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

Well, I certainly did! Endless googling.

Having three autistic children led me to seek my own diagnosis.

Hi @AlpacaWooly have you done the pre assessment paperwork?

I basically wrote my life story. Food issues from birth, shyness, easily upset, confusion around facial expressions and other peopes intent, inability to speak up, awkward, misunderstood, bullied, sensory issues like hating the beach, getting upset at parties and not being able to cope with other kids. Late walking, poor at sport, never really learned to ride a bike. OCD tendencies, fixations / obsessions / special interests. Preference in being alone and reading as a child also. Losing myself in / prefering a fantasy world. Avoidance tactics employed for any situations I found difficult (lots!) I was always doing things like hiding in cupboards as well.

My therapist used to ask what I'd do if I wasn't found to be Autistic. I think she thought I'd pinned everything on it as an 'explanation' I guess I had, but that's because I just knew. I think it's often the case when you go down this path after your child has been assessed.

I’m joining this thread so I can follow it! I just heard about it on another thread!
For about 15 years, I have suspected I was autistic and have adhd, but I never sought diagnosis.
now I feel in a bit of a weird position as if I were to mention it to someone I fear I’ll be called out as not being diagnosed - and I’ve also seen people diagnosed with autism saying how angry it makes them when people identify as autistic :(
but much of my adult life the last few decades has been a quest to create supports and coping mechanisms and delve deeper into my own felt experience to understand myself and make a life that works… if that makes sense.
i guess I feel like I was just getting to the point of being open about it… right when diagnosis suddenly seems more important, and also impossible! My gp supports me but I can’t cope now I’ve been sent the wrong forms by the receptionist!
And I also have this objection on principal… of why should I need an outside observer to validate my experience!
I feel like I should just be able to say things to people like ‘this place is too loud for me’
Now I’m a parent of 2, I’ve really had to scale back things like socialising and travelling to see old friends, and it would be great to be able to explain it to them (sensory overload and difficulty with executive functioning) so they don’t take it personally.
I’m going to start reading back over these threads and see what nuggets are already on there!

Hello! Yes I have but I found the questions to not be that thorough. I thought it would cover more. I wrote a LOT but there are a few more things I want to say in my actual assessment so I'm going to write some bullet points so I remember those too. The lady I've spoken to a few times at the assessment place was super nice so I will ask if I write some extra points if they can attach it to my original developmental form.

Attaching extra pages is a good idea. There doesn't seem to be a standard approach by the individual companies that assess. I also went through RTC. I had to confirm what age I babbled, talked, walked etc. My mother also had to complete a lengthy form with lots of historical information. I also had bullet points for my actual assessment. I know I go into an awful lot of detail though. It's a big part of my Autism. People always say "why use 10 words Rainbow, when you can use 100"

Thanks for your advice @RainbowZebraWarrior it's much appreciated! I filled out a form for my dd's referral through school which was more in depth with questions as you suggested, so that's what I was expecting. I did ask my mum to help with some questions but she can't remember at all (plus I am 1 of 4 children and she never knows who did what and gets us all mixed up!!).

There were only two questions relating to childhood - one about my social network as a child and another about how/what I used to play. Neither of which I can remember much of as my memory is really not great. I didn't think about mentioning my hatred of sports/never being able to run very easily, or able to do a handstand like my friends/not riding a bike until I was very old and not being able to swim! So I will add those to my extra info.

I

People always say "why use 10 words Rainbow, when you can use 100"

Ha ha. My children once made the mistake of asking me how a placenta is delivered..................

The external observer giving the formal diagnosis unlocks reasonable adjustments from employers and service providers.

When on the waiting list, I told people that I was awaiting assessment.

@RainbowZebraWarrior thanks again for the advice earlier. I've just sat and written an extra 2.5 pages of bullet points which I hadn't covered in my questionnaire! They didn't seem to obviously fit under any of the categories at the time. I am feeling much better about it since getting the extra stuff written down and have emailed it off to be attached with my original questionnaire.

No problem. Pleased to help. I think once I started to write things down, and couldn't stop it all began to fit together and make a very clear picture.

"LoveSandbanks · 22/01/2024 14:28
I hate this trope that autistic people have no empathy. I have loads, one of my boys has buckets of it, the other doesn’t understand what it is and why it would possibly be useful - even on an intellectual level.

I think we sometimes demonstrate empathy differently to NTs but you’d think with their superior social skills and they’re fecking eye contact they’d be able to understand that.

sorry a bit grumpy and venty today."

I'm new to mumsnet and can't work out how to reply to a particular post. I am using my phone and it would probably be better on a laptop.

