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

On the subject of AQ50...I have tried it a few times but really struggle to know how to answer the questions.

There are things - like making eye contact - that I can do now in my 50s because I have had years and years of masking and trying to act like everyone else, but when I was say 18, I found it really hard unless I knew the person well.

And other things like social occasions eg when I was a student I found certain things much easier because of alcohol, but I don't drink now and rarely go out, definitely don't go to parties. So yeah...these questions are very challenging!

Okay, so MNHQ have deleted a series of ableist comments which I reported on the thread about the autistic person who has difficulty working.

Result!

I've reported the whole "weird friend and the defunct chip shop" thread. It seems to me to not be in the spirit of MN to mock disabled people like that. Let's see what happens.

On the subject of AQ50...I have tried it a few times but really struggle to know how to answer the questions.

Ok I'm glad it's not just me. Like for example the first question:
"I prefer to do things with others rather than on my own"

Surely it depends on the thing? And who the others are? Some things I want to do on my own, other things (like travelling somewhere) I would prefer to do with my partner.

With the AQ50, I guess you're meant to do it 'unmasked'. It's been a while for me, but I'm sure it was explained to me in a 'Do you now or have you ever' way.

Totally appreciate that it's a head fuck. I think it was only when I literally wrote out my life story that I saw it all in black and white.

My answers to 'do you prefer to do things alone' was almost definitely always except with my daughter. I can't and won't have a partner. Me and my daughter both identify strongly as being loners, but that's not the case for all Autistic people, so appreciate you may not feel like that. I admit, I have a complex symptom profile.

Result, indeed.

I'm just home so I shall go and report that thread, too as it's definitely not in the spirit.

I've just done the AQ50 and got 33. I wasn't sure what this meant so did some googling and it says 15 is the average across non-autistic women and 32+ suggests a strong likelihood of ASD. I'm really in shock with that, I thought I answered quite "normally".

Also I've gone down a rabbit hole of what "eye contact" means (including scientific papers!) as it's blown my mind that people are actually looking into other people's eyes. I always thought it meant looking at their face!

Yeah, I think I had the same realisation about the eye contact.

The AQ50 usually gives a statement along with the score. So I think when I filled it in years ago, I got 36 (I had answered conservatively I'd say) and it said "significant Autistic traits" I remember watching the programme about Christine McGuiness and her children a while after and she also got the same score and had exactly the same reaction.

@Mummybearsporridge I meant to reply to your post earlier about grief. Yes, I mentioned it as part of the cycle of emotions I'm an earlier post today. For me, it took a long time for me to make my peace with myself and how limited my life is now. Although when I was younger, I did travel a lot so I don't feel I missed out entirely. I do know that it played a part in me shying away from things I loved though (I'd love to have done drama, singing etc)

I think the post diagnosis washing machine cycle goes like this (in no particular order)

Relief
Initial questioning
Confusion
Guilt
Anger
Grief
Reticence
Acceptance
Readjustment
More acceptance
Forgiveness
More readjustment
Contentment
Final complete acceptance (an ongoing process, really)

ETA Forgiveness (important)

Had my assessment on Wednesday I have no idea how I did, the ADOS 2 tasks were weird because they felt like they were for children. They also asked if they could screen me for ADHD and asked if I had dyspraxia based on how clumsy I was as a child and still am. I said no. Really not sure what the outcome will be but I need answers on why I am the way I am at 41 years old.

There's such a massive difference in screening between different providers. I was assessed by Psychiatry UK and didn't complete any tasks. It was noted that I was likely dyspraxic based on information I'd provided and my GP was asked to refer, but it's not available here on NHS any more. Also, I found out straight away what the result of my assessment was.

Do you know how long you have to wait for your result / report?

@RainbowZebraWarrior

I went to my GP in April so waited around 8 months. I thought I would have to wait longer as I kept getting emails that it was a 3 year wait but they out sourced me to a local company that deals specifically with those who have mental health and asd issues, I'm currently diagnosed with depression with psychosis, severe anxiety and social phobia and avoidant personality disorder.

I never would of thought I might have autism until my mum mentioned a lot of the autistic children she works with reminded her of me and a friend from my teen years asking if I was when we reconnected on instagram as her children are also autistic and she said they reminded her of me and I was like oh lol.

