Autistic women assemble!

[Nepmarthiturn]

...only if and when you're not feeling antisocial and want the entire world to +%$¥ off, or course. 😉😆

A few of us were talking on another thread and thought it would be nice to have a support/ chat thread on here to share interests/ challenges/ parenting issues or whatever we feel like. A little community of autistic women on here that we can dip in and out of but will be supportive and friendly and people who actually get it.

Might also be a nice counterbalance to all of the horrific posts about autism that we find here so regularly!!

P.S. Have deliberately posted this in chat rather than in the ND Mumsnetters topic because it will hopefully reach more people who would like to join in. I didn't even realise that section existed for a long time and often miss threads there as they don't show in active and expect I'm not alone in that. However, in posting this here, we will be relying on the people with obnoxious and ignorant views about autism who so regularly post on Mumsnet, to demonstrate to us their allegedly superior empathy (ha!) and please just leave this thread alone: it's not for you. Many thanks!!

It's been an intense (but lovely) day here. We went to the big model railway exhibition in our nearest city (which meant I didn't sleep last night because I was stressing about whether I'd be able to park the car) and DS1 had the best time. There were a lot of people, and that really oppressive, echoey crowd noise, so I found it all a bit overwhelming, but I'm so glad we went.

DS2 (9) has decided that this holiday is when he'll punch his dyspraxia in the face (his words) and learn to ride his bike. He's been out in the garden since we got home falling and getting up over and over. I'm so proud of him for keeping on getting up.

I'm exhausted, but am happily curled up on the sofa with the cats, eating chocolate and watching Star Trek. DH is off tomorrow, so I'm hoping we can have a quiet family day at home!

I keep coming back to the thread and trying to catch up on it! Hope you’ve all had a lovely day! Ours has been lovely, we had a nice walk this morning with the kids, through the woods!
It was so lovely and peaceful, helps me to get outside when I’m anxious, which is most days to be honest!
Did an Easter egg hunt with the kids and played with them in the garden!
My dc has autism too, he’s been officially diagnosed but I haven’t, he gets so anxious too! I guess it’s good in a way that I know how he feels, he’s so like me in many many ways, and his diagnosis was the light bulb moment for me!
Hes gone to bed really down tonight that Easter is over now, even though I did explain that tomorrow is Easter Monday, and there’s more fun to be had… he sees it as just the one day in his mind.

Roast goose is lovely — both mouthfuls are delicious.

Hello @ConstructionTime and @LuluTaylor 😊

@Furries your roast looks yummy! The goose was also delicious. Bit mouthfuls of it as @JarByTheDoor said. 🤣 And your tulips are stunning! I am getting impatient for more of mine to open.

Wow @TheShellBeach you must have some serious cleaning skills! Very disappointing about the chips though. I do want to at least give mine a go because I do lots of slow cooking for batch cooking and it does pressure cooking so will speed that up. But also want crispy chicken, chips etc so will be annoyed if it doesn't work! Just don't have the headspace atm to figure out how it works. 🫣

Wow @CaptainCallisto your DS sounds really determined! That's brilliant. And sounds like a lovely lazy evening.

@Misspacorabanne that also sounds like a lovely day. Sorry your DS is sad. With luck tomorrow he'll soon change his mind and enjoy himself.

We finally got home not long ago. Fortunately traffic was kind so the journey was ok. Littlest has just been up saying she has a tummy ache but I think it's just too much goose and chocolate and ice cream! 🤞

Still need to unpack the car but am having a glass of wine first. Looking forward to a lazy day tomorrow, we have no plans except unpacking etc. Hoping forecast is wrong and the sunshine stays!

Sorry, I meant both mouthfuls.

Can I join, I've been on Mumsnet for years. I had no idea I could be autistic until the mental health team told me last year. I'm waiting for the assessment, it should be soon. I'm really lonely and isolated at the moment and thinking too much about things. I'm really upset with my GP and thinking of leaving them and having no GP as a kind of protest at how rubbish they are. Would this be mad. Also hate the mental health team and their patronising mindfulness therapy. Sorry if this is too much for a first post.

