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!!

Hi Nep!
We've stayed in the general area before, yes.
I just fell in love with the house so I booked it.

It looks amazing!! When do you go?

In a month.

Let's hope this fantastic weather holds up then for a wonderful summer! There are so few places that have an untouched landscape like this as far as you can see, what a great place to go to escape.

@Nepmarthiturn my DC are 7 and 12. DC1 has ASD and ADHD diagnosis and attends special ed/out of school care. They're definitely much easier atm than they were even 3 years ago. Meds for ADHD have been a live saver and we have 1 weekend a month respite for the last 2 years which has been a godsend. Have been some red flags raised at school for DC2 so observations/support starting and it's been recommended that I look for a sensory integration therapist. A lot of these struggles are very similar to mine which makes me quite emotional.

It is a lovely age but the demands of the kids, work, and life in general have really battered me down the last few years. We've dealt with bereavement, burnout, depression the last few years. I finished postgraduate part-time study last year which was amazing but has left me brunt out. Covid lockdowns and border closures left me absolutely broken since we couldn't see any of my family (I'm not in the UK) and we're still recovering from it all.

I am really impressed with the system here though. DC1 has had specialist out of school care and special ed since they were 5, a yearlong one-to-one course on ADHD to help him understand himself and develop coping strategies, as well as support for us as parents. Waiting lists are long but nowhere near as long as in the UK (I was referred in February and should be seen in September).

It's taken me a long time to realise I might be autistic. I minimised a lot of my struggles and put them down to anxiety, and we suspect my DH is autistic so figured DC inherited from him (already diagnosed on his side of family).

Thanks for setting up this thread. It's nice to have somewhere to share with people who are experiencing the world in a similar way - I've spent a lot of my adult life wondering how on earth other people cope.

Does anyone on the thread take medication for ADHD?

I'd love to hear experiences of this.

Me. I don't really think of myself as having ADHD — the traits that I used to obtain the ADHD diagnosis were all noted within my earlier ASD assessment, and accounted for within the ASD framework, so the ADHD diagnosis feels unnecessary to me (in my case, and within my own understanding of myself — I'm not making any judgement on anyone else's situation). I only went to get an ADHD diagnosis so I could get the stimulant drugs. I take Elvanse 50mg or a double dose if I've pulled an all-nighter. It helps me wake up in the morning, and makes it slightly easier for me to convince myself to actually begin tasks, and sometimes complete them too.

Thank you, @JarByTheDoor that's helpful.

Right! DH and I have done the Saturday housework and I feel free!
We just need to hang the curtains again. They came back from the dry cleaners yesterday and the cats slept on the package they were in overnight.

@PatienceOfEngels that does sound like a lot of stuff to deal with the last few years. It must have been horrible being separated from the rest of your family. My two are only 4 and 6 still. Also lovely ages but it is very demanding especially when I'm unwell.

The school system where you are sounds amazing! Here every single bit of support has to be fought for, which is really unhelpful when as a parent you are already burned out.

I know what you mean about being emotional about having passed on the autism. I feel the same. There is guilt that now their lives will be harder. But I hope far different to mine as they have got their diagnoses so young and I'll make sure they are properly supported instead of growing up very confused and blaming themselves for things they struggle with. And also without the autism they wouldn't be "them" in many ways, so it isn't all bad. Just hope the world is a bit kinder to them than it was to me I guess.

I do. Same one as Jar. I do find it helps with me focusing and getting things done.

Sorry for not coming back to the thread, I can't cope with this heat, it makes me so ill! I might have to give in this year and get an air con unit, every year I'm like no it's too expensive and the hot weather is only for a couple of weeks, it's not even July and it was 30 degrees today.

Probably doesn't help that I've been helping DH put his new shed together and that we've had to take bits apart and re-do them because he doesn't read the instructions and just wings it (even more annoying after I point out what the instructions say). I may have lost my temper with him when he decided to just grab some longer screws rather than make sure the roof was slotted in properly(plastic shed). In the end I figured screw it, not my shed, not my stuff going in it so he can do what he likes and when it falls apart next time it's really windy I'll just agree with him when he blames the shoddy materials.