Wanted to offer some thoughts on empathy. @LoveSandbanks expressed it really well, describing the way she and her children differ in their expression of and understanding of empathy.

I went for an autism assessment in 2017, via my GP to the local assessment service.

There were two main difficulties for me. Firstly, there is no one alive who remembers me when I was a child. Secondly, being in my 60s meant that I had unconsciously been masking for about 60 years.

At the end of the two assessment sessions I was informed I was not autistic. The reason was they said that I had theory of mind. They acknowledged that I did have traits.

Theory of mind is when you can imagine how somebody else feels. This presumably is about empathy.

Very much upset by this non-diagnosis, I struggled along for a couple of years thinking well I must just be a weirdo then. Eventually I went to see a counsellor who specialised in women with autism.

I learnt so much about autism and about myself working with my counsellor. She explained that suggesting that autistic people lack empathy or cannot have theory of mind is an extremely outdated position. Partly it is because of the "extreme male brain" theory but also autistic people very often have a huge amount of empathy but they don't know what to do with it. They can't express it perhaps, it may overwhelm them. Autistic people can become frozen when their empathy overwhelms them. This could potentially look like callousness I suppose.

Eventually I paid privately to have a second opinion, with the national autistic society.

The assessment in 2022 was completely different to my first assessment five years earlier. At the end of the whole day of assessing, I was diagnosed with ASD (autistic spectrum disorder) and my whole life changed. I could finally accept myself for who I was and begin to stop beating myself up for all the stuff that I can't help.

Re: empathy. My DD actually gets very overwhlmed with how deeply she feels when her best friend is struggling (they are both ND) I'm also similar. Like I don't really care about myself, but hate others hurting.

Ive atttached this from my 'useful Autism screenshots album' I think it explains it quite well.

Hello @inkymoose and welcome to the thread.
What an interesting post!
Thank you for sharing that.

I also have bucketloads of empathy. I'd have been a terrible midwife if I hadn't.

This is a brilliant explanation, thanks for sharing. I identify with this very much, so much it cab be painful at times.

Just here seeking solace with people that get this struggle.
Absolutely in tears because my husband just chose this time of night to insuate that I'm lazy, wasting my life and phone addicted (yes he's right on the last one).

Been absolutely struggling with motivation to get outside recently. I've been scrolling far too much but also doing various crafts and altering my own clothing to fit better. Weather is non conductive to a nice time outdoors. Husband is physically disabled so walking alone makes me feel like I'm back in my lonely single days.

He spends all evening watching tv but critisices me for doing the same but on the phone.

I thought I made peace with just having less energy levels than the average over achiever. I used to have big dreams and ambitions but the combination of depression, anxiety/social anxiety, and now suspected autism and adhd I made my peace with being a human being rather than a "human doing". I read that the symptoms of autism get worse with age and menopause, maybe why I am feeling so frustrated with everything.

I've travelled the world and done a bunch of degrees and feel like I've achieved a lot more than some "normal" people who stay dafe in a 9-5 job. The flip side is I get bored of jobs after a couple years and change it up. It's stressful but I'd rather that than stagnate. Luckily it's more common to job change these days so it's not been an issue yet. My point being yes when I laze I laze hard but when I'm motivated I do all the shit 110%. There's no in between and I've accepted it's just who I am. I can't summon energy from nowhere.

I just had two full days of socialising and I'm exhausted. I could do without the character assissination at bedtime from husband.
It hurts that someone who is physically disabled doesn't empathise with my mental disability.
I would not have chosen this!!

As recent posters have written I am sure of being autistic but in the diagnosis limbo. My family are dead or awol. I have no paperwork from my childhood. I can't cope with the waiting lists. There's no medication so what's the point etc.

Im absolutely furious that no one noticed me struggling in school. My mother had so many mental, physical and social issues. Social services were involved but mother told them to fuck off and so they did!
When I was a toddler my speech delay was noted but nothing came of it. Went for hearing test but the nurse just said I must have selective hearing activated!!
Been called every variation of odd/weird/quirky by friends and acquaintances my whole life so I just made myself smaller and smaller and more palatable just for an easy, quiet life.
My last therapy session she wanted me list my thoughts as per CBT. I kept saying but there's so many!! I can't pick just one thought. Then the Internet tells me this constant chatter of voices 24/7 is a adhd symptom. Go figure.

Have always felt like an alien and fantasised living in the woods just to get away from people and their expectations. Haven't won the lottery to achieve this yet.

I saved this thread when it was new and I'm glad it's here to come back to this evening. ♥

You are not alone @Pepsipepsi - your frustration and feeling misunderstood whilst just being your genuine self is very moving.

