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

Please can I join?

i don’t have a diagnosis buy fairly certain I am ND (I suspect autistic, adhd and DCD (aka dyspraxia). I have two girls. a 7 year old who is ASD and DCD (and I think adhd too) and my youngest daughter is 5 and ASD with a pda profile and adhd.

I’d like to write more but I’m very tired. I read through a lot of this thread the other day and found it so comforting.

my two best (only remaining!) friends from university also have ND kids and are also now thinking they are likely ND. I struggle to make lasting new friends but one of my new local friends is autistic and I find her so much easier to get on with than anyone else.

I want to pursue diagnosis but I’m struggling to proceed. I get very stuck with big tasks. My childhood was pretty shit and I don’t know who is best place to unpick all that. What’s trauma and what’s neurological? Would the nhs do that?

I’m finding life hard at the moment. My children are lovely but their needs are complex.

Sorry this is a bit of a ramble. I wanted to place mark really to not lose the thread.

Hello and welcome, @Getoutgetout

Hi and welcome to the thread.

This bit of your post jumped out at me:

Well for one thing I'm not sure I'd get one - my husband has been saying for years he reckons I'm on the spectrum but possibly not "enough" to get a diagnosis.

There's no 'not enough'. You're either autistic or you aren't.

The other thing I picked up on, while you might be okay at work now, nothing remains static, and apart from us all dying which is a definite, you could change your job, have a new manager, work in a new team, and there is no guarantee that others will understand you or that accommodations (reasonable adjustments) will be made for you. Also, whilst the waiting lists are long, it doesn't mean that no one gets an assessment or a diagnosis.

I toyed with posting this last bit, but being an honest, forthright person, I will say that whilst people may feel they're a bit autistic, but not enough for a diagnosis, comments like that could be seen by some as 'offensive'.

It's not offensive to me, but I don't believe in self identification of anything. Self identification being what people describe as self diagnosis, which is the wrong terminology because, of course, we're not qualified to diagnose ourselves.

Hello and welcome @Getoutgetout

This bit of your post:

I want to pursue diagnosis but I’m struggling to proceed. I get very stuck with big tasks. My childhood was pretty shit and I don’t know who is best place to unpick all that. What’s trauma and what’s neurological? Would the nhs do that?

The NHS can and do identify what is trauma and what is neuro-divergence.

I have a diagnosis of autism and ADHD. The autism diagnosis was way before the ADHD assessment and diagnosis. During both assessments, my childhood and adult traumas were discussed (I have had extensive therapy and EMDR for childhood abuse/trauma and traumas from young adulthood).

I suggest speaking with your GP about the assessment process for autism and ADHD and do the AQ50 test before you see your GP and make some notes before you go to the appointment. A step on the referral ladder is better than just thinking about it.

I have come across countless people who wish they'd pursued an assessment earlier because for so many of us, a diagnosis gives us a better understanding of who we are, and we are kinder to ourselves.

There's no 'not enough'. You're either autistic or you aren't

Actually I was going to post this, but couldn't think of a good way to word it.

I'm so anxious on MN because I get banned every so often, for saying things which seem fine to me, but apparently aren't.
🤣

Thanks @Clarice99 thats really good to know. my childhood traumas aren’t in my medical records but hopefully would be picked up anyway.

Ive looked at the AQ50 many times but find it very hard to fill in. Like I liked parties in my twenties when I drank a lot. Now I would dread a party. I’m not sure if I notice “strings of information”. I’m not sure if I have a problem with eye contact. I can look people in the eye but then look away and take breaks. But everyone would do that I think? I can’t believe NT people don’t break eye contact.

But maybe I’ll try to make notes like this and then discuss with the GP.

i’ll make the appointment

It's an absolute fucking disgrace that you're banned for essentially being autistic. We cannot communicate in any other way and to expect that is fucking ableism 😬😬😬

Apologies for swearing @TheShellBeach but the double standards on this forum really piss me off. It's okay for people to have a pop at autistic people time and time again, but when we behave in the only way we know how, we're penalised. FFS!

@Getoutgetout my childhood traumas weren't on my medical records either. As a child of the 60's and 70's, no one gave a shit when I turned up at school with black eyes, bruises all over, a fractured arm, no coat or jacket in winter etc etc etc.