I'm also finding working in a team hard, I had the choice of doing something alone or in a team and I figured a team was a challenge for me...understatement! I am not a natural team leader but I'm being forced into that role because nobody else is doing anything or communicating properly so I'm trying to coax everybody in the team to do stuff and give their views/opinions, it's exhausting, that saying about getting blood from a stone is how I feel, I might just ask if I can switch and go solo if it carries on like this.

I just feel like a massive grumpy cow, it's the heat, it makes everything harder/seem worse.

@TheShellBeach I take 60mg Elvanse and, in some ways, it has been life changing. My brain is quieter and it stops me from seeking dopamine in damaging ways, e.g. impulsive spending or binge eating. I have lost 4 stone as I no longer want the constant hit of fat and sugar I've craved my entire life.

It does help me focus but I'm afraid I don't always get to choose what I focus on. I could have a huge work deadline looming but my medicated brain decides it's time to hyperfixate on stripping all the old gloss paint off the skirting boards 😬

I had also seen some talk online about ADHD medication bringing ASD traits to the foreground and that has definitely happened with me. It's like, now that the frenzy of ADHD-related chatter and activity has been subdued, I'm much more outwardly autistic and way less tolerant of discomfort.

I live in a constant paradox because I spend all winter utterly miserable about the constant darkness and I will the time away until the clocks change again, but I HATE the heat of summer. I get about two months a year where I can enjoy the lighter nights before it's sweatier than satan's jockstrap.

I have Ehlers-Danlos and POTS (both of which make it difficult to regulate body temperature), so the slightest exertion means sweat is running down my face. Add in the hypersensitivity and sensory issues from autism and I'm a red, sweaty, itchy, angry mess all summer. I can't breathe, I can't sleep. Hayfever is trying to kill me.

Last week I left the house at 7:30am and physically sighed with relief because it was the perfect temperature for me. Got in the car and the thermometer told me it was 10 degrees C 😂

This completely resonates with me. My focus is much better but I find it difficult to transition between activities so I can get "stuck" on something and it is a nightmare if I have a long list of small tasks to work through. It has improved my ability to stay focused on one task, but not stopped my procrastination about starting things. And I still struggle a lot to make myself do things I'm not interested in.

I have found that it has made me a lot more blunt and assertive because my mind is clearer, which I think is a good thing but my others may disagree! 😆

Mm. I've been seen standing at the sink wiping one bowl for several minutes. Or focusing so intently on getting the surface of the spreadable butter clean, even and smooth that I completely forget that I was making myself a sandwich and just continue to work on making the butter perfect. And it dramatically increased my ability to focus on correcting imperfection when it comes to my hair, too, resulting in an irresistible relapse of my trichotillomania. So yeah… I don't get to choose what it makes me focus on, either.

I believe that I need medication to stop myself from binge eating.

This is the problem! I think it can exacerbate some of the obsessiveness of the autism. So while I am less impulsive, and more focused, I am finding it SO hard to work, because work doesn't interest me. 🫣 Before I could make myself do it but be distracted a lot, now I love the hyperfocus but really need a life where I can focus on stuff I actually like. 😆 I have just placed a huge order for bulbs to plant in the autumn from Farmer Gracy, and I should be unpacking the dishwasher and folding washing, changing bedsheets. The ADHD meds seem to be exacerbating my "special interest" tendencies, although the mental peace from washing machine brain is welcome. It would all be fine if I could retire now and just do gardening and music and cooking. But sadly bank balance does not agree. 🤦🏻‍♀️

It's so difficult isn't it, what is the balance? Seems whatever I do it will always be a struggle to make myself do the mundane boringness of life admin and housework because my brain is just fighting me on it, seems to get worse the longer it goes on actually, because I just think "why am I doing this AGAIN?". Same clearing up and boring tasks every day and basically I just don't want to. 😆 I mean not that most people do, but how many times can you sweep the floor and empty the bin and make packed lunches before your brain has a stroke in self-defence at the tedium of it all?

IMO drugs tend to enhance or attenuate something that's already there. If your tendencies are fundamentally unfitted to the demands of modern life, tweaking aspects up or down with chemicals can only do so much. I suspect I may be fundamentally unfitted to basic existence.

It definitely does help to stop compulsive behaviour IME. I am less impulsive now. More considered and clear in my head. But as Jars expressed the idea of being more focused can backfire if you focus on the wrong thing and I haven't got the knack of directing the focus to what I want to/ should. Would be very interested if anybody else has managed that and how.