Hi @Sandybabey , you are very welcome here. 😊

I'm sorry to hear you're having such a hard time. GPs seem to be pot luck, some great and some so awful. They must have been dreadful to be making you consider leaving yourself without one at all (I take it all local practices are full so you can't join a different one?). But that could be such a problem because you can't see many specialists or get medication etc with no GP. Would it be possible to try a different GP at the same practice?

Mental health services are dire. They won't seem to see anybody unless they are suicidal and often don't do much even then. They've also refused to see various autistic people I know at all because they don't have the specialists trained to do autism informed therapy. And there's evidence that CBT can be ineffective or even harmful for lots of autistic people, and mindfulness often doesn't work for many of us. It's dreadful and so wrong to make people fight to get any support when they're struggling already.

I hope being on the thread here helps in some small way.

Thank you@Nepmarthiturn, the reason I'm upset with GP is that they failed to send my Ds' s assessment and I only found about this a couple of weeks ago. So a five month delay for him. So worried about him as he is like me but more so. I'm just so sick of the NHS, so many bad experiences and being let down. The therapy is some kind of DBT/mindfulness mishmash. I'm enjoying reading the posts.

I'm 48 and only realised I'm autistic a couple of years ago, it explained a lot! I have a question if no one minds about whether my experience with education was typical for the time? Very studious through primary (although I did struggle socially at school) and for the first year or so in senior school, then complete overwhelm resulting in very poor attendance and behaviour, eventually leaving at 15 with no GCSE's. Nothing was ever picked up at school and I masked pretty well but looking back it was glaringly obvious, just wondered how many older autistic women had a similar experience?

That's so unacceptable! As if the waits aren't long enough already. Can you make a formal complaint to the GP practice and demand that they contact the assessment team to explain that the delay in referral was entirely their error and request that his referral be put in the appropriate place in the waiting list that it should have been? No idea if that would work but maybe worth a go? How stressful for you. 😔

I managed to get through school and get qualifications but it was absolute hell and caused serious mental health damage. I think stories like yours are very common though. Many, many autistic women have mental health breakdowns in teens/ early 20s without diagnosis and support as social relationships and demands of education become too overwhelming to manage. I think back then there was so little understanding of autism that diagnosis was rare, even for boys. As girls we stood no chance whatsoever.

It's funny, I instinctively knew DD wouldn't cope with school, even when she was little and I hadn't realised she was autistic, let alone myself. I home educated her from the outset and genuinely had no idea til she was about 10 because she exhibited none of the 'typical' signs, although of course I now know that's because girls present so differently. Embarrassingly she had to tell me she thought she might be autistic and we've spent the last four years on a bit of a journey of discovery. Home Ed has its drawbacks but I'm 100% sure it's saved her from the same mental damage you and I both suffered from school.

I was very studious and academic but had major behavioural issues at infants, junior school, and to a much lesser extent, the first couple of years of secondary, then had what I guess you might call a mental breakdown at 15, tho in retrospect you could see it as the first signs of my bipolar disorder.

My junior school wasn't quite sure what to do with a tiny, speccy little girl who was their highest academic achiever by a fair distance, from a stable, supportive background, but who also had a seemingly inexplicable ability to do certain very easy tasks which was surely down to defiance (it wasn't, I genuinely couldn't), would sometimes refuse to do things the way pupils were expected to do them, was opinionated and fairly… "articulate" about those opinions, and most importantly, regularly got in fairly serious physical fights, right from when first starting at infants.

I was unofficially expelled at 10, for violence, and sent to an academically selective private school, as it was thought a more academically challenging environment would help. Actually, along with getting older, it did help, and by 12 or 13 I didn't cause any real management issues at all, but I think it was less to do with me not being "bored" as had been suggested, and more to do with the stricter environment, focussed more heavily on something I knew how to do i.e. schoolwork.

