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

Thanks @JewelleryCat. I feel like I have a completely new lens through which to view my life and particularly my childhood/adolescence. It's very odd.

We did an ados assessment for ds1, fortunately dh was with me because there were so many questions that I didn't fully understand the meaning or I said "yeah, but everyone does that..." and dh is "no, no they don't' 😆
I sat in on ds2's "play assessment" and had to sit on my hands and bite my tongue. They had a load of little objects - string, lollipop stick - and had to make up a game/story using them. "What's the lollipop stick? A bridge? A path"

I was internally shouting ITS A FUCKING LOLLIPOP STICK. It was genuinely quite painful!

@Ssamjang how long did it take to be referred? I need to hand my forms back in for the adult autism service here but I'm not sure they get female autism.

How did you do right ti choose?

@LoveSandbanks (ooh I've been to sandbanks- the beach in Dorset?)

One of my mums oft trotted out stories was of a teacher who asked our class to describe what a netball post was like. Apparently they were talking about dying swans and the final petal of a flower and I kept telling him its a netball post and couldn't work out why I wasn't getting It...

Hi @ThreeBeanChilli I was looking into getting an assessment for my son and I saw this page on the PS website. I registered my interest and they contacted me not long after. They sent me a screening form and a right to choose explanation to complete and take to my GP. She checked my screening and read the letter and was happy to send the referral. It took longer than it should have done because they got my referral mixed up with my son's but once they sorted that I got an appointment really quickly. I contacted them in September 23 and had my assessment today, without the mix up it would only have taken a few weeks.

https://www.problemshared.net/right-to-choose

I think they only open their waiting list when it drops down though, I think I might have got lucky with the timing.

@Ssamjang like you, I already knew but was still shocked. It's been a real mix of emotions for me. Lots of looking back and what ifs. I've found Sarah Hendrickx book 'Women & Girls with Autism Spectrum Disorder' really helpful. Also Odd Girl Out by Laura James.

Wow ssamjung!!! I was told the waiting list here was 2 years (and I've had the forms for a year oops) . I need to properly look at this.

Child 1 is diagnosed. If we had money I'd pay for child 2 (girl,masking...school can't refer...)

I would like an autism and adhd assessment .

I was also diagnosed via Right to choose (Psychiatry UK) back in 2022 when it first opened up for Autism assessments. Back then wait times were only 2 weeks!! But then the lists grew quickly and now a lot of providers open and close their waiting lists depending on demand. I've noticed they are now not quoting timescales due to unprecedented demand. It will always be quicker than sitting on the NHS waiting list though.

@ThreeBeanChilli has nobody prompted you for return of the forms? We were nagged after two weeks when I didn't get round to doing DDs immediately (it was over Christmas)

@LoveSandbanks I had to go in the next room while DD had her play assessment. Good job really, as I'd have been the same.

I've just registered interest with that one (they say they're opening up in May)

And will look at psychiatry uk too.

No noone nagged me - maybe as it was Adult rather than for a child (I did get my daughters in SO fast but they were easier to answer. I'm so anxious about getting these questions wrong!)

The Dr did initially say they "don't do referals for self discovery" 🙄. I don't think she understood bright clever people could be disabled by lack of executive function. I think having a diagnosis yes would help me make sense of my life but also would help with applying for work above the tiny amount I get now.

Ha and yes to "but doesn't everyone do that" during the kids questionnaire...

I did ask at her final appointment about parents being diagnosed... they so should offer it as that's when I realised she was just the same as me....

Oops. Sorry. Meant to say, welcome @Ssamjang

I'd also recommend Odd Girl Out by Laura James. I've mentioned before on here that it was particularly helpful for me as I also have EDS and PoTS like her. Might be worth reading through the whole thread as you'll find a lot of experiences and similar questions post diagnosis. (I know not everyone wants to trawl through whole threads, so that might be just something I do)

I don't know if I'm a bit of an outlier, but I wasn't shocked at all by my diagnosis as, having already read up about it, I already knew beyond all doubt that I was Autistic and had written dozens of pages of examples, anecdotes and memoirs. In true Autistic fashion, I had properly made it my special interest!

'Self Discovery?'

Sake! Honestly, there's still such a lack of understanding among some medical professionals and most of the general public it's unreal. So many people think it's some sort of bleeding navel gazing exercise.

Yup. I'm on the evidence gathering stage and want All The Things. I know I'm neurodiverse and worried I'm have some idiot that thinks autistic people can't do empathy... or similar.

This is so relatable to me. I was diagnosed in 2022, aged 44. It took me about 15 months to face reading the full report and I'm still processing it all.
I am trying to unlearn toxic habits I've picked up around neurotypical superiority, and try to parent my children (esp my autistic ones) through the lense of being the adult I needed as a child. It's hard to unlearn those parenting patterns, but so healing.

I had my diagnosis done through the Lorna Wing Centre, through the DISCO assessment which is supposed to be better at picking up ASD in women and girls than the more usual ADOS. I contacted them in October 2017 and was told there was a six-month waiting list… then, just a month later, I got an email saying they’d had a cancellation and I could go the following week. I self-referred I think. It was private, but worth it. God knows when I would have been assessed had I gone the NHS route!

Ha!
I've created an online petition and stuck it on the village FB page, asking people to support us keeping our warden in the Sheltered Housing Complex.

Loads of people have signed.

Toffee I'd love to go through the lorna wing. I know they "get" women. I really don't think we could afford it but I'm anxious about going through local system and being told I'm not autistic because I can do empathy (I've heard one of the assessors say in a different context....)

I got asked about Empathy in my assessment. (Sarah Everard's story was used as an example - did I feel for her / her parents, or did I just feel concern in case that happened to my child personally) Fortunately, I'd done a lot of research, and the psychiatrist himself said the empathy thing was long debunked. Have you looked up double empathy? I think forearmed is forewarned. Both my own diagnosis and DDs proves to me that they can and do now realise that women present differently. It's just a shame we have to fight harder to be heard. (As is the case in any other heathcare issue, sadly)

Yes I completely get the double empathy and it made me so cross to overhear the assessor say this. Its made me not trust them!

Have you told anyone about your diagnosis or that you think you are autistic? The only person I have told is my husband, he knew I was being assessed and contributed as my informant.

I have some close friends who I would usually tell this kind of thing, but I'm feeling really unsure about it. I'm not very good at hiding things and usually don't see the point. But I'd worry that they may view me differently or think I was trying to get attention or something like that.

And also work...I'm in a v senior position at a small biz and I'd worry that my peers and boss might view me differently.

They probably do anyway IYSWIM.

It's likely that they view you as eccentric/ difficult/ unusual. All the words our NT colleagues often use when they refer to us.

It would be a good explanation if you told them of your diagnosis.

To be honest I don't think I am viewed as weird or difficult at work, perhaps unusual in my approach to problem solving. I put a lot of effort into presenting as friendly and approachable. We had a work event a few months ago and the next day my boss said that he'd noticed I was an introvert and he was surprised. I asked him what made him think that and he said he'd noticed that I only spoke to people I already knew. I was quite worried after that as I felt like I'd been 'spotted' and my mask had slipped.

It's tiring though, being 'on' all the time at work. What does help is most of the people I work with have English as a second language so communication tends to be direct and clear so everyone can understand. I like that a lot.