Our SN area is not a substitute for expert advice. While many Mumsnetters have a specialist knowledge of special needs, if they post here they are posting as members, not experts. There are, however, lots of organisations that can help - some suggestions are listed here. If you've come across an organisation that you've found helpful, please tell us. Go to Special needs chat, Parents with disabilities, SN teens, SN legal, SN education, SN children.

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

(985 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!

HoleySocksBatman Tue 15-Apr-14 21:30:23

Message withdrawn at poster's request.

Holey. I don't think you should tell the school yet. This information is your and should only be given to people who will do the right thing with it or when you need it as leverage. Neither apply right now with this school.

Norsemother Wed 16-Apr-14 03:39:40

Hi again. Not sure if this is going to end up where it is supposed to end up within the thread. In response to previous poster's question, I have done some tests online and always scored highly (where it says "you should further investigate... you rate highly... for AS... blah blah blah. From memory they said over 28 was probably ASD and I was usually 38 or so - don't know if they were all the same test on different websites or not, though). In terms of what DS thinks, I just tell him that if I went to his paed when I was a kid I would have probably been DXd with the same thing (except not ADHD) and I think he recognises my almost-meltdowns that I can usually control if I'm not under too much stress. It's poor DH that doesn't understand, even though he said yesterday he could certainly see DS's ASD in me. I am just relieved that we finally have help for DS, so school HAS to help him.

PolterGoose Wed 16-Apr-14 07:38:49

Star I really can't think of a reason not to tell people.

Norse hello smile how old's your ds? Mine is nearly 11 and he too sees me as 'a bit Aspergery', his words!

I had a chat with dp about getting assessed last night, because when he went to the GP he just got referred to do an anxiety group thing and got ADs. I don't think either of us would pass the NHS threshold for assessment because we've made so many adjustments to our own lives. I am getting closer to needing a dx for me.

Did anyone see Embarrassing Bodies last night? They had a feature on ASD and a young chap with AS, it was such a change seeing someone with AS on TV who could 'pass for NT', if that makes sense. They also had links to the AQ and also other screening tests:

MyMindChecker

I scored high for ASD, OCD and ADHD shock, moderate for depression, anxiety and dyspraxia, and low for dyslexia and addiction.

HoleySocksBatman Wed 16-Apr-14 07:40:08

Message withdrawn at poster's request.

Norsemother Wed 16-Apr-14 08:31:51

Hi PolterGoose,

My DS is 9. I knew since he was 2 he had ASD (went to school with a boy who had autism and was "low functioning" and I recognised a lot of traits). Paed at 7 years eventually said ADHD with "anxiety" and "immaturity" but he was an idiot. After a wasted year, found a great paed who said "I can certainly see AS" and I jumped for joy. It got to the stage where, for 2 weeks before second opinion, DS was saying "Mum do I have autism" and when I would say "Dr X says you don't" he would say "why? why don't I have autism" and he became so fixated on it it was ridiculous, so I think he was completely absolutely relieved to get DX because he already knew. Since about prep (age 5) he would "box" himself with certain other kids, and he would say things like "she's a 'silly' like me" and when I questioned him he'd elaborate that "she does silly things like I do". It was quite heartbreaking, because the "silly" things were really just ASD things he was being discriminated for.

Un/fortunately his ADHD made his behaviour very external. What I consider to be my meltdowns are usually internal, apart from ever year or so I seem to have an external one triggered by DH throwing out something of mine (I have a problem with hoarding, because every piece of paper seems important, and every single item has a memory attached to it - I know it, so I'm working on it, but it's HARD). DS tried anti-anx meds and they made his OCD terrible. One night when he was 8yo I had to literally drag him out of the bathroom because he was scrubbing the sink and wouldn't stop. I would have let him go, but it was 10:30pm on a school night smile

I've found many coping mechanisms myself, and I think that's why DS had such a late dx, because I instinctively knew what to do for him (but unfortunately that means missing out on early intervention some funding that could have done wonders for him when he was under 6.) Most "semi-professionals" we have met can't possibly understand why it took so long for our DX. But we'll get there - all of us. My 7 yo DS is "neurotypical" but has OCD traits that are how he deals with the rest of us. DH and I often joke about my neurotic tendencies, but I do get upset when he doesn't accommodate them as much as I think he should, but I must say, he has done wonders for me in that he has made me see that sometimes the world will not implode if I don't do x, y or z. Unfortunately, my lack of housework disturbs him (I've often just given up because it is such an impossible task, and although my Mum used to help me here and there, I don't get the same help I used to, and I have a lot of commitments with my University studies).

muminboots Fri 25-Apr-14 20:00:49

Hi everyone, I was searching for a thread like this because I just got a diagnosis of Aspergers this morning. Although it is what I was expecting, I am feeling a bit shellshocked and would appreciate chatting with others on the spectrum.

PolterGoose Fri 25-Apr-14 20:11:15

Hello mumin, as I'm sure you've seen, I don't have a dx, am very interested in others experiences of assessment though if you don't mind sharing.

muminboots Fri 25-Apr-14 20:36:30

Hi PolterGoose, my situation is a bit unusual because I live in Switzerland and I knew I'd never get a diagnosis here so I contacted a psychologist in Australia who's a specialist in female Aspergers and does assessments via Skype.

