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

It wasn't that we knew and refused to pursue a diagnosis, we just thought he was weird like me (which it turns out he is, but we didn't have the word for it).
I've told him we're here to support him through diagnosis when he's ready, but we just didn't have the spare capacity to spend even more time at doctors and hospitals with him at the time. He has/had an array of other conditions through childhood and we were at various hospitals a lot.
No doctors or teachers mentioned autism to us, probably because, like me, he's bright enough to get the work done and is more likely to shut down than melt down.

Also "reading your book and waiting it out", when he was in meltdown and his behaviour clearly communicating an immense level of distress, may well have appeared to him like indifference from you. That isn't a very empathetic response to somebody crying out for help and support, to ignore them and read a book. Maybe he was older then, and able to self-soothe and you'd discussed this with him and he'd asked you to leave him alone until he had calmed himself, I don't know. But if you mean you ignored him in distressed meltdowns as a small child and ignored him until it stopped then personally I find that really quite shocking and upsetting. Obviously you do have to "wait out" meltdowns sometimes i.e. the child cannot stop it through intervention, but I would still always be present with them, there so they know I care and will comfort them when/ if they are ready and want this. To just leave them to it and ignore them would be dreadful, effectively withdrawing your love from a child's perspective, when they are most in need and totally overwhelmed and feel vulnerable and out of control and most need reassurance. But I'm not sure if that's what you meant, that you did this when he was a child. I hope not. But if you did treat him like that as a little boy who was suffering and struggling to cope so much that he was having protracted meltdowns then I imagine he has an awful lot of hurt and resentment and rejection that he will need to work through somehow.

Okay, but in that case you owe him a big apology for it without caveats. Unfortunately your needs or capacity as a parent don't come above your responsibilities to your child to ensure their basic emotional wellbeing and it must have been obvious (and was from what you've said) that his behaviour was not the norm for his age, therefore it was your responsibility to seek help from doctors and find out what the cause was even if you had no idea at the time what the cause might be. If you'd tried and tried and been unable to get help that would be one thing, but seeing your child in distress and just shrugging and saying "we didn't know what was wrong and didn't have spare capacity to find out" is not ok. You seem to be trying to justify failing him like that rather than accepting responsibility and apologising to him, which is so important.

I wasn't ignoring him (he was 3-5 years old at the peak of that behaviour), but attempts to hug or talk to him just fuelled the rage.
I would speak calmly and remind him I was there waiting until he was ready to calm down, then read with half an eye on him and hug him when he was ready for that.
I know text comes across differently to speech, but I wasn't coldly ignoring him with a book, and he knew he was loved and cared for at all times.

Sorry if my phrasing makes this sound harsh. It is a point of deep hurt for me personally because of how my parents treated me. I know there was so much less knowledge then, but at the same time behaving coldly and effectively punishing him for his distress by ignoring him when he had meltdowns and desperately needed help and comfort, that really upsets me to think about because my parents did similar (and worse) and I think you really musn't make excuses, you must acknowledge the harm that will have caused and apologise. I have parents who never, ever say sorry and always try to justify themselves, seem incapable of self-reflection and remorse so may be projecting a bit. But it seems very cold to treat a child in that way even if you didn't know what was wrong and I would really reflect on it all and how you talk to him about it rather than being defensive if you want to be able to process this together in a healthy way and move forward to a healthy adult relationship with him.

Oh ok, sorry. That sounds very different to what I took from your original comment, I perhaps misinterpreted it and was projecting from my own childhood experience. I apologise.

I think if he's bringing this up with you he clearly has a lot of unresolved and difficult feelings about it and always think being really honest and talking it through, his memories and yours and what happened is so important. I hope you and he can find a good way forward.

The context he brought it up in was that he feels he could have done better academically if he'd had more support at school, our relationship is good.
We still meet up most weeks when his work schedule allows, he's about the age now that we were when we had him, early 20s. We thought we were properly grown up then but no wonder we made rookie mistakes.
It's not that we refused to chase a diagnosis, we were just muddling through most of the time and the autism criteria were much tighter then.
I'm not sure a diagnosis would have actually got him any more support at school, he didn't get much help from his EHCP for deafness and epilepsy.

