Autistic Women Assemble! #2

[Nepmarthiturn]

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. 🤣

Argh.

ADHD I still hate you.

DS had a GP appointment this morning, to get another Fit Note for the DWP.

I reminded him twice yesterday.

He was still late, though, and could not be seen.

Luckily, the receptionist rebooked the appt. for tomorrow and promised to get the Fit Note backdated.

I will have to phone him and text him in the morning

And this, DWP, is one of the many reasons why he should get ADP.

@TheShellBeach I hope your DS got sorted this morning.

I woke up to a text from DWP saying my PIP review was complete. I've been awarded enhanced rate for both daily living and mobility. I've been fighting this for almost 3 years including going to a tribunal which was a nightmare, despite having overhelming evidence. I've finally succeeded after finding the strength to put in a change in needs 13 weeks ago (was previously only awrded standard daily living). I now have total sense of relief and closure at eventualy being believed.

@RainbowZebraWarrior

I am utterly thrilled about this. Truly delighted for you. I know from personal experience how difficult the whole PIP/ADP thing is.

Well done. You must be feeling so relieved.

And yes, DS got his Fit Note this morning.

Talking of DS, I've diagnosed him with h/EDS now, so he needs to go to the GP and get it confirmed.

I was just asking him idly if his joints were unusual and he hyperflexed one of his fingers. OMG. I was amazed. Then I checked his skin elasticity. Tick.

I also asked him if he often got sprains or strains - not so much now, he said, because he's really careful after many, many injuries.

You'll think I'm stupid, but because I wasn't diagnosed with autism till two years ago, I never joined the EDS dots.

But having read about it on this thread, I thought it was worth investigating.

I think DS1 also ticks the EDS boxes too. I'm going to ring him up and discuss it.

His habit of extreme procrastination leads me to think that he'll never go and get diagnosed, though. He lives in London, where GP appts are like hens' teeth.

One great thing about our little village is that getting a doctor's appointment is really easy and quick so DS2 will get one immediately.

Pleased he got sorted with his fit note, @TheShellBeach

It was due to my EDS diagnosis that I joined the dots with Autism. Last figures showed over 40% of Autistic people are also hypermobile. Of course the criteria changes all the time and often people get a diagnosis of Hypermobile Spectrum Disorder.

It didn't really start affecting me massively till I was in my 40s when I started dislocating - the price paid for joints that have gone out of range too far for too long. DD is going to be more unlucky though and she already has issues, and diagnosed with other Co morbidities. At least she's getting support though. She was 10 when she was diagnosed by Genetics.

We are going to pop out soon as I'm thinking I might have a look in JD Sports for a new pair of supportive trainers. I've not treated myself in years, and now I have the PIP payment on the way, I intend to start looking after myself as I've been far too neglectful of my needs.

Hope everyone else is doing OK.

I don’t have EDS. It’s so interesting how it affects people differently; I’ve seen documentaries about it where people have trouble eating properly so they need feeding tubes and so on. And there are loads of different types, too. It sounds like such a complicated disorder.

Has anyone else got NT kids or is it fully hereditary?

I've just got one DD and she's AuDHD like me.

It's not 100% fully genetic, I don't think. Obviously depends on both parents. There is of course always the possibility of late presentation / diagnosis too. (As in, kids might appear NT but then go on to be diagnosed ND much later in life)

One of my four is NT.

Hey everyone!
Right on cue and just as the Night Watch appears on Friday night..........................

https://www.mumsnet.com/talk/am_i_being_unreasonable/4978482-why-do-people-want-everything-cured-except-autism

I’ve just seen this and am reading it, it’s quite awful and the OP of that thread seems to want to be argumentative

Well done 😀

Thanks @JewelleryCat I still can't believe I've finally been awarded.

I see the 'cure for autism' thread has now been hidden which means a few folk obviously reported it. There was some despicable posts on there (as usual) so I can't imagine it will be reinstated. Even if they removed the offensive posts, it still invites others due to the nature of the title.

There is another thread about ND people being able to recognise other ND people. It was mostly fine, but there was a poster who said she had ADHD but couldn't deal with Autistic people. I really wish people wouldn't post stuff like this as it just pits one disadvantaged (sub) group against another and does nothing for the 'cause' (wether or not it be true, or if the person was even genuine in the first place) I'm all for free speech and the ability to express one's opinion, but sweeping statements and generalisations are never helpful.

I’ve just checked and that ‘cure the autism’ thread has been deleted which is good. Yes I saw that comment from that poster too and got a bit confused. How does that work, not being able to stand autistic people when she has ADHD and her symptoms flare up?

I wonder how that works for me being both adhd and asd.... do i just not like myself? people are weird.

I’ve known for a while now that ADHD is widely seen as the one socially acceptable neurodiversity.

