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

Same. I was new on the last thread too but I don’t post that much

Hi everyone! Can’t believe it’s 2024 already. How weird to think that 10 years ago I was in my first year at university, having recently started my second term.

Apparently one ADHD trait is impulse buying. I wouldn’t say I have it… instead what I do is see something I like the look of and then agonise for ages over getting it. I usually do buy said item in the end. In 2021 I started buying myself a lot of art supplies (pencils, paints, pastels, paper… so many P words haha) and have hardly used them since. That’s another ADHD thing, wanting to get up and do something but not doing it. It’s one thing if it’s a boring chore eg sorting laundry or tidying your bedroom, but when it’s something fun it just makes no sense

Just a quick post so I can find this at a later date when I'm up to posting properly. Still in burnout(also struggling with covid) and it's only going to get worse as I start a coding bootcamp tomorrow.

Morning all

Sending gentle hugs @camelCase and hoping you find some quiet time to relax and recover sometime soon.

@toffee1000 I have hoarding tendencies and buy loads of a product i love as i panic it may be discontinued. I get the dopamine hit from buying the stuff then I don't use it (20 tubes of Neom Magesium Body Butter!!) The ADHD in me gets the rush from buying (especially on ebay if I'm bidding or getting a bargain) then the Autistic with OCD traits in me arranges them neatly on a shelf like in a shop, will use one tube, then obsess if there's an uneven number left on the shelf. I've got myself exhausted with it, so I'm trying hard to rein it in as it's upsetting me that my home is cluttered.

Also, yes to procrastination. In my case, my physical disability makes it hard to keep on top of things anyway, but I'm chipping away with little bits here and there and ticking off manageable around of tasks per day. Speaking of which, I'm going to get up now and while the kettle is boiling, I'm going to wipe over the cooker hobs.

Hi
son was (age 10... no idea before - total breakdown prompted investigation) diagnosed adhd and autistic which led me to my own adhd diagnosis. Not been assessed as autistic. Am currently of the view that I may also be autistic.
Struggling with a couple of things -
I don't fit the picture in my head I have of autism - and I know this is a ridiculous statement but there you are! I've had to unlearn everything I thought I knew about neurodiversity in the last 6 years, hence why I know this is a ridiculous thing to think. My son doesn't 'look' autistic and yet his needs are really high.
Would being diagnosed help me at all? I don't think it offers me anything more than the adhd diagnosis does, or am I missing something?
I feel very on the sidelines, and in need of a tribe.

@theskyispurple I think most of us (all) who've been diagnosed with Autism already always say it's worth it. It helps you understand yourself (and as ive already said on here, helps you understand and support your son). You can then legitimately go through whatever process you need to - grief, adjustment, acceptance etc. Until then, you will always be schrodingers Autistic.

There is someone on this thread who had just been through the process of an Autism diagnosis that was a shock to her. I won't tag her as she may not feel up to discussing right now. You could always read the last few pages of our previous thread (thread 2 - linked to in the OP here) as that might be helpful.

P.S. skyispurple - 'not fitting the picture of what you thought was autism' isn't shocking or ridiculous to us here, as we've had those realisations. It's a very difficult adjustment indeed, but with time (and kindness to oneself) can bring great clarity and understanding.

@RainbowZebraWarrior I love the idea of Schrödinger's autism!

I think it also perfectly explains how a tendency to overthink means that the lack of a diagnosis can cause more anxiety - I would spiral round and round trying to work out if I was making it up / attention seeking

A diagnosis can also help to access reasonable adjustments at work (or other places) so it can have a tangible benefit

@AshGirl It's a brilliant descriptor, but I can't take the credit for it. I first heard it coined by a regular MNer a few years ago. It was driving me mad, as the whole 'You are Autistic, but you aren't' (as in I knew I was, but wasn't diagnosed) absolutely drove the need for assessment for me. My major Autistic tendency is probably the absolute need for information and for facts.