Thankyou. I'm pretty sure I've had burnout several times over the years but this is the worst. Its nothing like I have ever experienced. Keeping on trying to do all the right things in the right way. Things look more hopeful now than they did a month ago- I hope it doesn't last years!

No, perhaps he wouldn't have got much help at school. There always was and still is basically no provision for academically able, high IQ autistic kids. It may have helped with his self-understanding though, to know why some things are much harder rather than feel like an alien much of the time as many of us did!

The past cannot be changed but processing it together, having a heart to heart, may help you both? With so much more understanding of ND in the last few years (at least on the surface!) it may be hard for him to imagine what it was like then, that autism wasn't on your or teachers' radar at all etc, so may help to explain? It's hard as a young adult to realise how much things can change in 20 years.

My children are still much young and find it astonishing that there used to be 4 TV channels, that mobile phones weren't commonplace until my late teens, that there was no video calling. When we drove past an old phone box repurposed into a book exchange I had to explain what a phone box was for. 🤣 Things have changed so much, it may be difficult for him to understand that it wasn't a choice you made not to get him diagnosed but rather that you had no idea about it at the time, and that even if you had tried to probably the school wouldn't have helped him anyway.

I guess at the age he is, he is trying to get to grips with who he is as a new adult so it's a natural time to look back and try to understand your childhood (and yourself) and ask questions.

Has he looked at right to choose options, if he now wants a diagnosis? That may help him to access it more quickly.

Thankyou. I'm pretty sure I've had burnout several times over the years but this is the worst. Its nothing like I have ever experienced. Keeping on trying to do all the right things in the right way. Things look more hopeful now than they did a month ago- I hope it doesn't last years!

If you're doing all the right things as it sounds, and giving yourself space, then hopefully not!

It's absolutely horrible and so little understanding of it still, from many. I am in a dreadful state with it and can't see any way of improving things. 😣 Really great that you are seeing more hope already; so much easier to cope if at least things are heading in the right direction!

One of the many things my adult children can't understand is old money.

I mean, I don't blame them.

To think that what they regard as a tiny sum of money, 5p, used to be called a shilling isn't the problem.

It's trying to understand that our shilling was comprised of 12 pennies, and that pennies themselves could be made up of 4 farthings.......

So the humble 5p used to be divisible by 48.

Well, until 1961, when the farthing was demonetised.

I'm currently on the Right to Choose pathway, partly because of the DCs scoring highly on the AQ50 and getting me to fill one in too. It was DD that started the topic off as her DP is studying Mental Health Nursing.
When he's ready to pursue it I will help him with the forms, right now he's learning to drive and that's taking most of his bandwidth.
I get the "feeling like an alien", had that my whole life. I see things differently to most, but (as is often the case) it's my normal.
I feel so guilty that I didn't know there was even a word for being like we are, and am really hoping that as a family we can eventually get all our diagnoses together and start to find better ways to frame our experiences.

Inflation (and compounding in terms of debt and saving) should be a fundamental part of maths at school that is hammered home!

I started reorganising my (total state) of a study and found the original document advertising my house for sale when it was new, in 1953. In today's terms without accounting for inflation that would be not far off the average salary after tax for one month!

However, scaling it up for general inflation from 1953 to when I bought the house a few years ago, the "real terms" figure paid in 1953 was 1/12 of the price I had to pay to buy it. Ouch. I imagine how we could live if my mortgage was 1/12 of what it is.

But yes, without understanding inflation, comparing money over time would make no sense at all (aside from the change to decimal currency!).

Hello @Starfish89 Welcome to the thread. It was very brave of you to post here, well done. The first steps are always the hardest. It sounds like you have had some difficulties to deal with in your time. Even if you don't score highly n the tests, you obviously have something going on that makes you feel wistful, at the very least. At some point in your life, it might be worth trying to identify what has been happening so that you can start being kinder to yourself like @Nepmarthiturn wrote about.

