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

999 replies

EauRouge · 18/02/2015 09:12

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 Grin

Please come and join in!

OP posts:
Thread gallery
12
Toooldforthat · 04/05/2015 19:37

Hi everyone, I am in my forties and very likely have Aspergers. 10 yo DD is being assessed for it now and all the readings around it made me realised that I have it too. Now, how about oxytocin? Anyone tried it? If so what dose? What form? Is it available in this country without prescription? I found lots of advice on melatonin but hardly any on oxytocin. Thanks!

BertieBotts · 04/05/2015 19:43

I think these kind of thoughts are very common. They talk about processing a diagnosis almost in a similar way to the "seven stages of grief".

It's a real mixed bag. I'm in the opposite situation where I'm almost certain there is something (ADHD in my case) and I'm now at a place where I want the diagnosis, but probably a year or two ago I was really struggling with - and still do occasionally have moments where I struggle with - the idea that I'm never going to "get better". I'm probably not going to find any magic kind of organisation system which works, DH is going to be forever frustrated with my lack of recall for conversations and instructions, I will often be late, I'm not going to look put together, I can never home educate. Those things are hard often because we've spent years thinking "If I can just.... then I'll finally be able to...." and to realise that it might just be the case that something is actually in the way of that is quite a hard thing. Plus it brings up all of those old things people said to us. "You're just lazy, you do it when you want to." "You're so rude/antisocial sometimes. Why don't my feelings matter to you?" (Oh but they do! So, so much!!) "Why can't you do it like everybody else?" - I spoke earlier in the thread about feeling depressed but feeling as though it "didn't count" as depression because the things I felt down about were true. I am forgetful, disorganised, scruffy, sometimes appear rude, messy, and unmotivated (which always looks like lazy/excuse making). But I can get systems in place which mitigate some of these, and the others I just have to learn to accept. Everybody has flaws.

The positives are that you get to understand some parts of yourself which are good are also related to the ASD, and also as you've found, it gives you firstly permission to stop trying on some things and find ways around them, and secondly a handy way to find (especially online) other people who struggle with the same things, and discuss what works for them and how they handle these issues in a way it would be quite impossible to explain otherwise - because a NT person's way of coping with e.g. an awkward social situation might be quite different to the way a person with ASD might find best to cope with it. The problem might look the same but the underlying reasons will be different and so the solution is different too.

CatOfTheWoods · 04/05/2015 20:41

Yes Bertie, your post makes me think that at least if you understand yourself to have a condition like this, you do have to learn to accept it and work with it. There are some people who will never accept that they have any flaws (I suppose I'm thinking about my mum here, among others!) and maybe that's harder work to be around, than someone who can know about themselves and what they struggle with, and make the best of it. A journey of self-understanding is not a bad thing, for anybody, if I try to see it that way.

LeChien, when you say no one would take you seriously without the diagnosis, I know what you mean. Now I've got this far, having been verbally diagnosed by a psychologist, I do want to make it official, even though I've been upset by the idea. I want it to be something I can be sure about because it's down on paper and no one can say oh they don't reckon I am really.

Allofaflumble · 04/05/2015 23:11

LeChien I never brush my hair either! It just gets stuck in a ponytail.

I hate looking primped and I hate to have to dress up for any social occasions.

LeChien · 04/05/2015 23:15

All :)
The last time I wore a dress (or tights or 'nice' shoes or lacy underwear - horrid itchy things) was when I got married!
I have my hair cut when it gets mop-like and wild, then have it cut as short as I can, as I hate going to the hairdressers.

cherryblossomtime · 05/05/2015 07:26

Yy I have to wear comfortable clothes, I hate tights too! I choose all my clothes for comfort and keep them forever. I tend to look really scruffy and mismatched. It does not help that I am plus size and on a budget, and I dont really like clothes shopping! I hate choosing from a range of things.

BertieBotts · 05/05/2015 09:03

I loathe brushing my hair. I have to now because it's chin length (I've had it work its way into a bird's nest before!) but I usually keep it cut short because it's way less maintenance, and it hurts less to brush it when it's short. I only grew it because I didn't want to go to the hairdresser! And DH made a comment about liking it long.

I get into a proper rage state when I brush it, though. I have to go and do it away from other people because the moment somebody tries to speak to me I will explode at them Blush like - can't they see I am doing THE MOST ANNOYING THING IN THE WORLD?!

cherryblossomtime · 05/05/2015 09:25

I have long hair and I dont mind brushing it, but I dont like messing about with it. Dd has taken to wanting to try out hairstyles on me and it sets my teeth on edge. This is despite the fact she has always been awkward about her own hair. I think she has some ASD traits too.

BertieBotts · 05/05/2015 09:50

Lol, she probably wants to try them out on you to negate her having to deal with the feeling of messing with her own hair Grin

I don't like touching others' hair either. DS's hair is okay because it's thick, wavy rather than curly, not long enough to be tangled and it's never greasy because he's a child.

cherryblossomtime · 05/05/2015 14:20

Yes I think that could be it bertie she likes doing my make up too another thing i dont really like, normally I dont wear makeup. She doesn't like being touched very much, she's always hated being kissed and hardly ever lets me hug her unless she is ill or something.I am not keen on being hugged by most people other than very close family myself, but would like to hug her. I have to make do with hugging my dog instead. Another thing she hates is being photographed, its a shame as she is very pretty.lf we go somewhere, I normally get one of the back of her head just to show she was there.

