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Autistic Women Assemble! #2

982 replies

Nepmarthiturn · 06/08/2023 11:18

Helloooo lovely people, a new thread for a us to continue to chat and connect with other autistic women (small talk and word mincing not required). 😊

As before, anybody newly stumbling upon this is very welcome to join us (even if still awaiting diagnosis). But we'd be grateful if others could leave us alone please, like the NT man we encountered in thread #1. 🤣

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Nepmarthiturn · 27/12/2023 15:16

It is very difficult isn't it when needs clash! My son is very different to me and my daughter is ridiculously similar in terms of how their autism presents and both are challenging for me to parent in different ways (it doesn't always make it easier that she is so similar to me, as sometimes our similarities can exacerbate each other!).

One thing I realised recently from the excellent book by Philippa Perry - The book you wish you parents had read and your children will be glad you did - (which isn't about neurodiversity but was still so relevant for me and I would think for most people) is that a lot of my reactions to my children are driven by my own childhood trauma (largely in my case from undiagnosed autism/ ADHD but also abusive parents who would have been abusive to me if NT as well, but the effect was magnified by my conditions). When my children behave in certain ways it triggers my feelings from my own childhood and I am often reacting to that rather than to what they are doing. So for example I am trying to show love and understanding but their meltdowns trigger the memories for me of being that age and the way my parents reacted to that and punished me, told me they wished I was never born, shut me in my room alone, excluded me from holidays/ Christmases etc because I was "bad"). And that makes it so much harder to cope with the sensory overload of my own children having meltdowns and needing my support that I am simultaneously suddenly reliving the trauma of what happened to me when I was their age and had similar meltodowns and didn't receive any love or care or understanding. It seems so obvious but I'd not realised this previously. I highly recommend that book. I am having trauma therapy now but I so wish I'd known my diagnoses and been able to access therapy before having children as my biggest fear is passing on the trauma accidentally through my reactions, although obviously I am NOTHING like my parents. But that still may not be enough to be doing things "right". But they will at least always know I'm on their side, I will be in their corner and fight for them and home is a safe place no matter what is going on elsewhere.

I remember how horrific is was being bullied at school and at home and there being no refuge, no respite, nowhere safe, nowhere I felt accepted or loved. The saddest part is that I thought that was normal, that I was simply unloveable hence everyone hating me. I think I am still living with the consequences of growing up in constant fight or flight mode, those constant elevated stress levels for years on end. It permanently changed my brain development as a child, I think. I look at my children and I know I was so much like them at their age, especially DD, and I hope so much I can watch her flourish in a way I couldn't.

Having children is hard and relentless, even without sensory issues etc to deal with. Having said all of that, despite how we can all become overwhelmed I hope that our little trio has one thing which is that everyone knows they are loved and secure and understood. I think I might actually have found it harder to parent an NT child in many ways. Now they are older I enjoy their company far more than that of anybody else! We just all need downtime on our own as well and I'm really impressed that they're recognising that and respecting each other's boundaries already at only 5 and 6. We don't get this from extended family who are adults, or my employer or their school so they are way ahead of most NT adults in terms of tolerance and empathy and understanding the needs of people different to you.

Sorry for the brain dump! With this time at home to relax and do as we please with no external demands I'd been musing a lot on these things over the last week and realised how much happier we all are when we are in our own environment without the hell of work and school. If only there were more times like this where we could hibernate together and shut the world out!

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RainbowZebraWarrior · 27/12/2023 15:16

That should be crisp packet, not chip packet

Nepmarthiturn · 27/12/2023 15:33

The most overwhelming part of parenting for me was definitely when they were babies. The constant demands, touched out, no peace ever because you can't even say "I need 10 mins on my own". And their competing needs and feeling like I was failing both because how do you give a toddler their dinner/ bath/ bedtime story while comforting a crying baby? It's definitely easier now in terms of physical demands and sensory overload but worse in terms of worry. I guess when they were babies I knew I could protect them from everything but increasingly I can't fix things for them. I can't stop kids being mean or school being overwhelming, just try to give them the tools to cope.