Try not to overthink it. A lot of people, NT and ND keep things 'locked up tightly', but that doesn't mean we can't access any services when we need to.

The AQ50 test can be a bit odd. Sometimes the questions don't fit our lives, also, autistic women (and some men) are so great at masking we'd put Oscar winning actors/actresses to shame 😁 If you struggle to answer some of the questions, try and reframe the question to something that does apply to your life.

FWIW, my score on the AQ50 is consistently high, between 44-46. My autistic behaviours are very obvious to most people, more so post diagnosis (which was around 10 years ago) because now, I don't care what other people think of me. I can and do make eye contact. I 'read' people that way. But just because I do make eye contact, doesn't mean I find it easy.

I hope your GP is understanding and open to referring you and don't be put off if you get turned away the first time. Just go away, do more reading and return armed with more info 😎

Oh I agree 100%.

I have pointed out to MNHQ that I'm autistic and that I say things which seem fine to me, but which are not fine according to them. I'm very, very literal.

Also, I can't always abandon a thread when it might be safer to do so. I have to have the last word. Lololol. So I end up saying something which turns out to be against the TGs.

I'm really sorry, but if you're not sure you'd get a diagnosis, then I have to question why. I get that you've explained that it's a difficult road (Lord knows, we all know about that here) but if you're also not sure if it would benefit you, then you need to understand more about what it is to be Autistic and how difficult, nay virtually impossible it is in a Neurotypical world.

Unlike many areas of MN, this thread is not a race to the bottom. It is, however, a place where we share how much we struggle, how we are barely accepted by society, how difficult it is to fit in and how we have repeatedly been subjected to prejudice, wrong diagnoses and worse.

In the opening post, we welcome those who are undiagnosed. That is absolutely true. We welcome people with open arms. I'll be honest, I advance searched you (it's what I do - I'm Autistic) I don't see anything that makes me feel that you're disingenuous. I believe you feel you may be Autistic. That's absolutely fine. But please bear in mind that we are wary of those who self diagnose and have many friends who also self diagnose. It can and does undermine the condition, and therefore, our lived experiences.

All I'm asking is that if you join our thread and you truly believe you are Neurodivergent, then be respectful of how much we struggle. For us, going forward for assessment (and our children, too in many cases) was not an actual choice. We were falling apart.

Feel free to join in with the conversation, but note that most of us don't tend to use laughing emojis and "Haha" very much.

Sorry. I've been blunt. As Clarice and Shell have both already said, we get suspicious and defensive. We are, after all, Autistic. It was the reason I questioned last night why you weren't seeking diagnosis.

I've probably pissed you off. I'm sorry. But something didn't sit quite right with me.

Awareness and mutual understanding is everything.

@Everythingwinniethepooh

You cannot be a bit autistic.
You're either autistic or NT.

Please seek a diagnosis if you think you're autistic. I found that my diagnosis has helped me to make sense of my whole life.

What I mean is that if you don't think you'd get a diagnosis @Everythingwinniethepooh then you need to take the AQ50 for starters. Go from there.
But we who are diagnosed have enough trouble on MN with posters who say "we're all a bit autistic" and we have to challenge that viewpoint all the time.

This thread is our safe space, away from all that.

Oh gosh. I'm so sorry, I truly didn't want to upset/offend anyone. I'm such an overthinker that I tried to stop myself overthinking my previous post and just send it...which has clearly backfired spectacularly 🤦 So now I'm at the other end of the scale where I started writing a response and hour and a half ago and here I am starting again because it got so long!

Ok. So re: @Clarice99 first response. Either I'm autistic or I'm not. Fair enough. I think I'm autistic, but as you say, I can't know that for sure because I'm not an expert, I cannot diagnose myself. My husband, as a diagnosed autistic, his personal opinion as someone who knows me well, is that he isn't sure I would score highly enough on the diagnostic criteria to be diagnosed as autistic - but that could well be more a reflection on the way the criteria is applied, especially to women, rather than on whether I actually am or aren't autistic. Hope that makes more sense and apologies for not saying it properly the first time. Re: work - yes you're right, things could change, and I will consider what you have said on that, thank you.

