asperger's. Here: ASD in women

I truly believe two things: 1) that ASD in females is woefully misunderstood and under-diagnosed and 2) that our current understanding and the definition of the AS Spectrum is, in itself, rather ASD in its rigidity, and that there is an actual spectrum of traits much broader and more nuanced than the current model, and that there are a hell of a lot of people struggling with some very typical ASD traits, who nevertheless do not have all the traits required to fulfil a formal diagnosis of having Asperger's or High-Functioning Autism.

So, with that rather typically ASD-style long-winded and unnecessarily detailed intro out of the way, let's chat!

Thanks for starting this thread. I've spent today with a difficult to describe feeling. Unsettled and sad?

If I can ask for what I'd really like from this thread, it would be to compare experiences with others. Reading the various information that's available on female aspergers traits seems to be bringing up quite a few bad memories. My problem is that either I am a self-indulgent person with poor social skills who would like to validate a feeling of 'difference' that is actually not really very different or special. Or I am a person who has always had aspergers but who has developed very good coping strategies.

So talking about the female profile and recalling past experiences would be very helpful. As would 'tough love' if it's needed smile. Happy to listen to whatever others need someone to listen to.

Meglet Mon 03-Feb-14 21:15:25

That'll be me then smile. In short, it only became clear I had ASD tendencies when I was in my late 20's. 10yrs on my sister is working in mental health and pushed for me to get an assessment.

However, the woman doing it was hopeless and not geared up to recognise ASD in grown women. I could tick all the boxes and scored high on paper, and was text-book ASD as a girl and teen. But she said she couldn't give me a diagnosis as an adult because I was capable of making eye contact / hand gesture etc. And she helpfully told me I have severe anxiety and depression...(No shit sherlock).... Which are textbook signs of hiding my ASD all these years <head desk>.

Anyway, I've been given the details of a female friendly ASD unit in southampton so I should be seeing them eventually.

PolterGoose Mon 03-Feb-14 21:18:43

Hello smile I have a 10yo ds with AS and all that reading made me think about myself, I score 45 on the AQ. I've seen occupational health at work who advised me to see my GP for referral, but here you get triaged through the mental health team and I know I don't have significant enough difficulties (to them) to warrant assessment. I may go private at some stage. The OH doctor was amazing and her report and recommendations referred to the Equality Act and that she felt my needs required reasonable adjustments.

I disagree with Oxford's point 2, the diagnostic criteria should not be broader, I already struggle with people's perceptions of AS as mild autism, enabling people with 'some traits' to get a dx would not be a good thing at all.

PolterGoose that puts my score of 39 into perspective! I've never "known" anyone get higher than that smile.

I think the 'significant enough' difficulties is the crux of the problem, isn't it? People get to adulthood having developed sufficient coping strategies to, well, cope. So they are considered to be coping. But coping is hard work.

OxfordBags Mon 03-Feb-14 21:30:23

Hurray, people are here!

Polter, I don't think I explained my point very well, I think the criteria of what ASD constitutes is very broad, I just mean that there's this rigid 'you either have it or you don't' attitude going on, as though there is only ASD which fulfills all or most diagnostic criteria OR there's totally NT - and this thread is for women who know that that is just not the case. I think there should be some sort of extra diagnosis that recognises that some people have some Aspergic traits, and struggle with the problems and issues involved with them (and require the same help for them), as people who are fully on the spectrum.

I suppose the question is that if the diagnostic criteria should be kept stringent, where does that leave someone who knows that they struggle with a portion of what would constitute a diagnosis?

OxfordBags Mon 03-Feb-14 21:38:15

As I said on that other thread, I score highly for all aspects of ASD except I have a higher than average for NT score for Theory of Mind and empathy. So I cannot be diagnosed as having ASD, as these are essential criteria, even though the people who I saw said that I sored higher on many of the criteria than people with an official diagnosis. So I am 'officially' NT... except I am quite clearly not. This is where the diagnosis process fails people and is patently not broad enough.

The more research I do, the more it becomes very obvious that the diagnostic criteria totally fail most women. The people I saw also said that many ASD women are actually pretty empathic and sensitive, but they have to stick to the male model of criteria, which states that you can't have ASD if you have adequate or even good empathy. They found the limitations frustrating also, and knew that they were having to give women a flawed diagnosis as a result.

OxfordBags Mon 03-Feb-14 21:39:24

Should read 'give some women a flawed diagnosis'.

Do you have links that can explain how theory of mind and empathy etc are assessed?

If you asked me based on the dictionary definitions of those terms, I'd say I am not empathetic in the sense of finding it easy to put myself in someone else's shoes and feel what they might be feeling. But I do understand that other people react to things with feelings and I can make a reasonable assessment of what that feeling might be, using logic. I think I quite often get it wrong though, and I never seem to be able to do it actually in the moment of the social situation. Only afterwards, I think oh, perhaps x felt this way, that's why they did y.

PolterGoose Mon 03-Feb-14 21:42:41

For me Oxford, and I do get where you're coming from, that's just a bit too close to <head tilt> "well, we are all on the spectrum" which I have huge issues with.

What needs addressing is a proper exploration of how women in particular have developed coping skills and cognitive strategies to 'pass as NT', so it's not that we're not on the spectrum because we mask well (or not so well wink) it's that we need diagnosticians who are skilled in the nuance and see beyond the superficial. It's a huge struggle with getting children dx'ed too, and not just girls, when parents make huge efforts to enable their children to cope with social demands which then bites them on the arse when professionals don't see beyond eg learned eye contact or whatever.

