Autistic women assemble! #4

[RainbowZebraWarrior]

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:

Thread 3:

https://www.mumsnet.com/talk/_chat/4979068-autistic-women-assemble-3?reply=136877684

Thread 2:

www.mumsnet.com/talk/_chat/4865805-autistic-women-assemble-2

Thread 1:

https://www.mumsnet.com/talk/_chat/4777843-autistic-women-assemble

@Nellieinthebarn I’m the same, the heat has been unbearable for me as well. Fans on all the time, sticky as well which is awful but yes, easy dinners are always good

We're on holiday.
We've gone from the middle of nowhere in Scotland to a different middle of nowhere, elsewhere in Scotland.

And no, it isn't too hot here.

You are lucky @TheShellBeach! My favourite weather is blanket weather. Is it blanket weather for you?

Oh my, the heat. I cannot bear the feeling of sweating. Walking back from the train today with the baby was unbearable. I got us both inside and if I'd be alone, I'd absolutely have allowed my meltdown out (cry, rage, probably crack a tea towel on the wall to let my anger out!!). But I don't do any of this in front of the baby. This heat makes me rage, and I've nobody to direct it at (apart from Shell, British Gas, The Tories lol). I can honestly see a future if I'm lucky enough to get to old age, somewhere that never gets too hot. Scotland indeed! Being too hot for me is such an overwhelm I can hardly survive. I can feel myself shutting down and my sanity slipping away from me. It is truly upsetting. Cold, however uncomfortable - is never like this.

Well not quite, but it is pleasantly warm.

Am I allowed to participate?

I was diagnosed with OCD in my 30s. One younger member of my family got a formal diagnosis of Asperger's (as it was then called) a few years after that.

A health professional (not a doctor) suggested last year that I have ASD and ADHD (which would fit for many reasons). I asked my GP. She laughed and said "What's normal?"

I'm 64. I've had difficulty making eye contact all my life, hyper focus at times but organise badly at other times. Did well at school and at work; less well in my personal life. I got good at faking eye contact at work.

Either seem to clam up or talk too much. The health professional who suggested ADHD said that she'd been struck by the way that I "go off at a tangent"...I also have a tendency to proffer far too much info.

Anyway, I only have the formal diagnosis of OCD so if it's not appropriate for me to be here, I'll understand.

Hello @WearyAuldWumman and welcome to the thread.
I'm about the same age as you and had a late diagnosis (after 60).

The health professional who suggested ADHD said that she'd been struck by the way that I "go off at a tangent"...I also have a tendency to proffer far too much info.

Yes, most of us on the thread relate to that @WearyAuldWumman

I'm a perpetual over sharer, generally of useless information.

Thank you - that's very much appreciated.

I phoned an older cousin after I spoke to my GP. She laughed and told me to watch the documentaries about autism on iPlayer, particularly those about women masking.

It all seemed to fit.

Joining 👌🏾

I’d take pleasantly warm instead of this sticky and humid feeling

I have a question re PIP, and those who've managed to get it.

I applied when I was first diagnosed and scored 0 in everything. I've helped people apply for PIP and have done well with this, so couldn't understand.

I know you are eligible even if you work, but maybe they felt I wasn't suitable as I do all of the things that people perceive as 'high functioning' such as work full time, have a child, studying at post grad level.

Was anyone in a similar position?

Also, lovely to be here and recognise so much of myself amongst you.

I get PIP (not much, just standard mobility) and I'm functionally housebound due to ME/CFS with significant fatigue related care needs, cannot drive and am only able to work an hour or so a month. I'm getting assessed for ADHD and Autism but as I hadn't started this pathway at the time of my initial application I couldn't "prove" my struggles with executive function and burnout.
IME PIP assessors generally don't understand fatigue related care needs, and took my stress-related masking in the assessment and appeal as evidence that I don't struggle to communicate in everyday interactions.
I love it when things work by a clear rule, but PIP has rules within rules.
They ask if you struggle to read and understand text, then they have a secret rule that says it doesn't actually mean that, it means can you interpret one sentence of your first language. Nowhere does it say this on the 30 page form you must complete to claim PIP. If you can't read a sentence how can you understand the form? If you can't understand the form how can you say it's your claim? I got caught in overthinking that logic loop for days.
They ask if you can prepare a meal at a hob from fresh ingredients as often as necessary but they then ask if you eat something, anything, every day. I answered yes as I have a bagel for breakfast, the same breakfast, every day. I don't see how that counts as preparing a meal from fresh ingredients and they seemed hung up on the dexterity and strength to chop vegetables.
I said (backed up by DH's carer statement) I cannot wash at all most days. They said as I can make a cup of tea I can run a cloth over my face. The washing questions were mostly about reaching to wash rather than motivation and fatigue. I am hypermobile but find showers overwhelming and baths exhausting. This doesn't fit their rules somehow.
I have come to the conclusion that I'll need CAB help to explain my needs in a way that fits the PIP system, I don't think it's possible without professional input.

