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

(721 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!

HanSolo Tue 04-Feb-14 00:27:44

<Shuffles in and says 'Hullo'>
I probably have AS. I score 44-47 on the baron-cohen test, dependent on how honest I'm being.
I only came to see this when we started to investigate my eldest's issues.

However, I had a rather abusive traumatic childhood, and I am wondering how many of these traits could be put down to BPD (borderline personality, not bi-polar) and PTSD rather than AS?
I think for me, even though a formal diagnosis could be very helpful, and foster understanding it would be extremely difficult for a professional to unpick which parts are developmental disorder and which parts are mental/emotional health disorder. I also do not think I could survive the trauma of unpacking my past from its box.

WinterBranches Tue 04-Feb-14 00:48:29

OxfordBags your way of speaking sounds like me when I was younger and less aware of my ability to self-censor!

Many years I was intrigued by Asperger's being an explanation for some of my Father's passivity and his strong discomfort in groups of people, but the descriptions of lack of empathy just didn't ring true. He was a kind and a good judge of people.

As for myself, I was rather a mini-professor type as a child and socially terrified but I decided some of my family were just high-strung types. However in the next generation there has been a severely autistic child within the wider family and some more quirky kids.

I now see my Father as being less affected than his sibling whom I thought was socially successful, despite being horrifically blunt! As for me I think I'm fine but my DH did say he felt that the character Saga on the Bridge was a bit like me. He was joking - but the central roles were a cartoonish reflection of our differing styles.

Have spotted Borka's link. Thanks Oxford for an interesting thread.

RafaIsTheKingOfClay Tue 04-Feb-14 01:31:50

Thanks for this thread, Oxford.

Hans that is interesting about unpicking the mental health/developmental disorder issues. I've spent the last 10 years, since I was 21 with chronic recurrent, treatment resistant depression. Often severe enough to stop me functioning. Not unusual in my family, several of my family members have similar. I also know that it's not that uncommon in undiagnosed women with autism.

My own autistic traits aside, I can't help feeling that something else is going on besides 'depression'. Whether in my case that is an ASD or not I don't know. One of my family members has recently been 'rediagnosed' with bi-polar II disorder rather than recurrent depression. Their psychologist seems to think a number of our family members may have the same given our larger family history.

I'd like to sit with a psychologist and try and pick apart what might be going on and which bits of my issues come from where. I can't really see that happening though given the state of MH services round here.

HanSolo Tue 04-Feb-14 01:50:25

Hi rafa. I had chronic depression for about 15 years, from age 16 or so. All my family (unsurprisingly) have MH issues. My mother and sister have bi-polar diagnoses, but I'm pretty certain they both have AS too tbh. Every single member of my immediate family has made numerous, repeated suicide attempts; I'm sure there's an aphorism about Darwinism somewhere in there!

Jacksterbear Tue 04-Feb-14 12:41:23

Hello. I started to question my own "profile" recently in the context of trying to understand my DS (particularly after being given conflicting opinions re ASD, and the view of the person who did dx him that his presentation was in some ways "subtle", not immediately apparent, and that similar ASD presentations were often found in girls).

A lot of what I've read about women and ASD jumps out at me as describing me. I think I have lots of sensory issues and I know I have huge amounts of social anxiety (eg obsessively replaying things I've said in my mind to try to see whether I've said the wrong thing / offended someone / embarrassed myself), find it hard to cope with demands, unexpected events and transitions, am terrified of criticism and confrontation, am very black and white and inflexible in my thinking. I have also suffered from depression on and off for years.

However I cope ok with life and am sure that to everyone in the outside world I seem completely "normal". The trouble is I now feel as though I've lost faith slightly in my own ability to see what is "typical" and what isn't! What if my "normal" is everyone else's "atypical"?!

Does anyone have a link to the tests one can take that have been referred to up thread?

Jacksterbear Tue 04-Feb-14 12:48:10

Ok ignore that last request - I found the test and scored 28 - not that high, right?

Grockle Tue 04-Feb-14 12:59:06

AQ test here

There is one on the channel 4 website too but I think it's the same.

I think 32 is the score for Aspergers?

I know I have some significant Aspergers traits but, generally, I function quite well. People say I'm quirky (like certain numbers - the volume must be on an even number or multiple of 5, socks must be in pairs, biscuits have to be eaten the right way up) and, although I don't like social situations, I can manage chit chat for a while. You learn to fit in as best you can. I've never thought to ask for an assessment because I don't know what the advantage would be?

Meglet - do you details of the place in Southampton? That's my neck of the woods.

Thank you for starting this thread.

WinterBranches Tue 04-Feb-14 13:22:57

I scored 32.