We spoke for a total of 4 hours, including doing an assessment questionnaire (the RAADS-R), and going through my childhood and developmental history too. She also got my husband to email her to get his input.

She was totally lovely, very unintimidating and gave me an official diagnosis. I'll have a follow up with her in a month or so. She talks to women all over the world, but it's not free - my assessment was around 440 AUSD, but well worth it, definitely.

Mollyweasley Sat 26-Apr-14 10:46:51

Welcome! I got a diagnosis of AS and ADD last year following the diagnosis of DS1. How are you?

muminboots Sat 26-Apr-14 11:47:39

Hi Molly! I've read that ADD often goes hand-in-hand with AS, which I guess is not surprising with the executive function stuff.

I woke up this morning feeling as though a huge weight had lifted off me. I hadn't realised just how much work I've been doing every day just trying to be like other people and now I feel like I can cut myself some slack. SO MUCH of my life now makes sense that didn't before! It's such a relief.

muminboots Sat 26-Apr-14 11:53:50

Oh I just looked at the link that OxfordBags put in the first post of the thread, and it's the website of the woman who diagnosed me, Tania Marshall grin

I'm not sure how much my diagnosis would be worth here if I wanted to get any kind of benefits or whatever, but that's ok with me, because I don't want it to affect my medical insurance either.

PolterGoose Sat 26-Apr-14 11:56:28

Thanks mumin, such an interesting way to get dx, glad it's helping you smile

Meglet Sat 26-Apr-14 12:02:28

I finally have my second opinion apt.

According to mum, who has grilled them about the procedure, the first apt is just a couple of hours then they make another one to go through your history in more detail.

The funny thing is that DD has her first pead apt a couple of days later. Ideally I'd like us both to end the year with a diagnosis, but that's probably being a little too optimistic.

HoleySocksBatman Sat 26-Apr-14 19:23:00

Message withdrawn at poster's request.

HoleySocksBatman Sat 26-Apr-14 19:24:01

Message withdrawn at poster's request.

Mollyweasley Sat 26-Apr-14 20:36:51

Glad to hear you are doing well mumin!

BeyondTheVirtualActivist Sat 26-Apr-14 22:35:59

AQ 149
FQ 29
EQ 4 (FOUR!? Wtaf?)

Spoke to my mum about my concerns about the boys. She said they didnt join in with any of the activities on holiday "but its okay, cause you were like that too" hmm I was initially worried about ds2, but have since discovered all these things that they both do that i've written off because i do them

HoleySocksBatman Sun 27-Apr-14 10:08:06

Message withdrawn at poster's request.

Ineedmorepatience Sun 27-Apr-14 14:38:06

Hi all, I thought I would pop in and mark my place on this thread.

I just did that RAADS-R test and scored 162 and I re did the AQ last week and scored 39.

Having just spent a week in the company of friends who have Asd running through their family I am even more convinced that I am probably on the spectrum.

I spoke to my mum about it again the other day but she so doesnt get it, my sister feels strongly that I have many traits, she has clear memories of my meltdowns in supermarkets over parents wishing to buy different brands of food or manufacturers changing packaging. And clothing is an issue and always has been.

I definitely have masking strategies which work but are fairly exhausting. One of my biggest problems is picking out conversations in noisy places, I absolutely cannot do it!! I suppose I should consider finding someone to run a DISCO by me grin I am owed a favour by a psychologist so maybe she will know someone.

muminboots Sun 27-Apr-14 17:08:53

My mother doesn't get it either - I was an only child so I guess she doesn't have much to compare it to. Also i think she is remembering my childhood with rose coloured spectacles hmm And of course she remembers me reading very early and spending a long time playing and sitting by myself as a very young child as good things rather than classic signs of a girl with aspergers!

My husband made me feel awful earlier by telling me it's not so bad to have Aspergers and listing all the things I could have which would be worse. He says he likes my weirdness which is nice I guess but he has no idea what it's like to be in my head.

My RAADS-R was 168 I think, and my AQ 43. What is the DISCO? I haven't heard of that one before.

HoleySocks yes it was Tania and she is so sweet. Her books are coming out soon so you all have to buy them. She is really passionate about her work. She's a single mum and while we were chatting on Skype her daughter was standing behind her waving to me grin

HoleySocksBatman Sun 27-Apr-14 17:13:10

Message withdrawn at poster's request.

HoleySocksBatman Sun 27-Apr-14 17:23:51

Message withdrawn at poster's request.

Ineedmorepatience Sun 27-Apr-14 17:26:57

DISCO is an assessment tool it is a lengthy questionairre. It is what the Psychiatrist used to dx Dd3.

It was designed by Lorna Wing and Elizabeth Newsome I think to pick up the hard to diagnose people.

It gave Dd3 a diagnosis of Atypical Autism but the Psych decided to give her Asd as it would be more helpful to her. Personally I think Aspergers would have been most helpful but Dd3 relates to her Asd diagnosis now and doesnt want it changed. Her currant Paed thinks she fits the Aspergers profile too.

Ineedmorepatience Mon 28-Apr-14 16:41:00

[

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now