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

[OxfordBags]

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!

I'm a nurse so fairly knowledgeable about medical stuff. A couple of years ago I was a patient. I was amazed at how powerless I felt as they talked about me, making suggestions of what it could be (I had a mystery abdo pain. Think them saying Could be ovulation, me thinking 'No it started on CD2!') But I was unable to voice any of it. Horrible experience. I agree writing it down might help.

Interesting yesterday, my friend id visiting. We were walking in to a pub with paving slabs and gravel. I could only step on the slabs. My friend saw and commented that I'd stepped on the slabs in an autistic way! Not negatively, just an observation.

Holey, that's exactly what I'll do if I write it down.

I have an appointment this morning with my GP.

I'm terrified of just being laughed at and told not to be stupid.

And when she asks "and what makes you think that?"

What do I say?

Where do I begin?

I think she'll just say "you just don't make friends easily" "you're an anxious person".

And that's just to get a referral :(

I wasn't able to articulate the issues either. So I said to the GP could I write it down as I was finding it difficult to find the words? They said 'of course'. So I went away and wrote a letter, asking for the referral, detailing the issues with examples. This puts the ball firmly back in their court and requires them to respond, and justify a non-referral.

I'm sat waiting now. I just hope I can get the words out. I keep coming up with all the counter arguments "well we all do that sometimes" etc etc.

I'm sat near a man who has tics. I put all my effort into not moving. How on earth am I supposed to walk into a room and drop all pretence and learned responses for 10 minutes in an attempt to show what it is I am?

So, she is going to refer me. She was very nice, but very "we're all individual, you don't need pigeonholing, why don't you just get counselling for dealing with any social issues?"

It didn't help that I walked in, said I wanted a referral to see if I have aspergers, and burst into tears.

I tried to explain that that wasn't normal behaviour for me. But I don't think she believed me really.

She wants me to drop in a list of things I do that make me think I have a problem, and then she will refer (she never argued that she wouldn't, just wanted to make sure it was what I wanted).

So I failed to say anything right and I feel like an idiot. She also said that the provision around here was appalling.

So now I need to try and write down a list. I don't know where to start.

You know what, having help for any social issues might be better than a blanket diagnoses of Autism for an adult.

Hi FYC at least you have the ball rolling. This is the reason I went for a private diagnosis as I knew it was quite complicated and long drawn out in our area, though my son will probably go through with it because of his age.

Incidentally very early on in the thread someone says they have just got diagnosed "a proper NHS one too" which I found a bit off putting as it seems there is a hierarchy even in Asperger diagnoses which is a shame as not everyone has the same kind of access.

I "knew" I had it and my diagnosis confirmed it. I suppose I am inferior to some with NHS one for some reason. No matter, I am so grateful to even have found out that I don't have to live a life of self blame anymore.

This is why this thread is so important as explained in the first post, for all women diagnosed and undiagnosed. Very best of luck to you. x

Jason, on a practical level, I guess being taught how to fake it all better might help me fit in, but I think I really need to know whether it's who I am (in which case I can accept it and do the best I can with what I have) or learned responses of some kind (in which case I can deal with them). I'm probably not explaining myself at all. I did want to snigger slightly, since the provision for counselling etc. around here is abysmal, so even if that was the answer, accessing it would be hard enough :)

MrWallet, I think the nhs question really depends on what you might want the diagnosis for. Dh and I discussed going private. I think for me it's the case the if I return to work and have an nhs diagnosis, then I have some protection on a practical level. So whilst knowing one way or the other is my current aim, the nhs diagnosis could be more useful in the future on a practical level.

So we shall see how far we get.

FuckYouChris I think I understand you, but i might be totally wrong.
I think sometimes people want to feel like they belong somewhere, they have spent their lives feeling different and as they have gotten older is more and more apparent. So for them having a diagnoses is like having a place after feeling lost most of their lives.

Jason formal diagnosis brings legal protections that 'social issues' doesn't.

Really?

Jason, I think it's more of the "ugly duckling" syndrome. I've always defined myself as a duck. I've tried my best to be a duck and with some careful mimicry, I think I'm not too bad at emulating all that is duck. It's hard work, because being a duck doesn't come naturally to me, but I've worked on my quacking and most people don't seem to notice.

I've always judged myself as being a crap duck. Why is being a duck so hard? Other people don't find it hard. My dm finds it odd that I often don't want to do things that ducks do. She pushed me to do more duck things, these things exhaust me but energise other ducks.

