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

(1000 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!

EauRouge Wed 18-Feb-15 09:46:54

Yes, I agree. I'll message MNHQ and suggest a new forum in SN then.

PolterGoose Wed 18-Feb-15 09:30:51

A lot of MNers don't have children so IMHO the Parents with Disabilities topic would potentially exclude those.

I quite like the thread being tucked away a bit and not too public. I wouldn't post the stuff I've posted on here on a main board, plus the SN topics only show on active convos if you opt in so although it's a public forum and it's open to all and sundry it should keep the trolls and general arseholes away.

EauRouge Wed 18-Feb-15 09:23:43

Righto, I have started a new thread here

Do you think it would be better if I ask for the new thread to be moved to parenting with disabilities? It does look a bit busier but I never would have thought to look in parenting if I was looking for an ASD support thread. Other than stalking the mental health topic and leaving links on threads I don't know how people will be able to find us.

PolterGoose Tue 17-Feb-15 21:38:44

Can you start another here for now Eau? Including adhd would be good I think.

MNHQ keep saying they'll streamline the SN boards but don't. There used to be 'Parents with disabilities' under the SN topic heading which was a bit tumbleweedy but got moved on request to the 'Being a Parent' topic heading. Personally a board for adults with disabilities would be good, for those of us who have possible 'SNs', whether we have children or not and also perhaps for people parenting adults with disabilities/SNs.

EauRouge Tue 17-Feb-15 13:28:26

Good luck with your journey smile

Since this thread is nearly full, should we start another? I don't mind doing it if no one else minds me doing it. I've got loads of links that I could include. Don't expect me to come up with a snappy title though grin Should we also include ADHD?

I was also wondering about asking MNHQ for a SN Adults forum. Do you think it would be worth asking for a separate forum so the threads don't get all mixed up? I'm new to the SN boards and I'm finding it difficult to find my way around. I'm really trying to find other women with ASC to chat.

PolterGoose Mon 16-Feb-15 15:49:07

Just popping in as this dropped off my TIO, I've still done nothing about assessment for me, I have to do it this year.

EauRouge Wed 11-Feb-15 14:16:08

Oh, I'm new to this thread too so hello to everyone else smile

EauRouge Wed 11-Feb-15 14:15:36

Hello, lostgirl. Was it you I PMed? There was a bit of a nasty thread on AIBU the other day about Aspergers. I just found out a couple of months ago that I have it. I went to a charity in the end because the NHS was worse than useless. They were the ones that suggested ASD in the first place but then backtracked because they said there was no support available and tried to give me a personality disorder instead. The charity I went to said they have seen so many cases like mine where people (especially women) are told they have anxiety and/or depression, or a personality disorder when it is actually Aspergers (it is technically all ASD now, I think).

Anyway, this is a very good book if you think you might be on the spectrum. I also found this blog post very good. And there is this women only support forum. Try Pinterest too, I've found a lot of boards on there with good links, just search for women and Aspergers.

I don't know why the NHS is so hung up on no support being available. Just knowing the reason why I've always struggled is a relief, I don't need anything else from the NHS. There is support online and there are charities that do support groups etc.

I hope that helps a bit, it took me a year struggling with the NHS before I found help elsewhere so I know how awful it can be trying to get someone to listen.

Lostgirl15 Tue 10-Feb-15 05:47:53

Hi,

I found this thread via a link on AIBU, it's a while since anyone has posted so I hope you don't mind.

I suspect I am on the spectrum, most likely something like Asperger's syndrome (does that diagnosis even exist these days?) I am highly intelligent, and performed well at school, gaining top grades and getting into a leading university, despite being bullied and socially isolated. I was someone who always tried my hardest to please the teachers and do well, but I was told I was immature and asked too many questions. I was frequently in trouble at home and was always considered the difficult middle child with a chip on her shoulder.

Once I got to university and then work, I struggled massively in the unstructured environment, and have underperformed massively. I barely scraped through my degree, and I have had a series of short term jobs, none more than about 6 months, all of which had either ended in resignation or being fired. I have suffered from clinical depression since my teens, and was diagnosed whilst at university.

When seeing counsellors for my depression, both at university and through work, two have independently suggested that I have Asperger's syndrome. After the second counsellor suggested it, I did speak to my GP, who dismissed my concerns, was unwilling to refer me, and said that even if I did have Aspergers, there would not be any support available as I was not diagnosed as a child. To the best of my knowledge, Aspergers was only recognised since the early 90s, and was predominantly diagnosed in boys (still has a high m:f ratio), and as a highly intelligent female who was academically excelling it would not be surprising if I slipped through the net.

