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Neurodiverse Mumsnetters

Use this forum to discuss neurodiverse parenting.

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

313 replies

Galvantula · 17/04/2020 23:15

Hope it's ok to start one without Polter Blush

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. Smile

OP posts:
BlackeyedSusan · 04/08/2020 09:15

And worried it is not autism, though I do have a different diagnosis which explains some things.

Lightyearspast · 04/08/2020 13:13

Mij congrats (if that's the right word?) on the diagnosis. Had you been waiting long to be assessed? I know what you mean re worrying about all the things that might explain why you feel so useless. I hope it will make your life easier.

Clutterista · 04/08/2020 18:49

Nearly 2yrs wait for assessment. Bit of an anticlimax tbh. And yeah why not congratulations, it's a landmark of sorts so might as well look at it positively. Grin

BlueCookieMonster · 08/08/2020 12:25

If it helps anyone, I contacted Sara Heath through Autonomy in Shropshire who does a non ‘medical prediagnostic interview.’ She tells you if you meet the criteria for an official diagnosis. It’s cheaper than a lot of other services out there, so if you don’t need an official diagnosis or want some peace before an official NHS one. It’s reasonable, and helpful.

SilverOnToast · 14/08/2020 06:38

Hi everyone! I’m also new. Diagnosed 2 years ago with ADHD, but always wondered about getting evaluated for autism. DD has ASD. I’ve always felt like I’m performing my role in life. No long term or close friends, but just being whoever others need me to be and leaving quick before they figure out I’m faking it.

I have spent a huge chunk of my life being someone for short bursts, working short term jobs, and then moving elsewhere when I can’t maintain the mask anymore. This has left a string of random chaos in my wake. I thought that this was because I was impulsive (I am prone to hypomania but not depression) but my therapist thinks that this perpetual solo travel might have been a desire for control and solitude instead. Now that I’m on medication for the ADHD it’s like I can see aspects of my life more clearly, and that my inattentiveness is just one small piece of the puzzle. I think everything has come to a head now, as I’ve realised that since I’m married with a small child and have certain responsibilities, disappearing into the ether regularly on a whim is not really the done thing.

Lockdown has been a huge relief, as I find interacting with others through a screen for work far easier, and it’s like all the social pressure is off.

nevernobody · 15/08/2020 16:24

Hi Silver. This sounds familiar. I'm awaiting ASD assessment, have sometimes wondered if I have ADHD, not sure. That's interesting about the ADHD meds giving you more clarity to understand other aspects of yourself.

I have a dh & teenage kids, but I am a serial quitter of jobs, friendships, educational courses, social activities. I keep people at arm's length and then I run away when they get too close because it's just too stressful and difficult to keep the mask on and get close to people. I am a pretty awful parent and partner I've come to realise. I'm not easy to live with and can't cope with other people for long stretches. I am hoping that one way a diagnosis might help is to enable me to explain to other people that I have to be like this and am not just being unfriendly/antisocial/weird/thoughtless.

I've also found lockdown quite a relief. I already wfh mostly, but it massively reduced my stress not having visitors here or having to go to any social things.

SilverOnToast · 16/08/2020 06:57

Hi never! Yes, I think having clarity and explanation to help other people understand why we are the way we are can definitely be a positive part of diagnosis. I do appear aloof and unfriendly too I think, unless I'm consciously following the rules and masking. I did think that this was inattentive, but I think it's just that social stuff is do much of an effort. And, yes, what you said about being a serial quitter really resonates too.

Parenting can be hard! I do think I'm a pretty useless partner most of the time, mainly because I tend to let my control issues pile up without saying anything and then have huge meltdowns. I do think that age has helped with identifying triggers for this though. And having a kid with ASD has helped me see parts of myself that I'd hidden. I don't want her to feel that she needs to camouflage who she is either, if that makes sense?

EveryPlanetHasAYorkshire · 09/09/2020 23:10

What happened to Polter? Is she still around? I miss her.

spiderbride · 23/09/2020 11:13

Hi all. New to Mumsnet, new to this thread. Early thirties, female, no kids, yes cats. Nice to meet you all Smile

I am currently in the process of ASD diagnosis; the assessing psychiatrist says it's very likely I'll be diagnosed (although given COVID I don't know when the next step will be). I had loads of mental health problems when I was younger as a result of having the absolute fuck bullied out of me (poor social skills... go fig Grin).

I'm starting to feel angry that I wasn't diagnosed earlier. When I was stimming or had tics as a kid my mum's reaction was to get annoyed with me and tell me to stop, rather than take me to a doctor. Ditto for the severe disorganisation despite getting near straight As at school, the weird habits, the occasional meltdowns, the obsessive interests... I could go on. But then again, autism in girls wasn't as well recognised. I don't blame my mum; I'm just angry.