I have been researching into various aspects of autism since I received my diagnosis at the age of 67. There is very interesting new research about aspects of brain function, one in particular regarding synaptic pruning interests me -I've put the link below.

https://embrace-autism.com/autism-and-disorganized-thoughts/

Another explanation of why autism is what it is is called the theory of monotropism.

https://www.bps.org.uk/psychologist/me-and-monotropism-unified-theory-autism

I find understanding these type of aspects very helpful for me in reducing my self criticism and bewilderment at the way I am.

I have put up with an unsympathetic husband in the past but in the end the relationship was damaging, and I left. that's in a nutshell – I actually put up with emotional abuse for many years. I think being autistic made me more vulnerable to unsuitable relationships, couldn't see red flags and so on.

I hope you feel a little better this morning, and I hope you will find some comfort in this space too.

@Pepsipepsi Two days of socialisation?! Sounds like my idea of hell. I would either have a full day of social hangover (exhausted and spaced out) or a full on migraine.

The phone addiction you can do something about. I find my DH does get a bit irritated if I spend a long time "not present" because I'm looking at my phone and basically ignoring him. I also get depressed and anxious and angry when I spend too much time on social media or researching stuff.
In this instance I can understand though as it sounds like you're desperately trying to calm your brain down after socialising so much! I have no good advice I'm afraid, just I do understand and sympathise.

@inkymoose just read your first link and the information about lack of synaptic pruning was really interesting (I know I've heard of this before but still). Started reading the other link straight after, it mentioned empathy and it got me thinking. While I know not all autistic people are empathetic, the ones that are seem to really feel it (often more intensely than usual) - this would be the associated pathways lighting up, surely? Apologies I probably sounds like an idiot, I'm not very scientific. And why would you know 😂 ?

@QuickFetchTheCoffee you sound like a thoughtful person. I think it is helpful to imagine all of those pathways lighting up. Even flickering. And it'll be different for everybody, different flickers, different experiences 😊

Thanks for the replies ☺ I feel a bit better this morning. Pissed off that I was falling asleep which was much needed and then I spent the rest of the night awake feeling upset and angry by his ill timed comments. And to add insult to injury he started snoring as I was finally falling asleep around 2am after calming down.
Hopefully going to get out and enjoy the sunshine today. Shame about the underlying feeling of utter exhaustion. 🙃

@Pepsipepsi just wanted to send a virtual hug this morning. That was a really shitty thing for your husband to do to you when you were falling asleep. One can only assume he was frustrated, but to choose that time was deliberately hurtful I hope you can speak to him and tell him that he made you feel like shit and that it's not on.

I think moreso when you say all he does himself is watch TV. Again, perhaps it's a frustration of his own and he's projecting.

It's rubbish when you've only just made peace with being capable of less than you'd like. I know that feeling. For me, I just cannot bear to be observed, questioned and commented on. (Therefore I don't do relationships) I think it's a very vulnerable place to be when you're coming to terms with who you now are. Menopause definitely amplified Autism. Diagnosis was for me (and others) a great relief in the form of acceptance. It enables you to move forward.

I can't stress enough how important acceptance is (of ourselves) A lot of people here have also talked of 'forgiving themselves' which I also get.

I didn't like entering Perimenopause and feeling like I was losing my mind. Talking control and finally fully understanding why I felt that was very healing.

Totally understand how it seems impossible with wait lists etc, but honestly being schrödingers Autistic sucks.

Hopefully you can chat through what happened with your therapist.

Hi. How is everyone?

There's a horribly abelist thread running at the minute about PIP. The same names keep popping up with their awfully abelist posts. One person has posted over 50 times with their 'whataboutery'. Many people have posted about the abelist attitudes and how MN are doing nothing about it. I reported the thread, highlighting individual posters and was told to report specific posts, so I did. I was then told that they didn't break talk guidelines and that I should challenge them myself (this particular poster had attacked someone for having a 'babysitter so they could go out and drink wine' when the OP was specifically talking about occasional respite care)

I give up. I really do.

@RainbowZebraWarrior I've seen a few recently. Same names, same tone, same take. It's very frustrating.
I'll have a look now...

That thread sounds horrible

@RainbowZebraWarrior
@AuDHD4Me

I cannot understand why these threads are allowed on here.

They distress me so much that I cannot read them.

There are more and more of them. It's actually horrifying that MN lets them stand.

One day they'll be outlawed. I wish that people could see that they're akin to making extreme (or even mild) racist comments.

And don't get me started on the ageist threads, while we're on the subject.