I have a sister with SN, she has traits of ASD, dyspraxia and language processing difficulties, but did not meet the criteria for a specific diagnosis of any of these. Her difficulties are more severe and she has struggled academically, and therefore these difficulties were picked up early, and she has received support from my parents and at school and university. Whereas my poor behaviour at home was always met with punishment, hers was excused because of her special needs. I realise now that my parents were doing their best to make allowances for my sister due to her difficulties, and I'm sure if they were aware I had difficulties they would have done the same for me too, however thinking back to my childhood still upsets me because it felt so unfair to be getting punished whilst my sister wasn't.

I'm not really sure what I'm looking for here. After my GP dismissed my concerns, it upset me and has put me off seeking a diagnosis for now. I guess I am just looking for some validation that my concerns are real and I may have a genuine reason for why I have found things so tough.

Mollyweasley Wed 31-Dec-14 14:40:03

Hi shannaratiger, welcome! Perhaps if you don't have ASD you might be more aware than I am and be able to enlighten me on what is it with Saturday mornings?

That was supposed to say Dd not dad!

Hi everyone, hope it's ok to join you. I don't have an ASD diagnosis, my Dad does, but I do have dyspraxia and a lot of ASD symptoms. I so get the Saturday morning\ no school feeling. Messed up routines and everyone home. Worst of all though is no school and Dh working - Ds goes nuts all day. Sorry have forgotten my medication and Dd's melatonin? Will come back soon.

gerbiltamer Tue 23-Dec-14 22:12:52

Pokes head back around door. Haven't been on here since the summer, but as I'm signed off after walking out of work again they have agreed to transfer me back and pay for my AS assessment.

PolterGoose Tue 23-Dec-14 19:28:20

Good luck Twinkle flowers

TwinkleDust Tue 23-Dec-14 08:58:49

Finally (9 months and counting) have got my first appointment through with specialist ASD clinic for initial assessment, three weeks time. They say it will be about 30mins and I may be given some questionnaires to take away. Also, they would like me to bring somebody who could give information about my childhood development if possible.

I'm in my mid-fifties, parents elderly. My relationship with my mother is poor and I have not been able to confide my mental health issues (depression and anxiety) over the last decade with her at all (she refers to such things as 'going funny in the head'). I have a much older sister, but there is no relationship and I couldn't approach her.

Stuff I am worried about:
-the psych will assume the dysfunctional relationship with family is causal of my problems (middle-aged neurotic female syndrome!)
-that I may be imagining the asd connection
-that I may unconsciously skew the diagnosis either towards, or away, from asd.
-that I may over-compensate by exaggerating aspects of my 'presentation'
-that I may under-play same aspects (!)

Positives:
-I provided a detailed written narrative of my issues from childhood and the impact on me (social, study, work life).
-my partner of 14yrs will be with me, and is supportive.

ALittleFaith Tue 04-Nov-14 19:25:14

Hi all. <waves> I lost this thread after it moved. Will read back shortly.

Generally I'm ok. Struggling a bit with DH - he's low in mood and I feel frustrated with him a lot - his apathy or misunderstanding what I say. When he's low he can be a bit lazy and I get annoyed cleaning up after him or telling him to clean up after himself. I can't seem to ask calmly!

I heard from my GP practice today regarding my assessment. Apparently they are re-evaluating how they do the assessment process and who they deem appropriate and my case will be considered when they have re-evaluated and they next meet.....God knows when that will be?!

Mollyweasley Sun 02-Nov-14 16:38:04

Thanks mrwallet it's really nice of you to think of me! Yesterday wasn't as bad as last week. The fact that everybody is around means that the noise in the house is very much increased and tv noise really winds me up, so that is a factor. Also I am usually out of the door on the school run and get some fresh air in the week with a plan of what I am going to do that day so I think there is a bit of being out of routine too+ I am not in charge of what is going to happen as it will depend on everybody else and any plans made change slightly all the time. I was wondering last week if how stressed I am on a Saturday, reflects how stressful my week was! I think sleeping or watching tv through it might be the best idea. Luckily dd also need quiet Saturdays so I have the excuse to stay in to watch her!

MrWallet Sat 01-Nov-14 12:08:49

Hey Molly, just wondering if you have the Saturday morning feeling? I am feeling OK, had a bath and relaxing on bed about to watch The Tudors box set.