Bullying derailed my life. I'm still dealing with the physical and psychological consequences. It hurts that people assumed I was "just weird" rather than look for a reason. I can't imagine thinking that way.

GrammerPedent · 30/09/2020 12:14

I have what I'm pretty sure is undiagnosed ADHD. My lack of focus is destructive and I desperately need to put some measures in place to help me work.

I am self-employed and I would really like to find another self-employed ADHD MNetter who fancies teaming up to be "accountability buddies" and keep each other company during the working day to encourage each other to get through our task list.

I've posted elsewhere on MN but no responses as yet. Does this sound interesting to anyone here?

BlackeyedSusan · 07/10/2020 15:52

permission to reply to previous posters after a short sweary intermission.....

AAAAAAAAAAAAAAAAGggggggggggggggggggghhhhhhhhhhh fucking bloody hell the letter has arrived, the appointemnt is due but by fucking video . which I am having a total utter panic about. fucking video. fucking fucking video.

oh and please ring this number if you need support with additional needs.... what like communication difficulties.... that make ringing up people difficult.

BlackeyedSusan · 07/10/2020 16:06

That's shit spider.

getting on for 20 years older Autism was definitly not recognised if hf, or ingirls.

also bullied...

also severly disorganised.

ps your mum may have had sensory difficulites herself. dd's stimming sends me into sensory meltdown. we have to find quiet ways of stimming or stim in our own spaces.

my dad was autistic as an autistic thing... so lots of routine.

Anon778833 · 28/11/2020 20:22

Has anyone seen the thread about sexless marriages and someone on there basically was saying that autistic people are abusive, cold and have no empathy?

Some of the posts have been removed but I despair that so many people still want to post nonsense about autism.

toffee1000 · 01/12/2020 11:45

Sounds awful SugarbabyMilly. There are so many nasty posters/posts on Mumsnet, it’s just toxic. I’ve not been on AIBU or Chat for months.

Anon778833 · 02/12/2020 12:13

Yes, I think the nastiness level has definitely got pretty bad. I joined MN in 2004 and today it's nothing like what it once was...,I think mumsnet HQ should be doing more to stop casual disability discrimination on here.

What typically happens on these threads (and others) is that if as an autistic person you ask people not to generalise and spread misinformation, you get told that no wonder you don't understand because you're autistic yourself and then they say that you're proving their point that autistic people are horrible. This has happened to me several times in the last few years. I don't think there is any excuse for it at all.

Attention · 04/12/2020 04:27

This reply has been withdrawn

This message has been withdrawn at the poster's request

Sonmi451 · 08/12/2020 19:56

Hello. Hope there are still some people reading this thread.

It has become apparent to me that my brain doesn't work the way other peoples' brains work, but I don't know if I tick enough boxes to be diagnosed as having anything in particular.

Since childhood I have always felt like I'm just not like other people. I'm almost bluffing my way through, fake-it-til-you-make-it style, and when I get to the end of a particularly challenging event, I think "Phew, I think I got away with it."

I can have extreme (to me) social anxiety, sometimes I'm anxious about even interacting with my few very close friends. If I'm in the supermarket and I see someone I know, I'll hang back until they've gone, or I'll go down a different aisle to avoid them.

My sense of direction is non-existent. If I go to the loo in an unfamiliar building, when I come out I can't remember which way I came in. Travelling regular routes near home is usually ok, but I can't visualise the route in advance, nor give directions. I use Google Maps a lot, and don't have the ability to just reverse the directions for a return journey. I honestly feel like there's a part of my brain missing, that most people have, but that I was born without. People think it's really funny when I've been to their house four or five times but still don't know how to get there.

It was when I was casually googling to see why my sense of direction is so shit, that I saw it's often a problem for people with ADHD. So I've been reading about it, but for all the traits where I think "Yes, that's me!" there are lots where I think "No, definitely not." I forget what I was saying mid-sentence, why I was going into a particular room, I can even reach for my phone, and by the time it's in my hand, I've forgotten why I wanted it. I find myself staring into space sometimes. I start tasks and forget them. I make drinks and forget them, so go to warm up my coffee, and then find it in the microwave hours later. Certain noises go through me, eg a baby banging a spoon on a plastic dish. But I'm rarely late, I don't often miss appointments etc, but then I rely heavily on my diary, set a phone reminder for when kids have school swimming lessons, and have the morning routine so ingrained that it generally runs smoothly. The hyperactivity aspect doesn't seem like me either.

I read about Dyspraxia, too. I bang into things all the time, I've constantly got a bruise on my thigh from the corner of the table, and I regularly knock my funny bone on the door handle. I am HOPELESS at any sport involving a ball, can't throw, catch, or kick one unless it's by accident. Yet, I rarely trip, nor do I knock drinks over - but then, I always make sure to put them in a place where they won't got knocked, and drum it into the kids not to leave their drink near their elbow, so maybe I've just developed coping mechanisms?