And this will only get worse I know. I am terrified of when they are teenagers and needing to watch them make mistakes and not intervene, to give them freedom knowing they are vulnerable. And can imagine the fun of dealing with teenage hormones and me in menopause!! 😬

Those of you with older children: when did you tell them about autism, that they are autistic and what that means? The reason I was determined to get them diagnosed as young as possible when their autism became obvious was that I know the damage it does to feel like an alien, feel like everyone else manages fine so why can't you cope? I didn't want their self-esteem trashed by that. But I haven't yet said to them "you are autistic", only had general conversations about how everyone is good at different things and finds other things harder and that's ok. We all have stuff we need more help with. Done a lot of work around emotional regulation, identifying feelings, how we can manage those feelings and find individual ways to help us feeling better if we are sad or angry before we get totally overwhelmed. Told them I struggle with a lot of these things, too, so it's ok that they do! But I haven't explained the underlying reason/ diagnosis. They already feel different to other kids, so I am not sure if at this stage telling them about autism specifically would make things worse or better or if they're too young still to really "get it"?

My son did hear something about autism in a story on his Yoto player and our nanny said "do you know that mummy is autistic?" and he was quite interested in that. And we've read books about people with different needs/ disabilities. Just not sure exactly how and when to progress from there to explaining their diagnoses to them. I have asked the SENCO and social workers but they are all hopeless for any useful advice so would be very interested to hear how others have handled this, if their children were too young to understand their diagnoses when they were first given them.

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Nepmarthiturn · 27/12/2023 15:33

RainbowZebraWarrior · 27/12/2023 15:16

That should be crisp packet, not chip packet

I thought you'd been watching too many American films! 😁

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toffee1000 · 27/12/2023 15:35

I did have a more limited diet as a child. My absolute favourite food was pasta -with “red sauce” (tomato), “green sauce” (pesto) and sometimes both. Pasta still is a favourite but I like lots of other things too now. I used to not like chicken or ham or other things like that, but now I do.

I don’t have children but, if I do, I can also imagine it’d be difficult for me to parent an NT child. If they turn out to be neurodiverse then hopefully I can give them good support. My parents have always been supportive/understanding of me which is a plus.

Nepmarthiturn · 27/12/2023 15:41

I love food! I think eating lots of different things from a young age helped. Things like mussels: if you first showed them to me now no way would I touch them, but as a child I gave it a go and loved them. Have tried to do the same with my kids and they eat some surprising stuff like mussels, deep fried baby octopuses when we were in Spain, all sorts. I always tell them you can't taste with your eyes so try things, then if you don't like them that's fine.

I have a couple of issues. I hate eggs. The smell and texture cooked in any way I just can't stand. Fine if hidden as one ingredient in a cake but on its own, just no. Can't stand the texture of kidney beans. And have a phobia of mould so would never touch blue cheese etc. Or raw meat like carpaccio, of offal (again the smell makes me feel sick, and the texture). But most food I love. I think taste is magnified so food is amazing! But that has downsides, like my DS can't cope with anything spicy, which for him includes not just chilli but even pepper! He can't handle it even as a small amount of seasoning in a dish and can pick it up because he tastes it so clearly. He also doesn't like his foods mixed up.

Clothes wise my issue is mainly scratchy fabrics. As long as materials are soft/ fluffy I am happy. Love colour though! My daughter is crazy about colours and matches all of her clothes together herself into some very creative outfits. She treats it a bit like an art project I think. Total magpie as well so anything sparkly is a win. Always after my jewellery. And perfume! She once had a meltdown in duty free because I refused to buy her a £200 bottle of perfume. 🤣 Going to bankrupt me when older, that one.

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toffee1000 · 27/12/2023 15:57

I don’t like tight clothing, but it’s easily avoided. It’s worse on the top half for me, I can tell almost immediately if a t short is too small for me. It’s not so bad with my legs, although I don’t like those really tight athletics leggings a lot of women wear for working out. I wear comfortable tracksuit bottoms/pyjama bottoms a lot but that’s more to do with having eczema that’s primarily on my thighs than anything else.

Nepmarthiturn · 27/12/2023 16:02

@DarkWingDuck how are you doing today? I hope your DH is still in charge of DS and you are managing to rest.

@toffee1000 there's definitely a thing about tastes changing isn't there. I think being prepared to retry stuff now and again is worth it, otherwise we end up missing out on stuff we might actually like!