PolterGoose Mon 03-Feb-14 21:46:02

But theory of mind and empathy are not part of the formal diagnostic criteria are they? And both are contentious theoretically.

People with autism don't lack empathy, that's a huge myth.

There's some good critical stuff about on Baron-Cohen's ToM stuff too, many people with dx ASD dispute his proposition.

Polter do you mind me asking what reasonable adjustments your OH doctor thought might help? I ask because I too have been referred to OH about an issue that could well be explained by as (if I am right in my assumption that I might have this condition).

But I've been wondering whether it's worth pursuing anything official, whether there would actually be anything they could do. Work already supported me with a bullying problem (well sort of, they didn't say go away it's probably six of one… anyway) and are being reasonably tolerant of my struggles since.

…But, with reading and learning about the traits, perhaps that's enough to make my own reasonable adjustments?

Hence my asking.

autumnsmum Mon 03-Feb-14 21:48:06

Great thread and please don't be offended not all girls learn sociability my dd who is four and attends a specialist autism school hasn't . I don't want to use the phrase severe autism for her because I wouldn't want to define that but I think for a girl she presents obviously sorry for hijack

PolterGoose Mon 03-Feb-14 21:50:40

Good blog critiquing ToM

Another good blog explaining the spectrum, but some really good other posts on there too.

Hi. I know i have asd traits. I scored 35 on the AQ when I did it. Since looking into ds and leading up to his diagnosis it really wouldn't surprise me if I did have asd too!

PolterGoose Mon 03-Feb-14 21:55:15

Buffy if I said the adjustments it would be very identifying. I'll PM you.

Well said autumn an important point. At the end of the day autism is autism, there isn't a male or female variant, just a range of different presentations. It doesn't do anyone any favours to say boys/men present like this and girls/women present like that.

Borka Mon 03-Feb-14 22:16:07

There's also the Broader Autism Phenotype, which refers to people who have autistic-type traits but to a much lesser degree than people who actually have ASD.

I think it's mainly been looked at in terms of family members of those who have autism, but it ties in with some of what you're saying, Oxford

This explains the connection between ASD and BAP quite well.

OxfordBags Mon 03-Feb-14 22:23:15

I don't agree with all of that, Polter. Many women with ASD do present very differently from men, even though the reasons for that in many areas might be due to societal gender conditioning, as opposed to something actually innate. Women on the spectrum do present certain things in very different ways to men, and also has aspects that men don't, and vice versa. All the experts on ASD talk about how the diagnostic criteria lets women down. There isn't a variant for the sexes, and it is all a range of different presentations, yes, I agree there, BUT when it comes to diagnosing, and therfore getting help and understanding oneself better, and all that jazz, a very specific model is used that does not represent all the features, presentations, issues, etc., that all people, male or female, on the spectrum experience. This is the problem. If the criteria truly reflected all the presentations and aspects, then I would be v happy to not use male and female models to describe things.

I am very anti 'men are X, women are Y' type thinking, btw, this is not me coming from a position of rigid and conservative opinions on gender.

OxfordBags Mon 03-Feb-14 22:31:58

Borka, that's interesting stuff. To throw some more ideas into the mix, I am currently in therapy, and have discussed my ASD traits and experience with testing with my therapist. She made the very astute point that, having a father sho is pretty obviously on the spectrum, as well as having an officially diagnosed brother, I grew up with ASD traits being a totally normal way to be, feel, react, think, etc. (I mean 'normal' as in habitual, not a superior thing to ASD), AND I had to develop very b&w ways of explaining myself, acting, communicating, etc., etc., on order to desl eith them snd get througn to them, so are some of my traits truly neurological in origin, or things I developed in order to cope with my family, as a child? In other words, could some people have some sort of 'pseudo-ASD' due to certain circumstances? What would they be like in any situation, or what wascreated by certain issues and experiences, etc.?

OxfordBags Mon 03-Feb-14 22:35:44

Autumn, I have made it clear that I am referring to how some females present, not all. My female cousin, who has been diagnosed as having Asperger's is very obvious, and pretty stereotypical (ie, the way a writer would create an ASD character for a tv show based on the most common ideas about ASD).

PolterGoose Mon 03-Feb-14 22:35:47

I don't think I disagree with you Oxford smile and certainly, gender crap makes a huge difference, but I do think boys/men with more subtle presentations get missed in exactly the same way. Like I tried to say above (21.42) many diagnosticians do miss the subtle, hidden stuff, they do need better awareness and knowledge.

PolterGoose Mon 03-Feb-14 22:47:57

I forgot to say thank you to Oxford for starting this thread flowers

OxfordBags Tue 04-Feb-14 00:10:17

Thank you, and I do agree that many boys and men get the wrong diagnosis too. It's why I think there should be some sort of sub-classifications. I don't like all that 'we're all on the spectrum' stuff either, but there's a lot of people, male and female, who could be helped, even if that means that they stop believing they are a loser or a weirdo or whatever, if they knew that they had some as ASD traits, and the implications of that. Or perhaps it just needs to be more widely understood that some people do have ASD traits but aren't fully categorised as on the spectrum.

I wish I had known at a younger age that my very eccentric way of speaking, full of jokes, daft accents, pop culture references, and strange asides, and also the way in which I can't stop myself taking on the words, mannerisms and so on, of whoever I'm talking to (I'm totally one of those people who starts speaking with a French accent if I talk to a French person!), which annoys a lot of people, is actually what's known as Social Echolalia, and not me just being some sort of weirdo, as far too many people have called me for it.

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