I did really well academically, such that by 14 or 15 I was putting myself under a lot of pressure to be getting the highest possible marks in everything, all the time. I wasn't sleeping much and got quite stressed and depressed, so I was put on antidepressants, went really quite a lot more nuts on them, started to self-harm, became suicidal, and ended up in an abusive, restraint-happy adolescent psychiatric unit, which left me with some serious mental damage. And which they then kicked me out of after three months, because I was a bad influence

Went back to my local school for the last few months, managed to scrape my 5 A*–Cs while coping using the butane/aerosol habit I'd picked up in hospital (alongside a drastically-escalated level of self-harming — both were rife in the unit, though luckily I didn't pick up heroin like a couple of the other girls), had a brief go at A Levels, ended up in an adult loony bin, dropped out, moved out of home, had another brief go at A Levels, ended up in a loony bin again, dropped out again, then did fuck all for a couple of decades, before signing up for an Access course mid-manic episode, which ended up in me going to university and getting a degree. Now I'm doing fuck all again cause I can't get a job 😅

So yeah education doesn't always go that smoothly for us I guess… 🤣

Oh goodness that's amazing, that you do that for her. Looking back I would have given absolutely anything to be able to do the learning without having to actually go to school, be in the awful environment and deal with all of the people. If there'd been lockdown and online learning for the whole of secondary I'd have been delighted! But to have a lovely parent who is there to teach you as well, what a wonderful thing.

My younger one is starting primary in Sept (deferred her as summer born). Super bright but like you say I know - and have for a long time - that she will find it really, really hard. Last year not a chance in hell (despite the childcare costs crippling me by deferring!!). Even now, it's going to be so exhausting and hard for her. So hard. And the older she gets the harder it will get, socially. Academically she'll be fine, she's already reading and writing, but emotionally, no. It breaks my heart to have to do it to her but as a lone parent there is no choice. 😔

On the plus side this extra year has given me time to get both of their diagnoses done, and now that is the case school are responding finally and putting adjustments in place for her brother, OT and SALT referrals, etc. I know it's meant to be "needs based" but the reality is that the needs were completely ignored until he was diagnosed despite me fighting on his behalf and him being extremely distressed and begging not to go. 😔 And because of diagnosis they will put transitions in place for her now from the start, so I'm giving her the best possible chance I could get. But still worried it will be a complete disaster. 😩😩

Your DD is very lucky to have a mum who recognised her needs and has supported her like this. It is a HUGE undertaking.

@JarByTheDoor your story is absolutely heartbreaking, I'm so so sorry that happened to you. They completely failed you, as they did so many of us but absolutely spectacularly in your case. The damage done can never be undone, it's so so hard to come to terms with even if rationally you attempt to try to understand it within the context of the lack of knowledge at the time (the failure in support in education I mean, NOT the stuff in the so-called hospitals you've described which is horrific abuse). The fact you managed to survive all of that and just kept trying and carrying on, and even got a degree, is really amazing and you should give yourself credit for that and be really proud.

My childhood was complicated by abuse and moving house/ schools repeatedly but out of all of those endless teachers nobody ever helped. And I think it probably took much longer before it because obvious to me that I was autistic as I thought it was just me being messed up by trauma (actually it was a friend of mine who is a mental health nurse who gently suggested to me in my 30s that I might be autistic and then I started reading up on it and thought.... oh, I see 🤣🤣🤣🤣).

So much damage done to women in particular by obvious autism not being recognised. 😔

Irritatingly, when I look back through my psychiatric notes, I can see stuff, all from around when I was about 15, showing where opportunities were missed:

An interview with my parents where they say that when I was little they had been concerned I might be autistic, based on a couple of worrying signs (autism was something my mum had taken a… particular interest in, before having children ), but then I started chatting away easily, so, y'know, all good here

A nurse from the unit writing down a conversation she'd had with me about understanding people's feelings from how they look, where she wondered about Asperger's.

