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

Hi all - I think I posted previously on one of the original threads, but I've name changed and drifted on and off them since then. DD2 is diagnosed Au-ADHD (inattentive kind), DD1 is waiting for ADHD and Autism assessments and I'm diagnosed Autistic (after seeing so much of myself in the kiddos). I work in an incredibly supportive team as a SALT and I'm in the incredibly lucky position that I can use my ASD as a strength in terms of picking up on triggers and logical leaps that often NT colleagues haven't seen.

Taken me till 40+, one failed career and a total retrain to get there though!

Hi @TorturedParentsDepartment !

Glad you came back. Your story gives me some hope as I am drowning at the moment and don't feel like my current life is sustainable.

So great to hear that there are some autistic SALTs. My children have seen brilliant SALTs privately but the NHS service here is appalling: they are illegally rationing services claiming their remit is only for non-verbal/ barely-verbal children who cannot form sentences when the ICB have commissioned them to provide all SALT services therefore any autistic children who can speak are left with no provision whatsoever. It's good to hear that this appalling and unethical behaviour isn't the same everywhere!

@Nepmarthiturn

I've quoted one of your posts in the 'conversation' but my observation is based on all of your posts in this 'conversation ...................

You sound a wonderful parent. A beautifully kind, understanding, caring and empathetic mother, in the face of your own struggles, and your qualities as a parent stand out to me.

I wish I had a mother like you.

Thank you @Clarice99 , what an incredibly kind thing to say. That has made me feel quite tearful because this year has been so very difficult, trying to fight all of the authorities for help for them both and watching them crumble, daughter off school for months, and trying to continue being positive for them and manage my own exhaustion (and hold down my job as well with barely any sleep!). I have felt so bad about getting irritable with them at times because I was beyond exhausted but am doing my absolute best for them, which I suppose is all any of us can do. I just wish they didn't have to go through all of this to have their basic legal rights to education met, their mental health damaged in the process while the battle goes on.

I worry so much about parenting because my parents were terrible so I have no good model of what good parenting looks like to follow. I guess I often think "what would my parent have done?" and do the opposite, which seems so far to be a fairly good guide so far. 🫢😆 I have been feeling quite hopeless about it all so your comment means a lot.

The part of lone parenting I find hardest isn't the "doing everything" in terms of caring and earning (although that's not easy, of course) but having to make all the decisions alone and having nobody to point out your blinds spots or what you might be getting wrong, it's all on you if you make the wrong decisions. I am sure there is a lot I get wrong because we all make mistakes but we do have a home full of love and I hope they will forgive me for my mistakes when they are older and reflect back on their childhood and point out to me where I went wrong.

@Nepmarthiturn what you're going through sounds incredibly difficult and in addition to your own struggles, and navigating your health issues, it's a hideous 'double whammy'. But, you're a shining example of a parent who strives to meet the needs of her children, against significant barriers, and not having a template to work towards having had shit parenting yourself.

I had awful parents, they were very abusive and neglectful, and consequently, I chose not to have children. I honestly don't know how you cope. I read your posts in awe of you and your unwavering devotion to your children and I often think you deserve a medal!!

Your children will know that you have their back, and the safety and security that brings to them is priceless ❤

😭🥹 Thank you. What you've said has given me a much needed boost today.

Heh - shit experience with NHS paediatric services is actually why I retrained! DD2 was just bounced away with no support and hardly any intelligible speech - and I went down so many rabbit holes trying to work out how to help her that I got the bug and ended up career changing! Then went no where near paediatrics in the end after all that!

Isn't it awful that there are so few services for our children.

It makes me so angry that their needs are not met.

Hi everyone. Signing in if that's OK. Nearing middle age, diagnosed with ADHD and autism a few months ago (like @SwordToFlamethrower). Privately but still took bloody ages.

I have to say, it's been harder post-diagnosis than I expected. I guess partly because I have started on ADHD medication and am still trying to get the dose right, so that's taking up a lot of headspace but also:

• I am trying to be more myself or tune in to what I feel/want/need, but it feels very difficult at times, and I sometimes resent having to "parent" myself and figure out if I'm hot, cold hungry, bored, overwhelmed etc. I hate having to treat myself like this, but feel like I need to. Previously my message to myself would have been "shut up and get on with it" (not great either!) so it's quite hard going.
• Being more honest about what I need (especially space/quiet) is making it apparent how hard it is to get those things with a young family and a partner who doesn't always get it, despite saying he does. I wish I'd been diagnosed pre-kids and perhaps chosen a different path, though I expect having said kids is what pushed me to my limit and therefore to diagnosis.
• I worry that the ADHD side being medicated is going to bring the autism side out more (apparently a thing).
• I am self-employed, so any reasonable adjustments etc are down to me. Which is lovely, but also means there's no framework at all, and that's overwhelming.
• Huge anger and not being able to just do x or y. There are lots of things I am good at, but other basic things that I battle with.
• I don't show / feel anxiety, but take it out on myself or shut down afterwards.
• Not wanting to use my ND as an excuse, so constantly second guessing myself as to whether a particular thing is a legitimate issue for me.
• Constantly wondering if my eldest child (7) is autistic. School have said it's best to wait and see at the moment because some of the things I've identified as being a concern may just be her age, but I'm desperate not to miss something if she needs support as my own teenage years were hell on a stick.

