Neurodiversity support thread for women with suspected, diagnosed or self-diagnosed autism, ADHD and other NDs #19

[Galvantula]

Hope it's ok to start one without Polter

Previous thread: www.mumsnet.com/Talk/mumsnetters_with_sn/2954319-Neurodiversity-support-thread-for-women-with-suspected-diagnosed-or-self-diagnosed-autism-ADHD-and-other-NDs-18

The last one filled up a little while ago, hope everyone is doing ok.

Larklight Thank you. I've spent the last two days thinking and reading. I've often felt ashamed that my character seems to have changed over the years, depending on whom I've been with at the time. As a young child, I saw myself as Darrell from Malory Towers. In my teens I was a tomboy (my best friend was into the army), then a bit of a romantic heroine (thanks to a family friend I admired and who introduced me to D.H. Lawrence's The Rainbow). I suspect I've latched onto people and 'become' what I think is attractive to them.

Now, as I look back over my life, it feels as if even the quirks that are mine might not really be mine but fairly standard autistic behaviours.

And what if I'm now recasting my life and myself in light of this 'epiphany' to fit the descriptors for autism? It's so hard to disentangle everything.

Apologies for the navel gazing!

Hello Toffee100 and Difficultcustomer.

Hey, I’m diagnosed with Aspergers since I was 16 and now I’m 24. But I’ve just asked for a referral to a neurologist for Tourette’s. I’ve had tics since I was 10, so quite a long time. The gp just needs to make sure it’s okay with my psychiatrist (for mental health problems) first, so hopefully he agrees.

@Oddgirlout I’m OK, actually. This lockdown situation is not much different to my normal life, seeing as how in normal times I have no social life to speak of. I’ve been able to continue seeing my counsellor via Zoom, which is helpful.

Interesting post about changing your character, @SignOnTheWindow . I don’t think I’ve really changed my character much. I think I’d be too scared to! Or perhaps it’s just that I can’t/wouldn’t be able to tell what they’re attracted to. Social anxiety means (for me) that I find it incredibly difficult to speak to people. For example, there have been people in the past who I’ve wanted to befriend, but I haven’t even been able to speak to them because my mind just told me “you’re too weird”, “you won’t have anything in common”, “why would they want to be friends with you”, and I ended up not being able to speak to them at all, hardly.

SignOnTheWindow and toffee1000 both of your experiences ring a bell with me. I definitely play different characters, often for long periods of time, just trying to be the person I think people want me to be, to the point that even I am not really sure what I'm really like. But I am also crippled by anxiety about any social situations and find it very hard to form friendships. I don't have any close friends and the people I do think of as friends are all from situations where I've been thrown together with a group and had to get to know them - work, university, etc. I think acting a character and severe social anxiety are 2 sides of the same thing, for me anyway.

Hi, I like to join too if that's ok I've not yet diagnosed but have been on an NHS waiting list for 1.5 years now with no end in sight unfortunately. I think that I might also have inattentive adhd so hopefully will be assessed for that at the same time if possible. I generally lurk rather than post but have decided that 2020 is the year for me to be more courageous and to interact more online and in realife also.

Squeakycheese I hope you don't have to wait too much longer. I'm also trying to interact more, but having spent my life pretending to be 'normal' I find it very hard being open with people. Online seems a good place to start, getting used to being honest with the benefit of anyonymity.

One thing I've found during the lockdown is that my anxiety and stress levels have been much reduced. I think this is directly due to having less contact with other people, but I didn't realise until now just how much that stress was always there. I think I've been masking since my teens, and I can't face going back to the anxiety it causes, so things will have to change for me once life starts to return to normal, starting with contacting my GP as soon as face to face appointments re-start.

Hi Larklight, i've found that my anxiety levels are right down as well at the moment. I've really enjoyed being inside and as I have social anxiety it's been lovely to have a break from being around others for a while. It's also made me aware of how bad masking long term has been for my mental health.

What you wrote about acting a part really resonated with me as I used to do the same when younger. I'm finding it tricker to be a chameleon as I age though, i've not got as much energy now! Good luck with seeing your gp when this is all over, and it's great that your anxiety is better

My anxiety hasn’t changed much. I don’t have much of a social life normally, lockdown life is pretty much my normal life!

hello all.

I'm starting to feel a bit stressed about not knowing when I'll get a psychiatrist appointment through. I've got a work performance chat coming up soon, the first since i had any idea about why i struggle. I feel like I might blurt it all out to my manager.

I'd say I'm managing my (probable) ADHD issues slightly better just through being aware. Like I write every single thing down as I now know I won't remember. Still really hard not to get distracted and sidetracked though.

I just feel so close to getting some help with this!

so close yet so far... It is really hard when you were getting close to getting help... the hope snatched away at the last moment.

First I was told a year waiting list. (dd's was two years) then I heard after several months that waiting lists were about 18 months, then approaching the 18 month mark we go into lock down, so who knows now. So frustrating.

Woo, I got a referral to neurology finally for my tics. Will be a long wait but at least it’s done,

For those who have adhd, How does it present. I often think I have adhd, I fit the symptoms very well but cos I’m autistic I feel like everything is just put down to that instead. I have a long history of being chatty and distracted and not putting in my effort, poor behaviour. But the only thing that makes me doubt it is I always had good marks. Like even though I wasn’t watching the teacher and stuff I still knew exactly what was said half the time, the other half I completely tuned out and had no idea what was going on. Also I concentrate much better when I’m doing something, like if I’m playing a game or doodling I can listen to the teacher better. Half the time I have no idea what people say as something has caught my attention, or I only catch the last bit of what they’ve said because it takes extra time to focus on the person and what they’re saying. It’s difficult trying to differentiate between what is the autism and what could be adhd. Anyone have any thought?