And most annoyingly, a series of correspondence between two psychiatrists, one of whom had met me several times and thought it might be worth having me assessed for Asperger's syndrome, and the other of whom had met me once and dismissed it out of hand, because I was capable of understanding verbal irony so couldn't possibly have it. So that ended there, and I didn't find out about it until years later.

On googling the second psychiatrist, I discovered that around that time, he was writing about how too many young people were being diagnosed with Asperger's these days, and that it was just a fashionable, more palatable diagnostic trend. This is the guy who wrote that I was probably trying to feign psychosis, because rather than looking at him, I looked at the curtain behind him, and when asked why, told him I was looking at the pattern. (Mate, I'm sure if I did actually want to fake madness, I could come up with more interesting phony psychoses than "finding textile patterns more interesting than your face").

Bloody hell!!! That's even worse, that they did know, so it wasn't even a case of ignorance. They saw it plain as day and ignored it because it didn't suit their narrative. God. I don't know how you've come to terms with that and aren't utterly furious. Although obviously that wouldn't help, but just even reading it all I can think is 😡😡😡😡😡😡.

I really don't know what to say. What utter negligence.

That's so odd as well that your mum was interested in Asperger's at that time when so little about it was on anybody's radar outside the psychiatry profession and even then, not much. Has she ever given you an explanation? Or after all of those horrific experiences do you not have contact? She must have known. 😔

Sorry, very intrusive questions!! 🫣 No need to answer of course if you'd rather not!!

@Nepmarthiturn thank you… to be honest, I think almost all of us have been let down by the school system in one way or another — I'm not even sure it's always possible to have school-as-we-know-it that isn't damaging in some way to a large proportion of autistic girls. (And probably a lot of people outside that group, too, I'd guess.)

You're right that it's easier to emotionally deal with what happened knowing that there was no real malice, just a lack of understanding or of a conceptual framework that could be applied. I don't blame my schools, though I hope that a girl like me in a school these days would not be put in a position where she'd react the way I did.

I feel I was far luckier than you in that I had a really stable, secure home life with no abuse (and parents who understood my weirdnesses) — I can't imagine how difficult it must be to try to disentangle autism from early trauma, years after the fact, pretty much by yourself.

@Nepmarthiturn Asperger's wasn't a thing when my mum was taking an interest in autism — this would've been the 70s/early 80s when she was reading about that. It always fascinated her, I suspect because she's autistic herself, though obviously wouldn't have been the same as the autistic people discussed in this types of texts.

I was born a good few years before the first modern Asperger's syndrome paper was written (that was about 1992-ish, I think?), so she was working with a state of knowledge that we'd now think of as quite limited. The things she noticed were things like me as a baby stiffening up when upset and picked up, not being soothed by touch, not seeking comfort from other people (I'm still like that — if I'm upset or hurt, I want to be left alone), probably some other things. But with that 70s/80s type of understanding of autism, once you have a chatty, interactive kid, the concern goes out of your head. After all, I was just like her in many ways, so how could I be autistic

And by the time I was a teen, the psychiatrists never discussed Asperger's with my parents, and since the public image of Asperger's at that point in time (over 20 years ago) was a geeky monotone teenage boy with all the stereotypical trimmings, I don't blame them for not seeing it.

I was angry when I read the notes a few years ago, but there's nothing I can do about it now.

Have only just seen this topic which will I will now read through but I started this one for food rules if anyone has any...https://www.mumsnet.com/talk/_chat/4781606-nd-quirky-food-rules

To come out of that as such a kind, insightful and thoughtful person, particularly going through those experiences in "hospitals" at such a crucial age of development, I just think you are absolutely amazing.

My childhood was a mess. There was no safe haven because home was terrifying and I was bullied at every school I went to, then we'd move again. SS and police knew what was going on but did nothing. It took me many years to realise this wasn't normal, that most people's families weren't like this.