I'm glad I had the ADOS 2 test (even though the tasks were weird to me as an adult) and then the clinical interview. My assessment was 3 hours long and then they called my mum the next day and did an hour long talk with her where she said they asked her everything about me.

The place that I had my assessment don't do ADHD assessments so if that's recommended in my diagnostic report I'll prob be waiting 5 years for an assessment.

Do you think they would have bothered calling my mum if I scored low on the ADOS and didn't think I was autistic? Maybe I'm just over thinking things lol.

@RainbowZebraWarrior Forgot to add they told me I will know in 4 weeks. Hoping it's sooner tbh

I got my results on the day but I am in Ireland and you can only go private here. Its 1000euro for the assessment so I was given 'result' on the day and then a psychiatrists meeting some weeks later afterwards to digest what you have learned and to discuss tools and medications.

@Psychoticbreak Did you do the ADOS 2 tasks? And for 1000€ I would want my results the same day as well lol. Sucks I have to wait 4 weeks but it did say on my original letter the whole process could take 8-12 weeks.

Hope it's sooner than 4 weeks for you too. Nothing worse than waiting. My assessment was just over 3 hours and they had my mum's info given before hand (paper based) I'd say they probably go through the whole process regardless and then look at all the info together.

I only waited about 9 weeks as they had just started outsourcing. I think ADHD assessments are still being done via right to choose, although the waiting lists keep opening and closing with various providers.

@RainbowZebraWarrior My mum filled out a form before hand and they said to me at the end they may not need to call her but called her as soon as I left to book her in for a phone conversation the next day. Seems pointless to do that if I didn't score high enough on the ADOS but what do I know.

I don't know how some who had theirs done with psychiatry uk get told after immediately a 60 minute interview. I would have loved that lol because the wait is stressing me out.

I dont recognise the name but I had to do some tick box stuff and it took ages if that helps and then the 2 hour meeting with psychotherapist and another hour a month later with psychiatrist. Its actually exhausting but more in an 'I am now properly exhaling' kind of way when it is done. I am starting to breathe again if that makes sense.

I’m not diagnosed or going to get diagnosed but my daughter has just been confirmed asd so now I’m naturally wondering about myself. I was chronically shy as a child and still feel very socially awkward but have learned how to appear more confident than I am. I also need to twiddle a pen or something in order to concentrate. Not sure if these are signs of neurodivergence or not so watching this thread with interest.

Hello! I never knew this existed. I'm autistic single parent with three autistic sons. I'd like to join. Although I feel a bit over whelmed at the moment and may not always talk. But I'll be here, sometimes just reading

This took me ages to realise but yes, they seem to mean you should actually be staring right into people's eyes most of the time you are talking to them. I find it so intrusive and then can't think about what I'm saying if people are boring holes into your eyeballs with their laser beams. 🤣 I can force myself to do it on and off but it's completely exhausting and takes so much effort to maintain to the extent NT people want you to do it throughout a conversation that I end up not being able to express myself as clearly/ mind going blank or losing my train of thought completely.

So nice to see so many new posters and others from previous threads checking in. Had no time today but will catch up properly and read the thread properly at some point!

@camelCase I'd been wondering how you are. Sorry to hear you're still suffering total burnout. 😔

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

I can't remember if I shared this here before, but this sort of things happens... 🙄🤦🏻‍♀️🤣

https://www.tiktok.com/@danpearceknowsnothingg*/video/7141371844048899374?t=8W3ssJLqlEM&&_r=1

I have disturbingly large collections of beach towels (?!), pens, perfumes, paperweights, semi-precious stones... and don't even get me started on the lego shop: that seems to be trying to bankrupt me. 😬🤯

I have an impressive collection of jumpers from many suppliers.

I've even hidden some of them so DH doesn't realise.

🤣🤣

Tbf he wouldn't care or tell me off but he'd be surprised.

@Psychoticbreak

I had to do actual tasks like put a puzzle together, narrate a book, make a story up out of random objects and demonstrate how to brush my teeth along with answering some very weird questions where I think I managed to mention my cats at every opportunity 😅 . All that took over an hour then I had the clinical interview with the psychologist who was observing me during the first part. In total the assessment including the random break took 3 hours. I did all the form filling during my pre screening stage.