@RainbowZebraWarrior I totally get what you mean that other autistic people can become too much as well. I think for me it's mainly that any social contact (except with my children!) needs to be in small doses. A few hours with anybody, no matter how nice, is enough and then I need a break. It took me so long to realise this!! I have a fantastic group of autistic women and we have meetups every now and again, maybe 3 or 4 a year, with different people attending each time. I have learned a lot from them and there is so much support which can mean a lot from people who actually get it because they live it, even though we have very different lives. A lot like this thread! But no way would most of us want to spend more than a few hours together. It's also good because we all understand that plans are loose and some people will always drop out at the last minute and that is totally fine and there's no pressure at all. If only all social things could be like that!

@Psychoticbreak that morning routine sounds really good! It's so nice to hear you sounding like you're in such a better place than you were a couple of weeks ago. 

@IHateTuesday are you ok? I don't know what happened yesterday but we're all here if you want to vent/ talk.

@positivedoesit that sounds so positive like your usename! Well done for making Christmas work for you better this year and the plan to go further next year sounds brilliant! I think one day if my kids reach a stage that they won't be home for Christmas one year I will go off somewhere hot, lie on a beach and swim in the sea. I love Christmas but couldn't bear doing it without them here, just me in the house. I was once somewhere hot at Christmas many years ago before ex-H/ kids and spent Boxing Day eating fresh crab on a beach and sunbathing and it was absolutely brilliant! Couldn't get my head around Christmas lights on palm trees, though. 🤣

@TheShellBeach I really need to read that Odd girl out book!

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Nepmarthiturn · 27/12/2023 16:07

@toffee1000 this may be "teaching you to suck eggs" in which case tell me to shut up! But my son had terrible eczema when a toddler to the point of bleeding wounds on his face and hands. Following the advice of the GP (who was the practice's dermatology expert!) and it got worse and worse. I then found an amazing dermatologist who had trained as that because she'd suffered it herself terribly as a child and her advice was almost the opposite of the GP. I followed it and it cleared up in weeks. He still gets dry hands/ face in exposed areas in winter but nothing like it since. I wrote a list of her advice in my phone which I've shared with a few friends over the years and has worked for them/ their kids also. So just wanted to say I'm happy to share that with you, too, if it might be helpful but obviously you may well have seen dermatologists yourself and know far more about it than me and have tried it all already in which case ignore me!

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toffee1000 · 27/12/2023 19:08

I think the eczema is aggravated by me wearing jeans (doesn’t matter what style). It mainly affects my thighs (where the fabric is most close-fitting) and in the past I’ve had a little stripe across the bottom of my back where the waistband would be. Advice would be welcome, thank you! It’s worth a try anyway. That’s annoying about the GP’s advice not working, although what works for some doesn’t work for everyone. At least you found a solution that works for your son.

Nepmarthiturn · 27/12/2023 19:16

Her advice was:

• Bathe/ shower at least an hour before bed. A warm bath/ shower triggers the body’s cooling mechanism but it takes an hour or so to work and it’s better for the skin if you let this cooling happen before going to sleep.
• Bathe every day. Atopic eczema is caused by a gene variant which prevents the skin from forming an effective barrier against toxins. It is the same gene that causes hayfever and some types of asthma. Bathing washes some of the toxins away so is beneficial. It is not bathing that dries out the skin but how you dry the skin afterwards.
• Use Aveeno baby body and hair wash in the bath/ shower (or something similarly gentle). During flare ups oat baths or Aveeno sachets are good.
• Do not completely dry the skin after the bath/ shower. Pat off excess moisture but leave the skin slightly damp. Then use epaderm ointment to seal in the moisture remaining on the skin (always ointment, not cream). Apply epaderm liberally in one downwards motion because rubbing it in circular motions or upwards can block pores. Then wrap immediately in a towelling robe or fluffy dressing gown for an hour before dressing in PJs for bed.
• During bad flare ups clinifast garments can be used instead of a robe and worn under PJs. These reduce itching and prevent scratching.
• Fight it with fire. Do not shy away from using steroids. Continue using them until the eczema is completely gone and do not stop them suddenly, instead phase them out gradually. Always use ointment versions of steroids rather than creams as the skin absorbs them more effectively.
• Type of washing powder makes no difference to irritation provided that the washing is being rinsed thoroughly. If it causes a problem it is usually because the washing machine isn’t rinsing the washing thoroughly, not because of the washing powder. Avoid fabric softener as this is not washed out of the fabric. Always wash new clothes before they are worn because they are often treated with chemicals before shipping. After swimming shower and moisturise immediately.
• Also the main causes of flare ups are winter weather and stress. In winter it’s worth applying epaderm ointment to exposed areas of skin before going outside.