Yes! We need to have Complete Answers! And we need to give Complete Answers even if people only wanted a half-arsed response

This has sent me down many a rabbit hole...

@RainbowZebraWarrior @theskyispurple
It was me recently diagnosed and still coming to terms with it but having read a serious amount of books on it now I have come to an understanding within myself and am embracing things for what they are because I cannot change them. I am who I am and the diagnosis is making me see things that bit more clearly.

Can I join the thread even if I only suspect I may be autistic?

Except I don't look like a swan either 😂 there's usually one small outside sign, I stim a fair bit and I tend to look put together-ish but will have forgotten one thing, such as to check my hair/makeup every five minutes. So there'll be one part of hair wildly out of place, my shoe will be untied or my mascara will have run etc.

I'm an impulse buyer. This new year I've removed my card details from my phone. The scroll and buy urge is strong... 🤦🏻‍♀️

Ok, a lighthearted one - what has been the most comical part of your diagnosis.
Psych: Do you tend to blurt out the.....
Me: Yes...
Psych: ... answer to .... oh I don't actually know why I asked that. You answered every question before I'd finished.

@AshGirl @RainbowZebraWarrior
These two comments made me laugh out loud as this is exactly me! I have suspected I am autistic for years, but oddly enough didn’t spot it in my two daughters. I fell down a rabbit hole with one starting with dyslexia, and it has ended with both girls being diagnosed with Autism and ADHD.
I am booked in for my ASD assessment this week, as I can’t possibly not know for definite any longer!!
I am really glad to read this whole thread though as I found a Facebook thread yesterday saying not to get diagnosed as an adult, as it caused all sorts of problems eg needing medical clearance each year re driving (I have double checked re DVLA and that is not correct in UK), not being able to immigrate/ adopt etc (no plans to do either!) but that thread made me start to doubt my decision.

I really hope you don't mind me posting this in here as I'm not sure if this is what this thread is for. I've had suspicions I could be ASD for a while now but the couple of people I've mentioned this to just say I'm being silly.

My reasons are these:

I get quickly burnt out by social interactions and will have to sit on my own to recover. If I get too burnt out it's like I switch off, I can't even talk

I hyperfocus on individual tasks and find it very hard to switch out of them

Other people seem to naturally understand social "rules" that I have to be told e.g. someone told me recently that sending "Ok" as a reply to a long message can come across as rude (?)

I find any complex social dynamics (especially where people are not saying what they actually mean) confusing, like 4D chess to me. This has particularly affected me at work

I'm an oversharer (including with people I've just met) but don't like physical touch (like hugs)

I've realised I'm always tapping my thumb against my other fingers which I've heard could be stimming (?). Over the years I've also realised there are things I do that other people find weird like laughing too loud or sometimes my facial expression goes totally blank without me realising and someone will say "are you ok?"

I'm also a software developer which I know attracts a lot of people with ASD

-

Am I being ridiculous? I don't need strict routines and I'm not especially sensitive to sensory stuff so I wonder if I'm barking up the wrong tree. Tbh I don't even know what I want from this other than to maybe feel a bit less alone.

My ADHD psychiatrist is obsessed with car analogies and will bang on about ADHDers being sports cars with the wrong fuel, or bad drivers, or something - I tuned it out after a while as I got the point about 5 minutes before he stopped speaking...

I understand the analogy, but I always think that a F1 car is basically useless - you can drive it very fast in a few select places in the world but you can't take it to the shops or on the school run!

.....................obsess if there's an uneven number left on the shelf

OMG this!

I can't cope with odd numbers. I can't buy things online if they're "three for two" - it's just wrong. All dials have to be set to even numbers.

I like Actimel yoghurts and line them up neatly in the fridge - but I can't eat just one, because that would leave an odd number of them on the shelf.

It's infuriating because I then have to eat two or persuade DH to eat one so that the numbers remain even

With regard to even numbers:

We recently went to choose a Motability car. We had decided on a Renault Arkana and went to test-drive it.