Interestingly the information leaflets on the medication said it should be provided alongside talking therapies to help with management of the condition. I asked my Trust about that, they said they don't provide it. 😒 So maybe that is the missing piece of the puzzle, counselling to learn the techniques and practice them in your individual circumstances (there's only so much you can learn from info online, I think individual, tailored support is needed hence that recommendation in the medication leaflets). Negligence really. My Trust are awful and haven't even bothered to adhere to the prescribing guidelines or treatment plan agreed. Maybe like with depression, the meds are meant to go alongside actual support and on their own are only addressing half the problem? Idk. But if you think it may help you it's worth a go @TheShellBeach. I mean, I'm still taking it so I guess things must be better than beforehand, but it doesn't fix everything. Well not for me, anyway. And has actually made some things worse. Gah!

This is such a more succinct way to put my ramble. 🤣🤣🤣 You are very good at expressing things concisely.

I just googled trichotillomania after reading that and I do this. 😔 I didn't know it had a name. I used to do it as a child as a stress reaction I think and have recently started it again, I wonder if connected to the ADHD meds based on what you said as I only started them a few months ago? My hairdresser has told me off and trying so hard not to do it. 😩😩

So maybe then it doesn't stop compulsive behaviour for me, actually maybe that has increased but the impulsive behaviour is less frequent now?

I find it all very confusing.

Team work sucks. 😆😆 Actually don't mind it too much, if roles are clearly allocated and people are just allowed to get on with their role. But this insistence on endless "collaboration" i.e. wasting half the day chatting about any "updates" people have drives me insane. If there's something specific to discuss/ clarify surely people can call/ email each other as it arises? Far less to update people on because so much time is being wasted having arbitrary "catch ups". 😒😒😒

Managing people I hated. For exactly the reasons you've said. Even with lots of support and coaching and flexibility in schedules some people do not deliver or provide terrible quality work from sheer laziness and you're then left to basically clear up the mess for them so you can deliver high quality work on time that doesn't make you look bad. I remember being up at 3am rewriting stuff from supposed graduates from top universities who could not write in sentences. Never again, I refuse to take any role now which has direct reports, so understand your pain!! Reading that gave me flashbacks. 😆😆

I hope it gets easier. Also sorry the summer weather is horrid for you. I'm the opposite and have been miserable with it being constantly rainy and grey this year and then even when it looked nice outside and there was some sunlight it being freezing and windy. It gave me the rage that we had to wait until June for some warm, sunny, still days. 🤭 Is it any better if you are just relaxing in the shade rather than building a shed?

Yes, I think body-focussed repetitive behaviour disorders/BFRBs may be more common in people with ASD and ADHD than anyone realises, maybe because most people either don't think to mention it to their doctors or are afraid or ashamed to, or it gets subsumed into either self-injurious behaviour, stereotypy, self-stimulatory behaviour, self-harm, or one of the other words used for things we do.

I think you're right to distinguish between compulsive and impulsive behaviour, when it comes to the effect of stimulants. ISTR that, supposedly, increasing circulating dopamine is meant to reduce ADHD impulsivity, but there's no reason I can see that it should help with compulsive behaviour, and every reason to think stimulants which increase motivation and goal-directed behaviour might make it worse.

I've pulled hair since I was a preteen, initially just eyebrows and only when stressed, but evolving over time, as well as nailbiting, skin-picking of various kinds, and so on. The moment my TTM started targeting my head hair a few years ago, I did habit reversal therapy (a specialist therapy for BFRBs) with a psychologist who works with a lot of people with ASD, because head hair was my red line for "this has gone too far". It worked really well, but the moment I started amphetamines, the head-hair pulling compulsion slammed back into my life, ten times stronger than before. It's gradually got less extreme as I've got used to the drug, but it's still there.

Team work does indeed suck. Even worse, team-building exercises. Fuck that for a game of soldiers.

trichotillomania - do eyelashes count? I used to pull out my eyelashes - till I was quite old. I found it very soothing. I didn't remove them all, just all the loose ones. As a child and early teen I would twirl my hair constantly. Don't know how or why I stopped - too busy, maybe.