Autistic women assemble! #3

[Nepmarthiturn]

This is a thread for autistic women to connect, chat, vent, laugh, share and seek advice and solidarity (small talk and word mincing not required). 😊

Any autistic women newly finding the thread are very welcome to join us (even if awaiting diagnosis) but we'd be grateful if others could leave us alone please…

Previous threads:

1

http://www.mumsnet.com/Talk/_chat/4777843-autistic-women-assemble

#2
http://www.mumsnet.com/Talk/_chat/4865805-autistic-women-assemble-2

Yes, I get that. Thinking back over the years as to how Autism and ADHD has been spoken about and misdiagnosed, Neurospicy certainly isn't one of the most offensive terms.

We are all different. A lot of people who were diagnosed with Aspergers, shortened it to 'Aspie' and some folk call themselves Auties or Autistics. I don't personally relate to any of those terms, but I fully appreciate why those who were diagnosed originally with Aspergers would still use those terms. The term Aspergers is now linked with negative connotations, which must feel shit to those who have that diagnosis on their records.

Always an interesting discussion, and absolutely always a good discussion to have with those who have lived experience (as opposed to the language and opinions of those who don't)

Can I ask why Aspergers is linked to negative connotations?

The Austrian scientist / doctor Hans Asperger worked with / collaborated with the Nazi regime. He basically identified and split those who were high functioning and high IQ from those who were more severely affected. The higher IQ people and children were 'kept' (i.e. seen as more useful) and the lower level IQ people and children were executed (not useful to the regime) It's why Aspergers has been ditched and is not given as a diagnosis any more, and hasn't been for some years.

Even without the Nazi connection, it was always used to separate those with higher IQ and those with lower IQ / possible learning disability, therefore very divisive.

Edited to add: This was the the original terminology and difference in criteria between Aspergers and Autism

I never knew this- this is very interesting.
Is there a best source of information regarding this?
Doesn't anyone know about research into autism and where it's published?

There's an awful lot of information about Hans Asperger online, albeit of course there will be conflicting information.

My heart goes out to those that were diagnosed with the condition in his name. (Who now feel conflicted at best)

Anne Heggarty is one notable person who, for years, used the term she was diagnosed with, and now refers to herself as having Autism.

The least ambiguous, and most factual and trusted source, I'd say would be this, from the charity Autism uk.

https://www.autism.org.uk/advice-and-guidance/what-is-autism/the-history-of-autism/asperger-syndrome

Fab thanks.

As it's been 8 weeks since we sent the forms to SSS for the ADP Redetermination, we can now complete the forms for a Tribunal.

I'm going to phone them tomorrow and point out that they're meant to make a decision within 8 weeks.

Best of luck, Shell. The wait times are atrocious. When I applied for DLA for DD, it was originally stated it would take 12 weeks. It ended up being 23 weeks. Fair enough, it got backdated, but it's the fact that it's always there in the back of your mind, stressing you out while you're waiting.

Welcome, @steph97
Most of us have had a similar reaction to our diagnosis.
It's hard to get your head round it, isn't it?

Yay! Result!

DS has now been awarded the higher rate of ADP.

I'm so happy he's finally getting everything he's entitled to get.

Well done. It’ll be a weight off your mind

That's great news!

Thanks!

Can I peek back in here? It's been a while and I was originally umming and ahhing about getting a diagnosis. Today, I was in a counselling session and my counsellor asked if I had considered AuDHD because of everything I was describing. She is knowledgeable about ND (partly why I chose her, I have been seeing her for a few months now). The truth is that I have considered it and then squished it down in my mind as far as I could. I'm petrified of seeking a diagnosis, of being laughed out of the room or being told to stop looking online. I don't even really know where to start if I did consider looking for a diagnosis or what it would change for me. I feel really stuck because I think it's true, but maybe I'm kidding myself. Does anyone have any words of advice?

Hi @Floopani
I think we all know in our hearts what our diagnosis is. I also think it's usual to worry that we'll be told we're not autistic, even when we believe we are, and when many other people also believe we are.

Go for it. It's unlikely that you or your therapist are are wrong.

I have to totally agree with Shell here @Floopani

All I will add is that the Autistic person in me knew I was Autistic. My history and experiences proved it. The Autistic person in me researched it all, and it all fitted me to a t. I needed to know (I'm massively fact driven) and I also wanted to know as I wanted to understand myself better. I could write pages on this, but that's basically it in a nutshell.

I sometimes wonder (I'm also AuDHD, but driven more by the Autism) if the ADHD aspect makes some of us question and put off regarding assessment.

I do hope that makes sense.

For me, seeking assessment was a no brainer. I'd have driven myself mad wondering and not knowing, otherwise.

Also, a very wise Autistic woman on MN once said to me that being Schrodinger's Autistic is a horrible place to be. Asessment and diagnosis confirms either way and means you aren't in limbo. Again, I hope that makes sense.

Thank you @RainbowZebraWarrior and @TheShellBeach, your replies mean a lot.

It really resonated when you described how fact driven you are, I had exactly this conversation in my counselling today. I'm very fact driven too, I need the information to make sense of things. I have researched and researched. But this certainty of a diagnosis, something stops me. I guess I'm truly being Schrodinger's autistic because I can see all side of where I fit and where I don't fit what I have read, but I'm scared of what getting an actual diagnosis would mean. It's almost more reassuring or comfortable to be stuck in limbo, researching.

When we recently collected DH's Motability car, I drove the man almost to despair, asking question after question about the various buttons and knobs in the car.

I had to know what they did, and why, and I even considered complaining when the man failed to explain properly.

He actually backed away and told me to look at a You Tube video of the car.

Cheek.

@Floopani I think being fact driven is and was a very simplistic way of describing why I had to seek diagnosis. It also depends on many other factors; self doubt, self esteem and self awareness are big ones. I don't suffer with self doubt or self esteem issues. I have a lot of self awareness, too. There wasn't really anything else to muddy the waters with me, like depression for example. It was all quite straightforward (in my head, anyway)

Age and relationships are another factor. I'm 52 and had got to that stage where I didn't care what anyone else thought about me anymore. It was about me for once. Wondering and second guessing what a partner, friends or family might think wasn't too much of a consideration for me.

Also related to age, I'd hit menopause and was disabled by other health conditions. This amplified my Autism, and I was no longer able to mask, so this was a massive driver for me.

Have you completed the AQ50? That was the clincher for me.

@TheShellBeach oh crikey, I've been there. Cheeky sods. It's their job to indulge me and show me how everything works in minute detail, surely? 😆

Of course it is!

And if I don't understand something, I carry on asking questions until DH gently moves me on.

I still don't understand what the B means on the gear stick thing

Arghhh post on aibu today talks about 'training' autistic people. But apparently that's ok because that's how a severely autistic person says themselves, Urghhhh. It's wound me right up.

My nerves are raw this week, so I took a quick peek then left.

There's a poster on there who seems to be popping up everywhere at the minute. They are an utter cunt and I'm not engaging with them.

"Why should other family members have to suffer miserable lives, just so one member is happy?"

IT'S A FUCKING DISABILITY!

I’ve not seen that thread. I hope it’s deleted now