@InMySpareTime I'm so sorry if I made you feel more guilty. I think I had a visceral reaction to what you said and misinterpreted it because of my own experiences as a child. I'm sorry. It sounds like you are a very caring person and mother and doing all you can to support him and make things manageable for him to cope with. I do think the diagnoses can really help with the reframing of things. It may help you a lot as well as him. I am so aware of my own failings as a parent and hope my children will forgive me. Nobody is perfect, we can only try as hard as we can to get things right and then fix them as much as we can when they were not.

Re - inflation.

My parents' house in north London, which had five bedrooms and three reception rooms, and in a sought-after borough, cost them £750 in 1949.

They were still paying off the mortgage until 1972.

Ha!

I've just had a brainwave.

I'm going to take over one of the drawers under the wardrobe, where DH keeps some of his trousers and jumpers.

I can easily squash all of his stuff into another of his drawers.

He's got far too many tops anyway

So all my jumpers can easily be accommodated.

I am such a Bad Wife.

So interesting. Per the Bank of England calculator £750 in 1949 is the equivalent in real terms of £22,271 today. If only one could buy a house for such money let alone a 5 bedroom house in London! A fantasy!

It would be fascinating for you to look it up on Zoopla and find its current value.

Sounds like an excellent plan to me!

But then I am not prepared to share space in my home with anyone but my children ever again so perhaps slightly biased. 🤣

Maybe leave one layer of his jumpers on the top of each drawer and see how long it takes him to notice the takeover

🤣 Love it!

Thank you so much for your lovely kind message @Staticgirl

Wistful is a very good way to describe how I feel. A kind of longing and sadness that I am not somebody else, even if it wouldn't suit me at all.

I think I should probably explore what makes me feel like this. It's that constant sense of feeling somehow not good enough or 'different' which really weighs heavily on me.

Thank you again. Your words were very kind.

It's 1.6 million today.

Unbelievable.

www.theguardian.com/commentisfree/2024/oct/14/autistic-children-culture-wars-kemi-badenoch

What an appalling human being this woman is. I have had the unfortunate.... pleasure (?) of meeting her in a work context and she is just as horrific in person.

It's unbelievable that we have politicians issuing pamphlets full of unbelievably ignorant hate speech and misinformation - medically, factually inaccurate - and demonising autistic children; some of the very most vulnerable members of our society whom all should be protecting and are being hugely disadvantaged and let down by inadequate systems that she and for which she and her ilk were responsible. The woman has no shame.

How exactly is one meant to take "personal responsibility" for a neurological condition present since birth? Especially as, say, a 5 year old child. What exactly does she expect them to do? Perform brain surgery on themselves to change their brain to one she finds acceptable?

To think she was Minister for Women and Equalities. Orwellian in the extreme, especially given that last week she was attacking maternity pay for being "too generous" and telling people to "take personal responsibility" for that as well... all women who want children apparently should just marry an investment banker and sponge of him during maternity leave like she did and become his financial dependent for several years afterwards rather than bother to go back to work. Apparently that qualifies as "personal responsibility".

Sorry for the rant but this was just too much for me this morning, having had to deal with autistic children very distressed about going into an inappropriate school environment. I guess they should just be more "resilient", or something. I hate that word: it is always used by people who think that others should accept them being discriminated against and bullied and just shut up about it.

It's 1.6 million today.

Unbelievable.

Wow. So 72 times the price in real-terms (inflation adjusted). Far worse than my 12 times the price calculation for my house!

I just looked at my childhood home in London (not even central). £2.5m. My parents could live there on one salary in the '80s. It really demonstrates why the standard of living is so much lower these days with a comparable job (or even a better one) than one's parents had. And that's before you even start thinking about lower tax rates, MIRAS (!), final salary pensions, no childcare bills, much earlier retirement ages etc.