Argh typed a post then DD crashed into me.

TL:DR was that I got good marks in tests but annoyed teachers by being ridiculously slow to complete work and never shutting up talking. Or alternatively "daydreaming" as it was called. I was so distracting/distracted that I occasionally got put outside the class on my own to work .

I've only been referred for assessment so far, but it world explain a lot for me.

I think me and my 2 kids all have ADHD - my son (6) the impulsive type, my daughter (8) the inattentive type and I seem to be the combined type.

Problem is - nobody believes me. Neither of them have any difficulties at school that make the teachers think they need a diagnosis. At parents evenings I get told that they are well-behaved and bright (except he can't sit still and she sometimes misses instructions because of daydreaming but they consider these minor, normal child type things).

I'm very happy that they're doing so well at school. At home things are chaotic, quite a large part of that is down to me, I feel. I can't seem to organise us into a routine, our house is always a tip, they don't listen to me so I often end up losing my rag, I give ultimatums and then forget to see them through.

Luckily we have a close relationship and we're all extremely forgiving. We can be screaming at each other at 10:00 and laughing and cuddling at 10:10. I'd rather be on a more even keel though!

Any tips?

Hi, has anyone on the spectrum ever tried to change their diet? I'm trying to help DH lose a couple of stone but I find it makes me really anxious. I want to change, I could lose some weight too but I just can't seem to change in my head from eating the way I already do. I feel out of sorts and really on a short fuse. I don't suppose anyone can help?

@ChaoticMinds your house sounds like mine. The cuddles are nice, but I hate when I end up shouting. It's usually because I lost track of time and they all got too hungry/tired. 🤦

@oddgirlout I've not changed my diet but I do exercise every day and that has the double benefits of keeping me in shape and keeping my mental health on track too. If I were trying to lose weight I'd do something active and enjoyable rather than force dietary changes. Running, cycling and online workouts are the obvious ones during lockdown.

How easy is it to get a diagnosis?
I've always felt I've known I have attentitive ADHD and probably Aspergers too but I have children and so I'm not sure if I should keep quiet until they grow up as I wouldn't want to have them taken away if I get diagnosed but I've been a SAHM for over 20 years and started to really worry at the prospect of going back to work and how I struggled before and think a diagnosis will help as employers will be more understanding.

@crumpledhorn that sounds so similar to me. I've got four children still at school. I haven't had any difficulty with having the diagnosis and their care. We are in a particularly good situation with a large amount of support, my DH in a good job and are financially secure. I'm also really well educated so I think I present quite well. HOWEVER, I don't think it has to be like that or you are at risk of having your kids removed. Social services don't take kids away from drug addicts, they just don't have the time or resources to investigate non urgent cases. If they're not involved now then I don't think getting a diagnosis will change that. If they are involved now then taking positive steps to understand yourself and seek help might be quite well received - I don't know for sure.
As for how easy, for me it was pretty straightforward. One trip to gp and they sent the referral. I have a history of untreatable mental health difficulties so perhaps I ticked the right boxes. GP first point of call and go with your reasons why written down to help you.
Sorry for the rambling post!

Sorry, just to add a bit more. When I was diagnosed the Dr said I was capable of work, that I needed help finding the right fit. It might be if you get a diagnosis you can start finding that right thing and working towards it. For me it was academics and I'm slowly doing my PhD now. X

Oddgirlout and ChaoticMinds re exercise and diet...

I've had many failed attempts at losing weight, really hard to say how much of that, if any, is ASD related, as it's difficult for everyone. I think some of my food issues didn't help - for me it's mostly about routine, having the same breakfast and lunch every day, etc, so I really don't want to eat special foods or recipes for weight loss. I've lost quite a bit of weight recently just by cutting down on the amount i eat but eating exactly the same foods as normal. I now eat about two thirds of what I used to and I'm quite obsessive about the size of the food portion on the plate & knowing how much space the blob of food needs to take up. Not sure if that's a very healthy attitude mentally, but it has helped me lose weight in a way that seemed to work with ASD.

Regarding exercise, I'm wondering if this is something others find, that I only really exercise if it becomes a special interest. E.g. I get really obsessed with reading books about running and learning the best training methods and looking at my parkrun stats, or I'm drawing diagrams of all the yoga poses and memorising all the English and Sanskrit (?) names. The problem is then I lose interest after a few months and sit on the sofa doing nothing active for ages, which doesn't help with anxiety and depression. I do walk, but even then I'll link it in with a special interest e.g. for a while it was local history and I was going round ticking off different buildings I'd seen in historical photos and taking photos from the same angle of how they look now.

I just don't seem to be able to motivate myself to do exercise long term without that side to it - which is ok as long as it lasts but not healthy when I'm doing nothing. I wish I could make it into part of my daily routine, because I do have some routines I'm very rigid about, but it doesn't seem to work with exercise. Has anyone else found this?

@larklight I'm finding the same as you. DH and I have signed up for a programme and I just don't want to eat the special foods. They are standard enough recipes but they aren't my usual meals. A week in and in really struggling to make myself eat anything which is a 'diet' but not really a sustainable one! I'm quite anxious about it all and finding it hard to know how to manage it. I can't stay borderline over weight for ever, especially with some sort of painful joint condition! I just want my normal food!!
Exercise is fine just so long, just like you, it's all I think about! What to do!
Maybe it's lockdown-itis but I feel rubbish today!

Checking in; had my referral back in for mental
Health services. Had one previously, but have heard nothing! Am going to chase that previous referal and complain.

Hope you find out @BlueCookieMonster.

Nothing here yet. :( I haven't heard anything since I sent back the assessment questionnaires 2 months ago,

There's not been any word at all on when routine psychiatry appointments will start to resume post Covid.