DH drove it and I sat and fiddled with the computer screen. I was wildly delighted to discover that the volume dial for the music on the memory stick/radio had visible numbers - so I would be able to set it to an even number.

Our current car just has a dial without numbers and over the three years we've had it, it has upset me that I don't know if it's set to an even number or not.

Odd numbers are very unsettling for me.

So anyway, when I found I could set the volume to a visible number, I was irrationally thrilled and told DH that we should definitely, absolutely get this car. I didn't care about anything else.

I am the opposite and even numbers give me the willies. Radio or tv have to be on an uneven number!

I hadn’t seen the last threads but glad I’ve found this one.

Even though I’m 50 I’ve suspected for a while now that I may be ND.

I have struggled all of my life (from very early childhood) with so many issues. Had very strange ‘quirks’ and behaviours as a child but was told that’s just me, it’s who I am, that I’m strange/weird/emotional, unsociable etc. So I have just bumped along through life (struggling very much along the way).

Perimenopause, for some reason, has made everything so so much harder, as though all of these quirks and behaviours have ramped up a notch without me doing anything, having no control over it.

I truly do not know if I have Autism or adhd or a combination of both but I’m too scared to look for a diagnosis, I mean, who is going to take an almost 51 year old woman seriously? I’ve spent years being told all my issues are anxiety, ocd, an eating disorder, depression etc - it’s almost as though this is branded into all of my medical records and no one is prepared to consider any other possibilities. Does anyone else feel
this way?

And people on social media seem to have made autism and adhd a fun thing, something to joke about. My lifelong struggles have been anything but fun. I’m worried my GP would see me as someone who wants to jump on this bandwagon.

@ncforthisone256 hi and welcome!

I usually share this information to anyone questioning going forward for assessment:

Fill in the AQ50 online (just Google AQ50) This is not some sort of online self diagnosis tool, it's a tool used to see if you meet the threshold for assessment. It is likely that if you went to a GP and asked for a referral, they would ask you to complete this anyway (mine did, and a lot of the private providers do too)

Answer the questions with brutal honestly. At the end, it will give an indication of whether you show significant Autistic traits (or not) This will help you understand that you aren't just going mad (been there) and like I said, it will also start the process of being able to access assessment.

Note - I think in England, the Right to choose pathway is still an option which means shorter waiting times. Not sure about other nations.

For what it's worth, the traits you've listed sound like social and communication related Autistic traits to me, but that's obviously only a snapshot. There's also the sensory side to look at.

IME, it's not usually a good idea to ask people in your life at this point. If they are NT, they can often come out with (as you've had already) Don't be silly / everyone is like that / everyone is a bit Autistic. However, do bear in mind that often assessment asks for input from someone who knows you well.

"Perimenopause, for some reason, has made everything so so much harder, as though all of these quirks and behaviours have ramped up a notch without me doing anything, having no control over it"

@Picklemeyellow Perimenopause / Menopause amplifies Autism. There are only really studies being done on it now. It's when a lot of women who have previously coped, fall off a cliff so to speak. You will see a lot of women here who have been diagnosed in their 40s / 50s / 60s (51 upon diagnosis here)

Edited to add: "who is going to take an almost 51 year old seriously?" Well my GP did, and hundreds of other women too. Also, previous incorrect diagnoses of mental health conditions or co morbid mental health conditions is very common. I can promise you that you aren't going mad, you will be taken seriously and we have all been through very similar if not identical feelings and worries. Diagnosis is worth it, believe me. See my previous post regarding AQ50

@Picklemeyellow I was 50 and 52 respectively for autism and ADHD diagnoses, and it's changed my life enormously. I'm a lot kinder to myself now, as I'm not shit at life, deficient or defective, just differently wired.

Just to mention, you don't need a diagnosis to have reasonable adjustments in work. You just need to have support needs. The government also offer Access to Work support. They can fund things like a work coach, active noise cancelling headphones, assistive software etc.