So now I've found a description of a swan, and it fits exactly with who I am, what I find hard, how I think, move and walk. Now, I'm not sure if I am a swan or not. But if I am, then I'm not a crap duck, I'm a normal swan. And I can still do all the duckish things I've learned when I need to, but I will be certain that I am a swan.

And that's probably a really crappy analogy, but I like crappy analogies.

Polter, thank you :)

Then really it must be a problem with society, people thinking they have to be ducks instead of allowing themselves and other people to be swans.

Maybe in a way, but it's very subtle. when you're talking about "normal" social behaviours, how many are intrinsic and how many are learned?

I remember being told to smile, and to respond in certain ways to things as a child. These weren't how I felt, but it was clear they were how I was expected to feel. Children love to be hugged. My children love to be hugged. But I didn't, and people took offence if I didn't hug them, so I forced myself to if I had to.

I'm often told I should get out more, meet people, do X, go to Y, because I can't possibly be happy with my own company. So at times I've done all those things. Not for myself, but because I "should".

I think people worry when someone else is doing something that they would find upsetting.

I was discussing someone with my dm the other day, one of my neighbours has severe social phobia, she is intensely shy, doesn't leave the house and doesn't like seeing people. Dm felt I should go and say hello. I can't see how that would be a nice thing to do to someone who has a social phobia. We both view the same thing very differently (dm is enormously sociable and cannot function without seeing people). I don't know who is right.

I don't know who is right.

No one is right.

Upthread someone mentioned about loving driving
I wondered if you'd seen this or thought about it as a career option teaching other aspies maybe?

Ooh, blank, looks interesting :)

Jason, I guess the problem comes in when you have social norms that most people do automatically. Some people don't do them because they are rude, some people have to learn them, how do you know who is who? If you can learn the norms then you will, it makes life easier in general, but isn't a fundamental part of you. I don't think I'm explaining it well at all.

I'm 45 and after years of wondering WTF is wrong with me I am going for a private diagnosis of AS.

It's for my sanity and protection.

I have an AQ of 38 but thats after CBT and years of support group work for social anxiety. I was misdiagnosed with SA 15 years ago.

No surprise my anxiety has not gone away. I am constantly exhausted from holding up the facade.

It's also horrible being hated/disliked when you don't mean any harm.

I'm the black sheep fuck up in my family.

I'm in an abusive relationship too, I just dont have the skills to defend myself.

My brothers hit me too.

Colleagues don't like me, neither does my boss. Too much time off sick. Too much procrastination

If it were not for my DD I would top myself.

Why was a born like this, it's so bloody unfair.

Oh that was jolly

I think the sadest thing from this thread is how many peoples families /parents don't understand their own children. Would you have felt different about yourself if you were brought up knowing it doesn't matter in the slightest about social norms?

Kanga, no need for masks here.

No one has a right to hit you :(

Sorry about my first post, a bit blunt sorry.

Thanks Jason you've made me cry (oops), it is sad really sad.

I try to please, appease etc but all they see is failure.

Kanga was the smartest of us all, best in year in secondary school but compeltely fucked up her A' levels.
I know now I just could not cope with going to a massive 6th form, I was bullied there, I bunked classes to go to the library in town or alone to a cinema.

Kanga was the prettiest, mum used always tell me I was so good looking I could anyone I wanted.
But I was andrognous, preferred the company of dogs, dressed like a "bag lady", was frightened of men/boys and couldn't beleive anyone could find me remotely attractive.

How could smart Kanga stay with her husband when he's pushed, thrown, hit, used etc

They see me as an utter failure, I had gifts (that I couldn't see) and wasted them.

If in the late 90's if I had been diagnosed with AS instead of SA I would have had a chance I think.

The SA diagnosis told me I just needed to work at it and I would be normal. :(

I'm so sorry, i really didn't mean to make you cry.
I am really sorry.

Kanga, is just fine the way she is :)

Do you feel like a diagnosis will set you free? I think that's how I see it (and yes to being the clever one who never got as far as she should, and the one who dressed "differently" and is the black sheep of the family).

No worries Jason, I am just too emotional :-)

FuckyouChris (good name)
I just want some protection.
When I was alone with my dogs, I coped with work fine.

Now I have relationship stress, children, old sick parents, school runs etc etc My work has suffered.
MY DD is the world to me, I have keep my job and ensure a better future for her.
A diagnosis would offer me more protection hopefully. I have been bullied at work too, my boss gave me no protection.

It would also give me a bit of peace of mind. Im not a complete fucktard. I have a neurological difference. I have tried hard and it's not my fault.

I like it here, you guys are nice :-)