I wondered if anyone could relate to any of that, and whether you had particular coping strategies or adaptations that you found useful in the early days/generally. I just can't see what would help at the moment, and there is no post-diagnosis support here (happy to pay for coaching etc if actually useful, just don't know where to look), and trying to find strategies that suit both NDs isn't easy.

Yet another goady autism thread in AIBU called “A diagnosis one”

I was just coming to this thread to link that.

Best avoided, goady bollocks.

https://www.mumsnet.com/talk/am_i_being_unreasonable/5196623-a-diagnosis-one

I need advice.
I go to an afternoon tea club every week.
Essentially it's just a bunch of us meeting up to drink tea, eat cakes, chat and do a couple of quizzes.
I've been going for seven years now.

For the last three weeks, one of the men has unilaterally decided to put music on, via his phone, and it plays in the background.
It's driving me mad. It's low level, intrusive sound, and I can't bear it.

He's been asked to turn it off, but he just turns it down, so there's this constant, awful noise in the background, and even though it's quiet it's still driving me mad.

If he does it next week I'm just going to walk out and never go back.

(For reference, the group is for retired people)

Do you have loop earplugs or flares? https://www.loopearplugs.com
https://www.flareaudio.com

I’ve never tried loop so I don’t know how well they work but I do have flares and for me, they work at calming the background noise down while still having the foreground noise so you can hear that clearly.

If there is an organiser of this group, maybe they could make it a no phone hour or two. I’m sure this man can cope without music for that long and the rest of the group would be much happier. The afternoon club sounds great though apart from this man with his music!

@TheShellBeach - is this an organised group or 'ad hoc'? If organised, it's not unreasonable for the organiser to ask tell him to turn the music off for the duration of the event. The organiser doesn't have to point out who it's affecting, just that his music is adversely affecting someone (it's probably affecting others too because unwanted background music/noise is really bloody irritating).

It's a shame if you have to leave as you must enjoy it having been involved for seven years.

Some people have zero awareness 😡

It is an organised group with a leader. I'm going to take her to one side and explain.
I nearly walked out in tears last week.

Definitely do TheShellBeach. I would feel exactly the same as you.
It is very sad that you could potentially lose an activity you've loved and participated in for a long time, that shouldn't happen.

The man should wear earphones. He has no business forcing his annoying music onto everyone else - the fact that he's playing it in the first place is very rude. I think it's the best thing to discuss it with the leader and make it clear how upset you are about the whole business. They need to sort it out.

Sigh.

https://www.mumsnet.com/talk/am_i_being_unreasonable/5197438-to-worry-about-the-future-a-lot-because-of-all-the-kids-with-sen-diagnoses?utm_campaign=thread&utm_medium=share

Ooh, that one's been deleted.

MNHQ are improving.

Hurrah. The improvement is long overdue.

No.

You don't get driven out of a group you've been part of for 7 years by a man being a selfish prick.

He's already been asked to stop but continued anyway, that says everything people need to know about him.

Definitely tell the group organiser how important that is and that it has reached the extent that you are feeling you might have to leave the group. I know any kind of conflict is horrible so it's easier to run away but please don't lose this because of this selfish person, who may well not stay long term like you anyway, and if they had any other intention of doing so would have a little more consideration for existing members of the group and be wanting to befriend them not alienate them.

As for the endless ant-autism threads, echo the sigh.

The fact we're grateful that Mumsnet occasionally deleted the most appalling ones now just shows how low the bar is IMO. What is still left to stand? It's so depressing, and I know many of us are exhausted by/ have given up entirely on even answering these bigoted and ignorant "opinions" about our disabilities which would be deleted immediately if our protected characteristic happened to being black or from a particular religion or this was directed at gay people yet somehow disability discrimination is fine and we should all be grateful if they crack down on the most obvious cases that they're scared will result in legal cases if they don't, yet let the horrific long-standing factually wrong threads stigmatising autistic people and claiming all of their relationship problems are down to autism when their partners largely aren't even diagnosed with autism anyway, are left to stand. Mumsnet is a million miles from complying with the basic requirements of the Equality Act let alone actually being on the side of anyone with a disability and we see year on year the hatred growing unchecked. I find it very upsetting despite our small have here.

*Haven

And probably lots of other typos, so tired. But generally intelligible still at least, I hope.

Disappointed to see the Guardians reporting on this. It’s irresponsible to add in ‘that he has since being diagnosed as autistic’, which people may read as this being a reason for his behaviour. Perhaps whoever wrote this should do some research and think about the stereotype they have (perhaps unwittingly) reinforced.

https://www.theguardian.com/uk-news/2024/nov/01/boy-given-life-sentence-over-school-hammer-attack-named-as-thomas-wei-huang

https://www.psychologytoday.com/us/blog/abcs-child-psychiatry/201705/the-link-between-autism-and-violence-isn-t-autism