I wonder if you feel extra pressure at the weekend as spouse and or children are around and there is more to do plus one does not want to be a grump when the weekend is special IYSWIM. When I get it I try to read or watch a film until it passes. Not so easy if you have little ones.

One Saturday recently I spent the entire day dozing on and off. I felt so guilty but the crushing inertia got the better of me!

Mollyweasley Tue 28-Oct-14 15:16:27

maybe I should sleep through it too!

AGnu Mon 27-Oct-14 15:54:16

I hate Saturday mornings too. I think it's the change of having DH around, which seems ridiculous because having him around is a good thing. He really is lovely. So lovely, in fact, that he takes the DC shopping on a Saturday morning & I sleep through it! grin

Molly I'm not very good at drawing either but felt inspired & am rather proud of how it came out. I'd post it on MN but I'm a bit concerned people would misinterpret it & think it was a suicide picture or something! blush I did explain to DH that it definitely wasn't & he just said, "No... yeah... I got that..." in a tone that made me think he'd had to think about it!

Mollyweasley Mon 27-Oct-14 08:35:01

I know me too! I've really been missing it. Have you got any tips to help with Saturday mornings it really annoys me?

MrWallet Sun 26-Oct-14 20:27:35

Molly I get that Saturday feeling! I thought this thread was finished?

Mollyweasley Sat 25-Oct-14 09:29:01

Agnu so sorry you are having a tough time, you seem to have a lovely DH. Love the idea of the drawing, I always love drawing but I am not very good at it.

I hate saturday mornings, anybody else is like that? I always feel so fidgety and irritable and I don't know why and I don't know how to get better.

AGnu Fri 24-Oct-14 20:28:23

Thanks Iam for reminding me about all the good things! I've been along to an under 8s local group a couple of times but most of them had fairly 'normal' DC & I spent the entire time trying to have a conversation while keeping an eye on DS1 who kept wandering off or actively trying to escape. It was a nightmare! I might take the initiative to get to know some of the mums a bit better & invite everyone for a drink in the pub or something so we can actually chat without chasing children. I'll probably sit there the entire time terrified of saying the wrong thing & so not get to know anyone at all! blush

Yesterday was awful. By the time DH got home at 8.30 I was so stressed that I'd gone completely mute. DH really doesn't understand what to do when I'm like that & just kept whining at me that he needed me to talk to him until I went to bed & cried. I was still bad this morning but he still kept on at me. It was like he was prodding an open wound. Eventually I snapped & shouted at him to leave me alone. DS1 heard & said "Mammy, don't talk to Daddy like that!" I couldn't talk for crying after that! sad
DH took the day off & took the kids out. I spent all morning in bed & then most of the afternoon drawing. I've never drawn anything before but I felt inspired to try & capture what it had felt like to me so I could explain it to DH. Given that I'm not an artist, I'm quite pleased about how it came out. DH has seen it & I think it's helped a bit but I'm still not sure he really gets it. I might keep it to flash at him next time I go mute to remind him to leave me alone! Feeling a lot calmer now but still rather drained & out of sync.

Iamcuriousyellow Fri 24-Oct-14 14:54:09

Hi all
So glad to have found this link, on the thread about ASD on chat. Thanks to the MNer who posted it.
I do the "evening up" thing as well - if my foot feels a join between paving slabs, I'll adjust my pace so that the other foot can cross a join too and then they've both had the same sensation. I can't think about anything else until it's done.
AGnu please don't dread home educating. I've done both, my DS spent year 8 at home with problems (really vile bullying) resulting from undiagnosed AS issues - and I can tell you that HE is heavenly for an autistic mum. Most families who HE are unusual, and usually in the best possible way, and very welcoming - they love new people, and HE children are very different to mainstream educated children. At least that's my view, maybe DS's experiences had made me bitter at the time! Also the structure is so much easier to cope with.. I used to dread the daily playground routine, but group meets and shared activities take place at easier times, in the middle of the day or whatever, by that time I was organised and had my head in the right place to go out and see people without feeling overwhelmed.

Another unlooked for benefit is there's plenty of time to indulge special interests - I adore maps and charts, and we spent entire days sometimes with a big atlas on the kitchen table, we would talk about stuff like early navigators, the slave trade, the Mariana Trench, the geology of Chile, nomadism, oil production, fossil fuels, arctic exploration, American civil war, all sparked off by the time to really look at maps.. oops I'm getting boring..

I didn't mean to write this much, sorry!

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