@RainbowZebraWarrior re: your post. In all honesty I do feel some imposter syndrome in that I do not think I have struggles on the level that you guys do. I have read through a fair bit of the thread and there are some horrific circumstances and difficult things going on, I just didn't feel I was best placed to start commenting on those when the conversation had moved on. But that doesn't mean I don't feel immense sympathy and care for said difficult situations.

My use of emojis and "haha" I suspect is similar to my nervous laugh when I communicate in person - it could even be a form of masking to be honest. It's me trying desperately to communicate well and not be misunderstood, because in the past I've had experiences where I've been in a place for a matter of months, thought it all going swimmingly, then been informed that those around me thought me patronising and aloof. Sometimes because I didn't do things like offering cups of tea (I don't drink tea or coffee myself so it just doesn't occur to me to offer, but this came across as rude and I had no idea...). I have many small issues like this, which in adding them up over the last few years as I've deep dived into researching autism, I've concluded I'm probably autistic, as so many things seem to make more sense if that is the case!

Re: friends self diagnosing. Again I've communicated that badly. They are all considering going for diagnosis themselves, they just reached out to me as someone who they could chat to about it. They too are asking me why I'm not going for diagnosis myself.

@TheShellBeach I have completed the AQ50 as you asked. I got 35, which it says is just within the range for significant autistic traits. To me, that means I am borderline so might not get a diagnosis? But as the conversation has been saying above, the questions are really quite difficult to understand and answer accurately. And I am someone who stresses about getting things wrong, not being 100% truthful and accurate etc, so that whole process sounds really hard. Right now I am at a good stage in my life - I am on maternity leave with my little IVF miracle after a tough few years getting to this point. I am in a fortunate position in life, and I certainly don't want to minimise the difficulties autism causes, but just for me personally, right now, seeking diagnosis doesn't seem like the right step. I'm not ruling it out forever, I'm just...not sure the stress it would cost me would be worth it right now if I can put things in place to manage any difficulties without it.

I really, really hope this helps explain myself better, but if anyone would rather I not be on here, I will of course depart. I don't want to invade anyone's safe space or cause harm etc. Thank you for being clear and blunt with me - I do agree (and hope!) it makes it much easier to clear up any misunderstandings.

Hello @Everythingwinniethepooh ,

Your interest in joining the group, and your questions and answers indicate a wish to be accepted and understood. Your lengthy replies are interesting both in their content, attention to detail, and length.

I had a look at the AQ50 after reading your post and I found this:

The AQ doesn’t really offer much insight into specific autistic traits, as it only outputs a single score. Any scores of 26 or greater indicate the presence of autistic traits; the higher the score, the more autistic traits you have.
Furthermore, 79.3% of autistic people score 32 or higher (whereas only 2% of controls do), so scores of 32 and above are particularly significant. The AQ is particularly sensitive in distinguishing between autistic and non-autistic adult females, as 92.3% of autistic females scored 32 or higher (compared to 1% of the control group).[9]
Do note that no single test is conclusive, and not every autistic person necessarily scores above the defined threshold on each test. If you score low on the AQ but still think you could be autistic, try taking a few other autism tests. - from embrace-autism.com.

Sounds to me from what you've written that you are autistic. I know that's a bold thing to say, given the small amount of evidence - but your score of 35 is not "just within the range" but rather, particularly significant.

I found the AQ50 difficult to complete when I tried it at first. I overthink responses and question whether I'm being truthful. But it's a good place to start.

I had the same kind of response from my daughter as you had from your husband when I first wanted to go for an assessment (about 8 or 9 years ago, I think) - because she had an MA in teaching autistic children - but then she went away and did lots of research on women and autism, and changed her mind. Since then, I had a misdiagnosis and then a diagnosis 5 years after that. I now recognise that there are a lot of people in my family who are autistic. It's been illuminating.

Hello. I've not been on this thread for ages but came on when I was looking St diagnosis (got my first call with the GP to ask about right to choose this week - they book about 5weeks in advance! I'm considering private but no money.. )

I want to ask you guys about work. I've been working fairly part time but very unpredictable hours with the session I run and I'm not coping with the lack of stability (different sessions, different locations and not in my control) although I like the work.

I've applied for another job and got interviews next week but...

**I'm obsessively thinking whether it's right or not. I can't imagine doing a job until I'm in it which has led to fear of leaving mine as although it's exhausting it's what I know.