I see parents listing a bunch of autistic traits in their child, saying they either have a diagnosis of ADHD or are awaiting one, and shooting down any suggestion of autism. They don’t want an autistic child.

Same with adults. So much content on social media about “little known ADHD traits” which are actually autistic traits. Again, they don’t want to be told that they might have autism too.

ADHD is portrayed as difficult to live with sometimes but manageable. It’s portrayed as loveable scattiness, silly, irreverent, kind of fun.

No one wants to accept autism, in themselves or in their children, because it’s perceived SO much more negatively: the difficult loner, the socially awkward weirdo, the person that’s hard work and everyone would rather avoid.

I know. I was thinking that. I mean, yeah I really annoy myself sometimes, but bloody hell I try and be kind to myself. I think it comes down to lack of self awareness when people make statements like that. I also think we have enough 'haters' already that I'd never fuel the misunderstanding further by saying as a ND person I hated other elements of the ND community.

Anyway, I hope everyone is OK. We are having a gentle and quiet day here after DD had a sensory meltdown last night. Hoping she feels well enough for a trip to Forbidden Planet that we have booked in for tomorrow. Have ordered a spare pair of ear defenders for her as backup (she only used to wear them occasionally, but it's now becoming obvious she needs them almost all the time)

@Jellycats4life I think you are so right with this. I also think that because ADHD is treatable with drugs, it may be regarded differently for many reasons.

This bit of your post in particular rings true.

"No one wants to accept autism, in themselves or in their children, because it’s perceived SO much more negatively: the difficult loner, the socially awkward weirdo, the person that’s hard work and everyone would rather avoid"

Yes, and now you say that, I think that’s why so many parents refuse to have their children diagnosed when they’re young (and why there are so many threads on MN with parents finally agreeing to have their children assessed as teens, once they’ve hit absolute crisis point - school refusal etc).

You hear:
It won’t change anything
We use certain parenting techniques already
They were getting on OK at primary school so we didn’t see the point
My personal favourite: We felt they didn’t have enough traits to get a diagnosis (that’s because you don’t know enough about autism, sweetheart)

Me again... sorry. I've been musing on this for a while. A diagnosis of Autism (or undiagnosed traits) is often used against us. I think I'm right in saying that we've possibly all had experience in that. It's probably another reason so many put off accessing assessment. In the case of parents, this often presents as them not wanting their child to be treated differently or have a 'label'

Herein lies the biggest hurdle we face. The stigma of having Autusm is becoming worse in many ways as more people are diagnosed. We see and hear it all the time. The folk who say it's handed out like sweeties etc. We really can't win.

I don't tell many people in real life about my diagnosis because I know some will (wrongly) judge and make assumptions. When I did my recent change in needs PIP claim, I didn't want to send my 20 page report as it's just so personal and I didn't want DWP picking it apart. I just screenshotted my diagnosis from my medical records. Luckily, I haven't been questioned further this time (although i wnet into detail about exactly how it affects me, the same as I did three years ago pre diagnosis). 'Luckily' I also have other conditions which have contributed to me receiving the award.

There is still so much judgement and misinformation about Autism. The fact that this means we ourselves can often feel levels of shame / embarrassment / negativity can further impact our difficulties in the Neurotypical world we live in.

Sorry again, I'm in a rambly and introspective mood today. Possibly processing the PIP award which I expected to be gleeful about, but also (like diagnosis) can invoke a period of reflection and acceptance.

I agree that ADHD is seen as a more desirable neurodiversity, for many reasons, but when I see how DS2 fails to cope in so many ways, it's the ADHD which causes most of the problems for which he can receive points on the PIP/ADP form.

Not remembering things. Not remembering to eat, wash, change clothes, take meds - the list is endless. Not being able to find things, ever. Hyperfocusing on video games to the exclusion of almost everything else.

Forgetting things. Always forgetting things! Nearly chopping his hands off when he tries to cook. Wandering off and forgetting the cooker is on and the dinner is burning.

ADHD is terribly disabling. And when you add the awful challenges the autism also brings to the table it's no wonder DS2 has never had a job.

And it's no wonder we are all entitled to PIP. But I'm always reading threads on here where posters claim that so-called "high functioning" autism is a lesser disability.

I agree that ADHD is terribly disabling. My DD has a diagnosis of autism but I have always suspected ADHD too. I’ve just always had an excuse not to pursue it.

Now I can see her relentless dopamine seeking impacts her life in such an extreme way. She’s spent the entire Christmas holidays horizontal, wrecking her brain with YouTube and YouTube shorts. When she’s not attached to a screen she’s bored, sullen, whingey and understimulated. She has never in her entire life been able to entertain herself with anything other than a screen. She’s 12.

And yet at school, where phones aren’t allowed, she’s high achieving, engaged and generally does amazingly.

The NHS diagnosed her autism but I think we might have to go private for ADHD. Although that’s a minefield, I know.