Sorry, this is getting really long, and I'm just rambling. I've phoned my doctor, and they are going to ring me on Thursday. But if they say no, it doesn't sound like my problems are caused by anything in particular, then what? Does that mean I'm just hopeless and a bit daft? I know I'm not, but I also know that what goes on in my head is not normal.

Sonmi451 · 08/12/2020 20:00

@GrammerPedent and @Attention - I'm also self-employed, alongside working part time as a bookkeeper, so if there's room for another, I'm in.

Doesn't sound typical of someone questioning their own faculties, does it? I just find numbers much easier to deal with than people. They are black and white, correct or not, they don't argue and change their minds, they are not influenced by the weather, or their emotions. I'm organised (mostly) because it makes my life easier, although I think I was more organised when I was working for an employer - now that I'm my boss, I can do what I like, so organisation has lapsed, and I'm paying the price!

Sonmi451 · 10/12/2020 20:47

Update, in case anyone's reading. Doctor was pretty dismissive. She said it's all perfectly normal, lots of people have a poor sense of direction and don't want to go out sometimes.

She basically reduced all my worries and concerns to that. So, hurray, I guess. Hmm

Leafylife · 11/12/2020 19:30

Hmm Sonmi451, that's not good if you feel there's something you want checked out. This is what the NICE guidelines say about ADHD:

"Adults presenting with symptoms of ADHD in primary care or general adult psychiatric services, who do not have a childhood diagnosis of ADHD, should be referred for assessment by a mental health specialist trained in the diagnosis and treatment of ADHD, where there is evidence of typical manifestations of ADHD (hyperactivity/impulsivity and/or inattention) that:

began during childhood and have persisted throughout life

are not explained by other psychiatric diagnoses (although there may be other coexisting psychiatric conditions)

have resulted in or are associated with moderate or severe psychological, social and/or educational or occupational impairment"

So if you meet those conditions, especially if you can give examples of how your symptoms existed in your childhood, then you should be referred for assessment. Maybe print out the NICE guidelines and go back to the GP?

Anon778833 · 12/12/2020 09:47

@Sonmi451

I’m sorry your GP was dismissive. Maybe go to another one? I was very lucky, my GP referred me straight away.

I always felt ‘different’ as well. So does my daughter. Having a diagnosis can really help, no end.

Bagadverts · 12/12/2020 09:52

@spiderbride

Hi all. New to Mumsnet, new to this thread. Early thirties, female, no kids, yes cats. Nice to meet you all Smile

I am currently in the process of ASD diagnosis; the assessing psychiatrist says it's very likely I'll be diagnosed (although given COVID I don't know when the next step will be). I had loads of mental health problems when I was younger as a result of having the absolute fuck bullied out of me (poor social skills... go fig Grin).

I'm starting to feel angry that I wasn't diagnosed earlier. When I was stimming or had tics as a kid my mum's reaction was to get annoyed with me and tell me to stop, rather than take me to a doctor. Ditto for the severe disorganisation despite getting near straight As at school, the weird habits, the occasional meltdowns, the obsessive interests... I could go on. But then again, autism in girls wasn't as well recognised. I don't blame my mum; I'm just angry.

Bullying derailed my life. I'm still dealing with the physical and psychological consequences. It hurts that people assumed I was "just weird" rather than look for a reason. I can't imagine thinking that way.

@spiderbride I also get angry, more with the world though. Also a psychiatrist who failed to diagnose me when as a family we recognised ASD. I’ve definitely been and am affected a lot by ASD.
Sarahandduck18 · 07/01/2021 17:56

Helpful thread. Can’t believe I’ve never come across these before.

Also awaiting diagnosis but my traits are pretty obvious.

I really lack ‘people’ skills eg eye contact, small talk, boundaries, participating in groups etc.

I don’t really know what a dx will do but I feel like I might as well try.

SingToTheSky · 07/01/2021 18:03

Just saw this again... was thinking oh that would be a good thread for me. Noticed the first reply to the OP was, in fact, me. 😳😂 I have namechanged since.

Sarah hi! A diagnosis might validate you and give you a concrete reason for things you’ve struggled with, and if that’s all it does that’s still pretty huge. It made such a difference to me.

Things are tricky ATM - much as the methylphenidate was life changing in terms of focus/impulse control, it also turns out to have massively escalated my anxiety. So I came off them and I need to sort out trying elvanse instead. But I’m feeling so unmotivated, struggling with controlling my eating etc so I’m just a bit of a mess!

BertieBotts · 13/01/2021 15:33

I always lose these threads! Hello, will jump back on :)

I've come off my ADHD meds as I'm pregnant. I don't think I needed to come off them but I just felt weird taking them, and since I'm not working at the moment it seemed pointless.