I have a lot of learned behaviour from my Mum which is sociable, I can brazen it out for short periods and when my children were small I could see the need to socialise for their sake. I grew up in a small community and learned the social rules there but I'm not good in other environments. I would describe myself as an intermittent social phobic. The person who did label me as odd in my childhood and teens was my Mum - then I learned how to edit myself and be acceptable to her.

I wouldn't say I was quirky but then I did tell my 8 year old this week that I really liked the number 75. I can only imagine my mother's face:hmm, I'm guessing.

wibbleweed Tue 04-Feb-14 13:44:51

Great to see this thread - can I join you?

Both my sons have been diagnosed with AS over the last 2 years and seeing what my eldest (almost 10) is going through at the moment and thinking back to my own childhood and how I am now has made me think I also have AS (oh yes, and my AQ is 44...).

I was always described as someone who 'doesn't mix', in fact, my parents sent me to boarding school to help with this. Not sure if it did - I was horrifically bullied, but also did very well academically (oxbridge, PhD etc) and somehow managed to survive. I always found socialising difficult - virtually impossible without huge amounts of alcohol, which more often than not ended up in some kind of 'spectacle' - as I wasn't able to stop. Now that I've got kids, and not much of a social life any more (due in part to their SN), I find it very difficult to go on a 'night out' - usually sit in a corner hoping it isn't long till hometime...I'm still able to chat to people on a one to one basis, but can go overboard and talk non-stop about random rubbish if it's not someone I know really well.

I've always had some quirky traits/abilities e.g. photographic memory for tube map (bit of a party trick that one...ahem...). And I hate people getting too close to me.

That's enough. Think you get the picture!

WWx

Grockle Tue 04-Feb-14 13:51:02

Winterbranches... 75 Is a good number wink

Mollyweasley Tue 04-Feb-14 18:42:28

Hi! Great thread. I was diagnosed privatly last year with AS and ADD following my son's diagnosis. I've been reading a lot for the last 2 years on ASD both general reading and on female with AS. I think the problem comes from the fact that Hans Aspergers did his research mainly on male. However female are naturally better at socialising than men so some of the items on the various questionnaires are going to be irrelevant. My understanding is that the main criteria for diagnosis is the triad of impairment: There should be an impairment in social interaction, social communication and social imagination (not creativity type imagination which we tend to be pretty proficient in).This can be used both for boys and girls but it needs a really experienced and trained eye to spot it in girls because we are so good at hiding it. I've kept the news of my diagnosis to my close friends (very little of them wink) and family and I think a lot of people would be really surprised if their knew but then would realise that it explains a lot of my social inconsistencies.
What makes it even harder to diagnosed is that what the psychologist has to see is what we don't see: I think I knew that something was not right but I didn't know what it was.
In a nutshell this is what I think: we just beat to a different drum but we try to fit in so hard. Because we tend to be clever we know something is not right which lead to the "what is wrong with me". I personally was completely unaware of my needs which lead to mini-breakdown all of my life and living with constant stress never daring to relax. Life is better after diagnosis at least I understand and I am learning to relax.

PolterGoose Tue 04-Feb-14 19:15:23

wibble that's interesting about the social thing, I look back on my teens and twenties, I used to go out a lot, drinking and recreational drugs, I was always the daring one, the 'bad influence'. It gave an appearance of sociability, it was all false though, I haven't been out socially except for having coffee with someone, since before ds was born, the idea of a night out just makes me queasy now.

And all those things that my mother used to mock, now I realise I have quite significant sensory difficulties, I wasn't being awkward or silly, I really do feel those things more.

School was awful, I never fitted. Didn't achieve. Didn't have a proper friend until I was 13 and don't have any RL close friends now. The only social contact I have outside of work is on here or with other MN SN board users (who are all lovely) I just cannot maintain friendships at all.

Bizarrely my job/profession requires me to carry an extremely diverse caseload and be adaptive and responsive to very varying needs, I've been praised lots for how well I do this confused and I get on well with colleagues, I guess I'm masking at work because it absolutely exhausts me, although I feel 'me' with my clients.

I am feeling quite maudlin today.

Grockle Tue 04-Feb-14 20:34:06

How do you find somewhere to diagnose you privately? And how much is am assessment likely to cost?

I function pretty well but it's exhausting.

PolterGoose Tue 04-Feb-14 21:12:12

Well I've had a very surprising day.

I have in the past mentioned my suspicion that I might have AS to my mum. She's a teacher, and has taught autistic children in the past. She was comparing me to a little boy who struggled so much with social interaction that he pretended to be a robot in order to cope sad and on the basis that I do not struggle anywhere near this much, was fairly dismissive of my concerns.