**I can't work out if I could work more hours or not. It's only 1 day wfh and in my ideal world (which I don't have lots of jobs to choose from) that might be too much.

Not sure what I'm asking really but whether people find changing job hard and how much they find it affects them in work with exhaustion and overwhelm and how you've made it work for you?

I'm terrified to go to the interview and get it wrong if I can't answer the questions as I don't do the job.

And we need more money but is fulltime too much (possibly)

Hi again,

I’ve been making notes for the GP re getting a referral. Is this enough to get a referral do you think? This is just from a 5 min brainstorm so there may be more. Thanks

1. sensory sensitivity to light and smells. I get instant headaches.
2. i tell the same story over and over
3. i overly explain / give too much detail. This is a desire to be truthful.
4. i empathise by sharing my own experiences
5. I have deep interests which last a few months it sometimes longer but then I get bored and they change
6. clumsy. I bang into walls and door frames. Terrible handwriting all my life. Rubbish at things like bowling, ice skating. Ok at running any cycling. Drop things a lot.
7. struggle a little with recognising people especially out of context. Really struggle to tell similar looking characters apart in films/tv
8. sometimes I get anxious about talking to others eg I will go another route to avoid a perfectly nice neighbour
9. either I get loads done and am really productive or o struggle to start bigger jobs eg getting curtains for a room
10. overly blunt. I just say what I think even in work situations and can’t “play the game”.
11. play with my hair all the time (driving DH mad!)
12. drift off in conversations and struggle to focus on what was said
13. i can be very controlling and get very upset if my plans get upset
14. did really well academically but have failed to apply this in a work situation and feel never fulfilled my potential

Just remember that the interview itself is only the start. You'll find out much more when you get there about the role, and afterwards, you'll have time to reflect on whether you think it's right for you.

You can also look at how flexible the company is with reasonable adjustments. If there's no reason why you couldn't work from home more, then it's perfectly fine to request this. You don't actually have to disclose, but along the lines of you starting how you do your best work and are most productive. If they won't even consider it, then you'll know it's not the right fit for you.

I'd say that's plenty. 😊

My Friday slight rant.

Have discovered today that my lack of productivity, for which I was about to be put on a DAP for, is due to my manager not being clear in the brief and expectations. So, 6 weeks of me losing the will to live is all on them. This isn't the first time.

To give them their due, they've sincerely apologised and are now going to include me in the project planning meetings but this cannot happen again as it doesn't show me in a good light, and I'm actually fucking really good at my job.

There's now no DAP as I was very clear in my feelings about that and the lack of clarity. They've also taken responsibility for it, but it has caused me a lot of stress and anxiety needlessly. I just wish that people would listen to me in the first fucking place!

Moving forward, I think they'll really take note of my support needs. I think because I present as really capable, which I am, they forget that there are areas where I do need a little more help.

Mable, trying to change the workforce culture one manager at a time...

@Getoutgetout that list sounds enough to me.

@Mabelface what is a DAP?

Thanks @Mabelface and @TheShellBeach I forgot to add my over sharing which I can’t stop doing. To me it’s just being friendly and open but now I’m starting to think others must see me as deeply inappropriate.

i’ve gone through life picking up one or two friends in different situations but never been in those groups of people you see.

my eldest was diagnosed when she was 4 but i
knew from when she was 2.5. I was so ignorant back then.

I really struggle with oversharing. I mean not to do it and it still happens.

Oh, me too.

If there is anything better left unsaid, Shell Beach blurts it out.

Sometimes, afterwards, I say to myself "What the hell were you thinking?" and I SMH in despair. And occasionally laughter.

DH and DS1 can get my attention and I can tell by their faces that I've gone too far.

Mind you, DS1 is a bugger for oversharing himself.

Me too @ThreeBeanChilli I think it’s also cos I find making conversation difficult but talking about my own experiences/life is easy. I guess that’s also why I prefer to have a few close friends as I can’t over share then cos friends do share. It’s the people I don’t know well I need to stop doing it with.

Mind you, DS1 is a bugger for oversharing himself

As is DS2 on occasion.

One of our DDs is also autistic, but she's an oyster. Unless she's had too much to drink.