Neurodiversity support thread for women with suspected, diagnosed or self-diagnosed autism, ADHD and other NDs #18

[PolterThreadStarter]

As usual, latest support thread.

Welcome

Cyb have you seen OH at all at work? That was my first port of call and my employers did offer to fund private assessment (I declined as I wanted to choose my own psych). It may also give you some evidence to help support a request to your GP.

Hello beardy

Also, there is guidance you can both refer to in the NICE guidelines for adult diagnosis and there is specific guidance for GPS now (it's quite new).

GPs

Hi all, just checking in.
We had family of my Mum's partner visiting. (Mum lives in France and her partner is French. DH and I speak German and English and a smatter of basic French)
Mum and partner are definitely ND. ERGO, his family is fairly ND. Their 8 yr old son looks to me like he could very well be autistic.

The parents seem somewhat unaware that he is not a normal 8 year old. Though he does go to a SALT and some other kind of therapy. He was impossible for us to understand and his social level was on a par with our kids but of course he is much bigger.

Anyway, we ended up babysitting the three kids except that we could not communicate with one and they were all like excitable toddlers. He was the worst. Jumping on all the furniture and running around the pool in the garden where ours know they are not allowed. Urgh.

It was hard!

Sorry. Will catch up with everything else later. Just needed to vent!

Apparently ADHD and autism recognition/belief that they exist is in France is low.

France is really problematic for any ND stuff and is still pretty much stuck at the Bettelheim theory of autism stage (i.e. refrigerator mother and psychoanalysis).

And I don't mean to insult the boy or his behaviour at all - the parents were a bit useless. Although the Mum seemed nice (if a little bit off in her own world) dad was totally detached and didn't really get involved at all, except to drink with FIL (mum's partner). It was just very frustrating and very draining.

FIL also has no knowledge of kids and I appreciate ours are full on and can be hard work. This boy was just.... not an 8 year old IYSWIM. Just. Urgh.

Cyb, this is exactly how I am feeling, crushed. And I begin to doubt myself. Maybe im not ASD. But how can it explain away all the other traits? I stim (mostly at home granted) fgs. But it would seem that none of this count for anything because I can communicate fairly efficiently. And I dont think I can try and get a third opinion. And I cant share it with anyone in rl as I think id just get eyerolled. Other than dp, he thinks im asd anyway!

I know what you mean MrsN. They just see him as 'him but sometimes that means needs aren't met. Sounds like the Dad is pretty aloof.

Beardy just because no-one will refer you doesn't mean you're not ND (double negative). My GP agreed to refer me with the words ^Well I don't think you have Autism but if you really want me to, I'll refer you'. I wish I'd seen her face when the diagnosis was confirmed!

Thanks for ideas re diagnosis and handling GPs Polter, I will look into that.

Beardy, I hang on to the fact that I'm very confident about my self-diagnosis. The fact that we both have neurodiverse DCs speaks volumes, I think. When I look at my family of origin I can see that there are clearly family members in at least two generations who went undiagnosed too. But the horror stories do make me think I must find the money for a private diagnosis ideally, so I can hand pick who to see based on their reputation for understanding ASD in adults and women. I don't there's much debate that the reactions you've had so far have been idiotic and I hope it helps to hear other people say so.

Hi! just dropping by so I don't lose you all.
I've technically only done a 2 day week in work but I'm exhausted. The kids have been awful. The worst ones are there full time and don't leave for summer holidays. Luckily they will be moving up to preschool soon and we will get the fresh batch down from the 18month-2 and a half room. Which has my key children.
They're all awesome.
One I'm convinced has autism. But I like her. And she likes me but won't go to the other staff in my room. So that should be fun.

My Rubbish Day by Cyb0rg

So I was feeling quite good about myself this morning, having got through an evening with my PILs yesterday. Always a challenge as they're very PA and it takes me a while to realise how rude they're being to me, and then when I realise, I wonder why DH hasn’t been setting them straight. He’s a bit of a mummy’s boy tbh, though improving. Anyway, I did OK.

This morning, I was going to pick up a prescription and wanted to check I had enough money in my bank account. I read somewhere that only 10% of people pay the prescription charge and always wonder why I’m one of them, given that we don’t have two pennies to rub together. Anyway, I went to check internet banking and found that stupid, hateful Windows 10 had got one of its stupid, hateful automatic upgrades going on, and when it finally finished it had deleted all my games. I have lots of old-fashioned solitaire card games on my computer. I use them when I’m stressed. On a stressy day I might play for an hour or two, which makes me feel like a timewasting loser but keeps me calm. You can’t get these games anymore, DH downloaded a patch from a forum years ago. They are all gone. He says he’ll try and sort it out when he gets home from work but I don’t know if he’ll manage to, and even if he does all my statistics will be gone.

Anyway, I went to collect my prescription from the surgery. But it wasn’t there. They’ve sent it electronically to the pharmacy. I never signed up for that. I like to get it from the surgery and check it, and then take it to the pharmacy I’m nearest to (not always the same one). This is the second time a pharmacy I’ve been to has signed me up for automatic electronic repeats without my permission. I guess they get a payment per person. They must have to forge your signature. It makes me so angry. It happened to my sister too, so I guess it must be a ‘thing’. The surgery said they'd cancel the electronic thingy, but I had to go to the next town to get the drugs this time. So I drove there and spent £8.60 of my last nearly-a-tenner to get my drugs and drove home again. I didn’t talk to them about the electronic thing because I couldn’t face the aggravation, and I knew it had been cancelled anyway.