CrohnicallyInflexible · 05/05/2015 14:23

Looks like I'm in a minority here, I LOVE having my hair played with. It sends nice shivery sensations down my spine. Imagine what a dog or a cat looks like when you hit the sweet spot between their ears, and that's me when someone else does my hair. I'm always disappointed when my hair cut's done!

However, I can't be bothered to do my own hair, it doesn't feel as nice (like you can't tickle yourself) and I can never make it look as nice as the hairdressers do! So I tend to either go short so I don't have to mess with it, or long so I can just tie it back.

CrohnicallyInflexible · 05/05/2015 14:24

Obviously not hit them! I was thinking when you stroke/scratch between the ears and get that spot.

cherryblossomtime · 05/05/2015 14:25

That reminds me, on one of the aspie quizzes a question was: " Do you get the urge to pick flakes out of peoples hair?" I guess this is something many autistic people do? Anyway its weird and a bit disgusting, but I always want to do this. Not sure why.

CrohnicallyInflexible · 05/05/2015 14:32

I love picking flakes! I do it to my own scalp (along with any other loose bits of skin or scabs, especially round my nails) but also DD, she has a tendency to get cradle cap and I just love picking the yellow bits out. Unfortunately she hates me doing it so I'm lucky if I get 2 or 3 decent sized flakes out.

Doing it to anybody else would be disgusting though!

cherryblossomtime · 05/05/2015 15:05

Lol I do it to dh, luckily he doesn't mind! But dd won't let me. I am always scratching my own head, actually I have always thought I dont do any stimming, but maybe this is a form of stimming?

cherryblossomtime · 05/05/2015 15:08

tooold sorry didn't say hi before. I dont know anything about oxytocin, but I would be careful of drugs.

SoundingBored · 05/05/2015 15:40

Hi all. Just catching up with the thread.I'm actually thinking of printing it off as I seem to have real problems with being able to follow it on the screen! So please don't think I am being rude if I don't always respond or comment on others' contributions.

Today I printed off the Tania Marshall and Everyday Asperger's Checklists and have started having a think about examples I can use to demonstrate my issues when I see my psychiatrist later this month. I've also printed off a bit about the 'triad of impairments' from the NAS website, but having a REAL struggle with this. I definitely struggle with social interaction, but don't know how to articulate my issues with social communication and imagination.

I did all this for my DS when we were seeking a diagnosis for him five years ago and it was time consuming but very straightforward. It feels a lot harder doing it for myself, as an adult woman.

Starting to worry that I am going to sound like a loon at the appointment Sad.

Has anyone been diagnosed privately in the London area? I'm just trying to have a back-up plan...suddenly it seems really important that I am diagnosed.

Allofaflumble · 05/05/2015 15:41

I scratch my head a lot. My ds liked picking flakes off my scalp until he became aware he might seem odd. He was like a monkey!

Now his girlfriend gets the treatment. He scores 179 aspie on RDOS. I am 178. Not really much doubt but people still say we don't "look like we have it".

SoundingBored · 05/05/2015 15:41

Btw, I LOVE picking Grin. DD has a dry scalp and I always have a little pick before I oil it and wash it. She doesn't mind Grin. I pick the skin around my nails, too

Allofaflumble · 05/05/2015 15:57

Does anyone have the habit of using a more complex word instead of a simple one. For instance someone asked me how I was and I replied that I was perturbed instead of worried! I also used the word purloined instead of stolen. I have always had this.

I recall people saying I had swallowed a dictionary! Smile

CrohnicallyInflexible · 05/05/2015 16:25

flumble I like complex words too. Sometimes they just give the exact correct nuance that I'm after, other times I just like the sound/feel of the word in my mouth.

cherryblossomtime · 05/05/2015 16:35

sounding this table was helpful and might be good to print out adult female aspergers traits

BertieBotts · 05/05/2015 17:03

Oh yes Blush I like picking heads too, it's a combination of revulsion and fascination. And squeezing spots etc. I would never ever click on sporn threads though, I really have zero interest in seeing somebody else do it, it would probably make me sick!

SoundingBored · 05/05/2015 18:39

Thank you so much cherry - have printed that off. Very helpful!

I definitely use complex words quite a bit and am forever searching for the exact word I need to express myself. I get frustrated if I use a word that will 'do', but isnt quite right. I thought I was the only one Grin.

Allofaflumble · 05/05/2015 19:16

It is great to find other people with the same traits.

OK, here is another one. You may have heard of the name Trypophobia. Someone came up with the name for people who have a physical revulsion for certain patterns, clusters and the like.

My Mum had this and I strongly suspect she was autistic. I also started to have reactions to patterns and holes, think tree bark, crazed earth, chameleon skin. Adverts on tv have upset me. There was one for the oral b toothbrush and another for body cream but I forget what it was. It was made up of repeating patterns of people I think. I would want to scream and run if I happened to see it.

Sleeve tattoos or allover body tattoos have the same effect.

My skin ripples and my back shudders if I see these things or think and remember them. Also it is very hard to stop thinking about them too.

Anyone else? :)