This is where you'll get the very best help on applying for PIP www.benefitsandwork.co.uk

I am on the NHS waiting list for autism assessment, we are keen to get my daughter assessed but, obviously, waiting lists here in NI are years and years long. We decided to go privately (still had to wait 5 months) and she now has an appointment date for the end of this month.

Does anyone have real life experience of (potential) private diagnosis vs NHS diagnosis? I know there is sometimes a query over educational establishments giving private diagnosis the same weight as an NHS one, however the private clinic has assured us that it is a multidisciplinary assessment and all done in accordance with NICE guidelines, and that they provide assessments to the NHS too. The SENCo at my daughter's primary school has also reassured us that it would be considered equally valid.

Grateful for any feedback on this!

Hi everyone, this seems like an interesting topic! I am autistic, diagnosed aged 10 and am now 31.

The things I struggle the most with are work (I cannot hold down a job) friendships (I cannot maintain friendships) and major anxiety/OCD. I am a mum to one DD who I adore and spending time with her is everything to me, I also have a husband who I also enjoy spending time with but I'm not very affectionate towards him, luckily he understands and isn't that romantically touchy anyway.

Hello! Just wanted to say hi, I got my official diagnosis recently after years of wondering. So nice to meet you all x

Welcome everyone 🙂 @Enchantedlilypad a lot of us struggle with friendships which is why it’s great we have this space just for us. There is also a Neurodiverse Mumsnetters topic I think it’s called but doesn’t get as much traffic

I got my Autism and ADHD forms from Problemshared via Right to Choose.
I'm pretty stuck on the childhood history bits as it was a long time ago and my mum can't find my school reports in the chaos pit they call home. (Mum has a lot of ADHD and autistic traits but won't seek a diagnosis)
I've left a few bits blank as nobody can remember stuff like when I toilet trained or slept through.
Will I get denied for an incomplete form?

@InMySpareTime thank you for that. It seems like a headache and I know it is intentionally awful. I've seen how gruelling it is for those who go through the interview process.

deep breath
Hi everyone. Been following the threads for quite some time now. I’m at the “self identifying” stage right now. I’m going to try get the ball rolling with official diagnosis soon.
I have DD2 with an ASD diagnosis, and my DH and DD1 are on the ADHD pathway. Our home is far from “normal” but we get by.
I feel like I’m burning through jobs at the moment, I can’t find anywhere where I “fit”. I walked out of one job because I couldn’t cope with the criticism of my behaviours.
I’ve just lost my most recent job because I’m not an exact match to what the expectations of the role are - who is after 14 weeks?
I don’t have any point to this post really. I’m 47 and my world seems ever more complicated!
I feel bad just watching the thread so thought it better to at least reveal myself!

Hello and welcome

Sorry to hear you're having such a tough time. Was the criticism constructive? The 14 week period sounds as though it was 'probationary' hence them letting you go at that time; however, it would have been good practice on their part to meet with you throughout the 14 week period to talk about your performance in a constructive way to allow you to make changes, if required.

Have you ever self-referred to Access to Work for an assessment? If not, when you have a new job, I would recommend doing this (although I'm not sure of the DWP/ATW stance on self-ID).

A lot of people don't have a complete childhood history, nor do they have living parents/available parents for various reasons to complete the form and/or attend an assessment.

At the time of my assessment(s), one parent was dead and I'm NC with the other one, so I had zero parental input. It didn't stop my assessment going ahead.

Good luck with the assessment going ahead.

Thank you for the support the criticism was not constructive at all, I’ve had four 121s with this manager, who has just experienced an effective demotion. I had no objectives set and no verbal guidance on the job role. All I had to work on was the job description.
I was hired by his predecessor, who was also demoted as part of the (incredibly weird) process. His predecessor was my manager for around two months and I had one “welcome coffee” with him.
The recruitment process was skills based, I have all the skills to do the role, there’s nothing there that I haven’t done in the past, I simply haven’t carried out that particular, exact role before.
The 121s I’ve had with the “new” manager have been incredibly uncomfortable, an off the cuff comment by me lead to him thinking I couldn’t use a basic piece of software.
We had a “case conference” on Friday, which was basically me vs him and HR.
I went to the GP on Monday and they’ve issued me with a sick note for now, and we’re going to go ahead with the assessment pathway for autism, which I’m expecting to be tough, but hopefully productive. It wouldn’t have helped with this role at all - my manager wasn’t aware that he could even access OH reports (despite my having been open and honest with OH pre-employment, and having given my permission for disclosure- as I have other health issues).