A little while ago, I opened up the pharmacy bag and found that the drugs are all in blister packs instead of the bottles they normally come in, so I’m going to have to push them all out of the blister packs and into my old bottles, which is bad enough (hurts my hands) but THEN I looked closer and found only my 100mg are there and all my 200mg are missing. I rang the pharmacy (big deal for me, I hate the phone) and they say the request only had the 100mg on it. So the surgery only passed on half my request to the pharmacy and now I’ve spent my last tenner getting only half my drugs. This is exactly why I don’t get my drugs done electronically. Because the surgery ALWAYS make a mistake and it’s better if I can spot it before I even leave the premises.

So now I have to go back to the surgery on Monday, explain all of this, wait three days and pay another £8.60. I'm just dreading it. They never listen in the surgery. They're so impatient and I’m really worried I may just lose it and start shouting or crying. I feel like, why do these things always happen to me? My week is already so busy. And I'm really, really broke. DH will get some money in on Monday, so I can do it, but that money was already spent three times over.

Now someone nearby has started to play really loud music, with lots of drunken singing along going on.

How is everyone else’s day? Better, I hope.

Ugh that sucks Cyb0rg. How irritating about your drugs!
I haven't had too bad a day. I'm 22 and a recent uni graduate so still living with my parents whilst I look for jobs. Am trying to get diagnosis done so I can tell employers and they can hopefully put stuff in place, reasonable adjustments etc.

That's a point actually - I know getting a dx can take ages, so what should I tell employers in the meantime? I had a ed psych report for uni that allowed me extra time due to learning difficulties (mainly slow processing speed/slow handwriting etc). Having read a lot on aspergers/ASD it seems a spiky learning profile like mine can fit (i.e. issues with executive function) so if I did get a dx it would link everything together - not just the learning difficulties but the social ones too.

Cyb

toff would your learning difficulties come under the dyslexia banner? I'm just asking as it's something employers will have heard of and be familiar with, and will get you a referral to occupational health/possibly access to work where you can discuss all your needs. I had adjustments at work before my dx via an OH assessment.

No they don't. I never had any issue with reading or spelling (was v good at spelling actually). I know there are other issues but they're the main ones, and I was fine with both.

Hi, hope you don't mind me joining in! Just wondering if anyone here claims PIP due to their ASD? I'm already on DLA but thinking about switching over soon.

Thanks guys, I feel cheerier now. DH is home and I'm cooking, which is a great stressbuster for me.

toffee, can you get some kind of interim 'to whom it may concern' letter from your GP? Like, 'Toffee has been my patient for x years, during which time we have discussed her issues with xxx and yyy. She is currently awaiting formal assessment by zzzz, but in the meantime, it may be beneficial for her to have a, b and c available to her, so that she can focus optimally during working hours.'

Hello Toby.

Yeah sounds like a good idea Cyb0rg. I could see if I can get in touch with the learning support people at my uni and ask for advice. I wonder if my old ed psych report would count for anything, it was done in Sep 2013 when I was 18.

I think I might be autistic or somewhere on the spectrum. My anxiety is currently ruining my life and after some talks with mum (and remembering past I appeared to have buried!) I show a lot of signs of a low level of it? I've always been very socially inept, I made inappropriate jokes that offended people (mildly, mostly people assuming i was calling them fat when that wasn't intended) and I tend to infodump and get really, REALLY into my few interests. I also get really distressed when things don't go my way or I'm forced to make a minor decision (like: do you want to go to the store tonight? and it's a spiralling mess of 'My dad taking me to the store will take time out of his night and he doesn't want to go but I really need x,y and z or I won't have food for tomorrow because my diet is so restricted and I'm so scared I'm going to get ill tonight blah blah blah) and I sit panicking for hours about going to the god damn store

I have many, MANY embarrassing moments from school and I was targeted a lot by bullies. I used to have frequent tantrums in primary to the point where teachers had to physically drag me from classes and from under desks where I would hide.

But then I can be completely 'normal' most of the time and I don't really know what to think :( I also don't know if I want the stigma of a diagnosis, but if I go for one at uni and get it I'll be able to access so much help and Ill have an explanation for my sometimes manipulative behaviours where I get really upset when people don't want to include me in things?

Sorry, I just threw this in here. I doubt anybody has the energy to unpack that.

Being able to act normal is something Aspies can do very well. After all, we've been watching and imitating people for years!
I've also wondered about the "stigma" of a diagnosis. I've also wondered what would happen if I didn't get a dx, because I feel I am definitely different to NT people but if I didn't get a dx people wouldn't know, especially because I can act fairly normal.

Yeah, I definitely imitate people on how to act in a lot of circumstances. Mostly I learned to hide any interest I had though because they were always deemed weird. In fairness, they are pretty weird interests.

I guess the biggest reason I'm questioning is I'm pretty empathetic and I do have an imagination, I can really immerse myself in other universes and create entire extended universes/worldbuild. Character design is much harder though!

Plenty of autistic people have empathy and imagination. It's a complete myth that they don't. When i was a child, I didn't just have an imaginary friend, I had a whole imaginary universe that I played in for years and years!

To the complete bafflement of my teachers, who just saw me walking around the playground on my own...

Tobythecat

PIP is very different to DLA. Here's the descriptors.
www.benefitsandwork.co.uk/personal-independence-payment-pip/pip-points-system

It depends how your autism and/or co-morbids affect you as to whether you think you would score enough points.

Yeah, I'm sure people roll their eyes at the online quizzes but I've taken a few and the only reason I'm on the threshold is because I don't score points in the imagination section or lack of empathy section, which I feel can be a bit unfair because there's a lot of things that DO affect me. Empathy was something I learned, not something I automatically have, and I still guess a lot - sometimes people look sad or angry when they're just resting and want a quiet moment!

That's a big problem with ASD. It's a spectrum - clue in the name - and so everyone's affected differently. I haven't really got major sensory issues but plenty have. Some people with ASD can be quite extrovert and social but I'm definitely not.