I ended up living alone at 16 in a very scary place when still in year 11. Had no heating, often no food, electric always cutting off. They all just left me to it, there was no support. Social worker laughed when I said I wanted to carry on studying, she told me to go and get pregnant then I'd be given a house.  Like a traumatised 16 year old would have made a great parent. Genius plan! 🙄😡 Somehow managed to come out of this with good academic results and eventually a degree and professional qualification but had a complete mental health breakdown. It is all very hard to untangle even now, but finally decades later I'm having trauma therapy and addressing all the stuff I buried to try to survive. I've had no contact with my mother for many, many years which helps. I understand she and her abusive husband are now divorced and after calling me a liar she now admits the truth and is now apparently full of remorse  but it's far too late for that. They systematically dismantled me as a person in every way. It took a long time to understand that my grief was not for wanting her in my life, but for the mother I never had. Still now I feel deep pangs of jealousy over the relationships other people have with their mothers.

Having children really brought it home to me. I mean by then I'd realised that most people love their children, that most people aren't violent and deliberately cruel, but when I had my own children and felt the enormous protective instinct and unconditional love for them it made my own childhood even more incomprehensible to me. How vulnerable they are and how I'd do anything, anything to protect them. Seeing how similar my daughter is to me in particular makes me think of the little girl I was who never knew what it felt like for anybody to show any love for you, I feel so sad for her. It became inescapable in the end that I can't bury it anymore and have to do the trauma therapy but I won't lie, it's horrible. 🤣 It's so emotionally draining. But it does work, slowly, to be able to process it and it not be "ever present". I just really do not want to pass it on in any way or affect the way I parent my own children, when they are naturally anxious already and need a stable, supportive parent.

I wish life could be just a little bit simpler for all of us.

After all, I was just like her in many ways, so how could I be autistic.

Haha! This is what my family say about me and my children. They think how we are is completely normal. Have even had conversations where I've described specific behaviours from the children that led to their referrals and family members would say "but I was just like that as a child". Well, yes....

I was angry when I read the notes a few years ago, but there's nothing I can do about it now.

I can imagine. It is amazing you've managed to let go of that anger though, really. It's not an easy thing to do especially after the horrific ordeals you went through. Although you're absolutely right of course, we have to try to focus on the future. But it's amazing you've managed to process it all and get to the point where you can.

To be fair, I still have anger deep down about the adolescent hospital admission… the documentaries that have come out in recent years of mentally ill and autistic children, teens and adults being mistreated in psychiatric hospitals and institutions have had a kind of twin impact on me — horror that it's still going on over two decades later, mingled with secret relief that if I tell people what happened to me now, they might be less likely to flatly disbelieve me or think that I must be distorting the truth, cause they've seen it on the telly. (I suppose they might think I've seen them too and am cribbing from them, but I've only been able to read articles and see clips; I haven't been able to cope with watching it happen to other people.)

So-called professionals can be anything but… I can't believe that social worker said that to you @Nepmarthiturn! I mean, I believe you, it's just that it's jaw-dropping. And at 16, how were you supposed to know just how awful it was, or what you could do about her saying things like that? You had to build from scratch an understanding of healthy, of acceptable, of normal, and even the professionals around you weren't giving you the building bricks you needed to make that happen. But you managed to get qualified, build a stable life for your family… it must've been so difficult.

The autism convo went the other way in my family — initially, when I was waiting for assessment, my dad told me that I was perfect the way I was, there was nothing wrong with me, that kind of thing, but when I was diagnosed, the next time we spoke he'd clearly been reading up, and was using words like "neurotypical". My parents now just go on the assumption that my mum would meet modern ASD criteria if assessed 😅

@TyneTeas that's an interesting idea for a thread! Hope when I wake up there's been some more posts added — I haven't got the mental capacity to write all mine out right now 🤣 Could be a really interesting discussion.