Fast forward to today and I was chatting to her about my work and said something about thinking my brain seeing things differently to most other people. She said that since I'd mentioned my worries about AS to her, she'd been thinking about herself and her brother (a noticeably socially awkward and inept person) and wouldn't be surprised if both she and he were also on the spectrum.

She identifies many of the same issues in herself as I do, things like the sensory overloads (especially with sounds), very high verbal and writing skills but extremely low facility with numbers, needing to study correct social behaviour and model it on others who are more successful…

<falls over>

Grockle Tue 04-Feb-14 22:24:54

What an insight, Buffy! DO you feel relieved?

I'm too scared to ask my family - I'm embarrassed. I know I'm socially inept & people think I'm rude (I really don't think I am - I try to speak nicely, be diplomatic but I think my tone or something must be wrong. I don't actually know but I go out of my way to not be rude & I seem to fail from time to time sad)

I've spent all night Googling private clinics/ drs but to no avail.

Actually, that's something that I can't do... I can't Google effectively. if it's one word, I'm fine but I often have to ask other people to Google for me because I just don't think the same way google expects me to so I cannot find information that other people can confused

Grockle I don't know really. Sometimes I think that having AS would explain lots of things that I experience now and I remember from the past (for example, I was telling DH about several times when I was younger of being in a purely social situation, no work or anything to discuss, realising there was an awkward silence and wanting to speak but… just... not being able to, despite wanting to say something, anything, so much). Other times I think that while many of the AS characteristics resonate, especially the female ones, I've coped OK with life thus far and feel a bit ashamed of thinking of myself as 'special' in my feelings of not really fitting in. blush.

But, I have deployed my google skills for you on the topic of private diagnosis. There seems to be mixed feelings about it, according to the info I found. The National Autistic Society says:

"Our position is that adults may benefit from a private diagnosis, especially where this is something they want to obtain to understand challenges or difficulties they may face or to help explore concerns they may have had through life.

However, beyond the financial implications, this is tempered for people who need to access important support services through social services and the NHS. The reality is that there isn't any guarantee that the NHS or social services would recognise a private diagnosis and for this reason we'd always encourage people to also explore diagnosis through the NHS."

I did also find some individual clinical psychologists with websites offering private diagnosis, but they were just random websites…

Hope that's helpful?

CrabbyWinterBottom Tue 04-Feb-14 23:38:11

Hello, just marking my place to come back and have a proper read tomorrow. Since DD was disguised with AS I've realised more and more how many traits i have too. If I'm not on the spectrum then I'm certainly near to it, I think.

Mollyweasley Wed 05-Feb-14 10:30:18

Grockle The private assessment cost me £950. I researched it and believe it is a good price. It is very hard to find a good psychologist. I would make sure he/she is a registered chartered psychologist try using this www.bps.org.uk/bpslegacy/dcp and that he/she has diagnosed women on the spectrum in the past (word of mouth is better but not always possible). I also think that the Autism Research Centre in Cambridge take referral from GPs and run an assessment on adults for free. The Lorna Wing centre I think also take referral from GPs. If I had to do this again and didn't know where to start I would contact the Lorna Wing centre and explain the situation to them.

I too function very well but find social situation very exhausting. The other day I had a 2 sentences conversation with somebody at the school gate. It took me till lunch time to stop worrying about what I had said. By then I was exhausted. It is the constant thinking that I find exhausting.

I found this academic paper, which I thought might be of interest?

In the discussion section, it says:

"The RAADS-R was designed to assist clinicians in diagnosing adults (18+) with suspected ASD. It is designed to be administered by clinicians in a clinical setting. It is not intended to be a mail in or an online screening instrument. The questions are designed for individuals with average IQ and above. This is a population with mild or subclinical ASD. These individuals often escape diagnosis."

And

"a RAADS-R score of 65 or higher is consistent with a diagnosis of ASD"

I answered the questionnaire in the appendix and using the scoring, calculated my score at 142. Would be interested to hear if anyone else has heard of or used this test?

PolterGoose Thu 06-Feb-14 17:16:02

166

PolterGoose Thu 06-Feb-14 17:17:07

I've never heard of that test, and it would help to see more research on it, but it might be a useful one to take to a GP when requesting referral for assessment maybe?

One of the authors is supervising the PhD of the blogger to whom the OP linked.

From what I can tell (and it's not anywhere near my discipline, let alone my area of expertise) it is a relatively new instrument designed for clinicians to detect AS / ASD in adults. The first few paragraphs of the paper I link below make this clear.

This looks to be the first paper published about it, in 2008.

Polter the relationship between our two scores on this test would make sense, given my 39 and your 45 on the AQT. I'm thinking the two tests tell a similar story...

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