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Nepmarthiturn · 27/12/2023 19:17

I can imagine that certain fabrics rubbing on it would aggravate it! How horrible. Maybe the clinifast garments or similar under clothes might help with that?

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Nepmarthiturn · 27/12/2023 19:20

She was one of 6 children. The only one with eczema but all others had either hayfever or asthma or a combination and then when the genetic link was proved it was a lightbulb moment, she said. Same with me and my siblings, we all have at least one of these conditions, so clearly I passed this gene onto DS. 😩 There is another kind of eczema not caused by genetic predisposition but this is by far the most common, apparently.

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Nuly · 27/12/2023 20:27

Psychoticbreak · 27/12/2023 08:07

Anyway my morning routine here has kicked off, every day I get up and take my tablets (not yet for diagnosis im currently on sertraline for anxiety) with water because i love water and always have a bottle with me (sorry environment!), then i go downstairs and make my first of two coffees, has to be two every morning and while the kettle is on I have a ginger shot or a green juice or whatever is there to hand as it possibly is all in my mind but I feel like I am being good to my body, then upstairs with the laptop and my coffee, check my work emails etc then i go to mumsnet and read any threads i contribute to, I then go to the active page and I right click and open in a new window any other threads I might find appealing, back down for my second coffee and then I go throuogh each thread and THEN into the shower. I like this routine. It means I get done anything I feel I need to get done before I start my proper working day.

I found reading your morning routine wonderfully calming, thank you 😀

Nepmarthiturn · 27/12/2023 20:30

Aaaaaaand again. 🙄🙄🙄🙄🙄

Another Christmas ruined by adult child http://www.mumsnet.com/Talk/amiibeingunreasonable/4971305-another-christmas-ruined-by-adult-child

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Nuly · 27/12/2023 20:37

Hello, I'm sorry I jumped in without so much as in introduction. I'm 55, awaiting diagnosis for ADHD and Autism. I have 3 boys, 2 diagnosed with ADHD and Autism and the youngest (15) awaiting assessment for ADHD - mild.
I work in information/cyber security with a whole heap of other neurodiverse individuals. I previously worked as a software engineer (before having children) but the toxic workforce broke me.

I'm so happy to have found my tribe at work and now here!

TheShellBeach · 27/12/2023 20:43

Nepmarthiturn · 27/12/2023 20:30

Aaaaaaand again. 🙄🙄🙄🙄🙄

Another Christmas ruined by adult child http://www.mumsnet.com/Talk/amiibeingunreasonable/4971305-another-christmas-ruined-by-adult-child

I guessed that would be about autism and didn't look deliberately. I've had it up to here with these threads.

Hmm
TheShellBeach · 27/12/2023 20:44

Hello @Nuly and welcome!

toffee1000 · 27/12/2023 20:47

Thanks for the skin advice @Nepmarthiturn ! I’m not going to read the latest nasty thread as it’ll just be depressing. Christmas is always a bad time on Mumsnt with people moaning about their presents and shitty in-laws, I’m not surprised the number of nasty threads about neurodiverse individuals has increased.

Nepmarthiturn · 27/12/2023 20:55

You're very welcome @toffee1000 . Like you said different things work for different people but I hope some of that helps you! It really helped my DS.

Yes, prob a good idea not to read it. It's one of the worst I've seen. 😔 I've reported it.

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Nepmarthiturn · 27/12/2023 20:56

Hi @Nuly ! 😊 You're very welcome here with us.

It must be great to work with a bunch of people on a similar wavelength.

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Nepmarthiturn · 27/12/2023 20:58

And hats off to you for managing three kids and those different diagnoses and without even knowing your own until referring recently to get it. What a feat!

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Psychoticbreak · 27/12/2023 22:29

@Nuly Welcome!! And yes my morning routine once it goes well I usually am much more productive but I feel the need to do these things before anything else. I am actually in the office tomorrow so I set the alarm 40 mins earlier than when working from home so I can do it. Keeps me grounded so to speak.

TheShellBeach · 27/12/2023 22:49

I have six things on my morning routine list (which is in my head) and can do nothing else till I've done the six things.

Psychoticbreak · 28/12/2023 20:31

Has anyone ever tried the infinity adhd digital diary thing? Keeps coming up on my fb feed.

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