Neurodiversity support thread for women with diagnosed, self diagnosed or suspected ADHD and ASC

[BertieBotts]

Continuing the good work of the lovely EauRouge :) Our first thread in the shiny new section. Seems like they created it just in time for us to fill up the old one

Link to the previous thread

This is a support thread for any posters who feel that they might be (or know that they are) on the Autistic spectrum or have ADHD. Feel free to jump in! Some of us are diagnosed, some not, some trying to work out what it's all about. Women with these kinds of issues often present differently to men and as such, can go undiagnosed for a long time. Hopefully, we can help each other understand ourselves and be there for support along the way too.

Links

List of female AS traits by Tania Marshall

AS traits in women and girls by Everyday Aspergers

Musings of an Aspie - Cynthia Kim's blog (Noted as being one of the only sources of information about being a parent with Aspergers)

Autistic Women's Collective

Women with ADHD by ADDitude magazine - this is a really good website in general (though it really needs a redesign). Lots of good, well researched info on ADHD and especially ADHD in women and girls. Do follow the links to other articles. They also have a closed facebook group which is good for info (FB is down so can't put the link up.)

Books
Aspergirls by Rudy Simone

You Mean I'm Not Lazy, Stupid Or Crazy?!: A Self-help Book for Adults with Attention Deficit Disorder by Kate Kelly. (This is available as a PDF somewhere online but I can't find it now - sorry!)

Speakers

This is a new one but it's something I've found really helpful so I hope nobody minds me adding it. I won't link directly to videos because they show up in the thread, but worth searching youtube/Ted/google:

Russell Barkley: Clinical Psychologist who specialises in the subject area of ADHD. He explains it better than anybody else I have come across and has practical solutions to support life with it. He is VERY long-winded, but his talks are packed with info. Highly recommend.

Ned Hallowell: Another psychologist who actually lives with ADHD himself and has interesting insights. Author of the book "The ADHD effect on marriage". He is a little bit cheesy but worth a watch.

Sorry I only have ADHD links to put here but if anybody knows a good ASC speaker, feel free to add!

Online quizzes

Of course no online quiz is sufficient for diagnosis, but can be a useful signposting tool and a starting point for discussion with your GP.

RDOS Aspergers test

AQ test

Adult ADHD screening test

Symptom checklist of ADHD in women

Hi all. I disappeared (been a bit consumed by RL).

I'm still struggling. Hating work. Just found out someone I thought was my mate at work actually bitched about me behind my back because she was jealous of me. Makes you wonder who you can trust.

Re clothes - I'm really particular about the feel of clothes. I'm happiest in joggers and hoodies or pjs - but the right pjs! I really only have two sets I like.

I love repeating patterns - like the shelving. At work I have to sort out the paperwork, including putting address labels on each page. I love it. It's my favourite task!

I would really enjoy an admin type job. I love my work at the library though - it's just that I'm not physically well enough to manage the manual handling bits which is why I'm off sick. I found the customer service bit really hard at first but I think I'm pretty good at it now - still find it tiring mentally, but I have great relationships with the customers. I kind of think of it like an algorithm with different responses for different situations. The only thing I really don't like is when some customers (and some colleagues actually) stand far too close to me. It freaks me out but I don't feel able to say so.

Faith I'm sorry you've been bitched about :( that's horrible.

Just wanted to update quickly as I actually emailed the person who assessed me to ask for reassurance (she said it was fine to email any time) about what my manager said, and she was as confused as I was - she clarified that they had no actual right to know about my assessment, so they were out of line in having a go at me. I wish I had the guts to bring it up at work but I just don't. You know what, I feel like they think they own me and that's why they want information about everything. I tell them everything about my physical health because they need to know it but it's like I have no sense of self with them, they think they have the right to every single thing :(

I don't know Polter there are a few little things that have happened that shouldn't have (like when I had to go home sick after only a couple of days back, and one of the deputies - NOT my line manager - sat me down before I left and told me I needed to really think hard about what this absence meant - totally out of line!) but I just don't have the strength to fight them :(

I didn't realise you worked in a library fuzz! I actually didn't prepare for my interview because I was still amazed at being diagnosed 4 days earlier. I didn't even try to come up with one example of my skills beforehand.
Anyway, re: bringing things up at work, I agree with polter over the email. I had a problem with a member of staff once and wrote about it to my manager even though I was seeing him daily. Just stating facts, like 'dear xxx, I thought it might be useful to clarify that while I understand you personally would have preferred to know about my diagnosis as soon as it was made, it has been confirmed by my psych team today that there is no legal requirement, and therefore no timescale, for me to disclose it.
Of course, Employers are not required to provide adjustments to conditions that haven't been disclosed yet.
I am satisfied I acted properly when I chose how I disclose the news, and hope we can carry on working ...' (I don't know about the rest.., English not my first language, so probably no good, I usually ask XP to make my writing smoother.)(hope it doesn't sound pompous, I cringe in advance if it does! I'm annoyed that I can't make this better.)
Feel v free to ignore, especially if you just want to move on.

It's the dishonesty I hate. I have a colleague who is unpleasant but there's never been any pretence of us being friendly. I genuinely thought this other colleague had my back. That's what hurts.

I think I'd like working in a library. Even when it's busy it's quiet. Everything has its place. My workplace is noisy and messy!

Had an extremely proud moment today went to ds1 statement review he had some WRAT test which basically test where he is in line with his age range in the country he's in top 13% in reading, top 10% in comprehension and top 9% in maths the are looking at moving him into gifted and talented.

Aw that's fab Iam! Well done to DS1 :)

I know just what you mean about dishonesty, I find it very hard to understand why some people can be so two faced. I have really struggled with some people's attitudes to my illness, and to home ed as well.

On a more positive note does anyone know of any notable people with autism who've done something really brilliant, made a difference etc please? I'm thinking of doing a project on it. (Cryptic sorry but don't want to out myself!)

And thank you mountains that is a brilliant template for an email I just wish I had the guts to stand up for myself. I saw my colleague today though and she was incensed on my behalf which helped - it was really good to talk it through.

Thanks everyone

Fuzz have you ever heard of temple Grandin she's an inspiration to a lot of people. There videos on you tube of speeches she did. Shea a public speaker author and video director.

Lovely news Iam :)

Fuzzpig, I ds has a book about famous people with autism, there are names like Dian Fossey, Nikola Tesla.
There are some actors, I'm pretty sure I read that Kristin Stewart has asperger's, and Dan Ayckroyd and Darryl Hannah - not sure if actors can be claimed to have made a difference though?
Nikola Tesla was an amazing man though.

Had a stressful day today, dc's school has been in lockdown when several dc collapsed during a remembrance assembly. The first I heard was when a neighbour came round to tell me the school was swarming with fire engines, ambulances, armed police etc.
School sent out no information at all. I hadn't been contacted so I knew my dc were ok, but had no idea what was going on, and could only read the vague updates in the news.
Turns out they think it was a combination of overheating and mass hysteria. Ds1 and dd are fine, thankfully.
I'm still struggling to keep myself calm, with earplugs and ignoring everyone!

Thanks folks :) I remember learning about Temple Grandin so would definitely talk about her!

Interesting about Tesla - DH mentioned him, he's actually DH's favourite scientist, but presumably anyone who lived that long ago could only be speculated about as autism didn't exist as a diagnosis then IYSWIM? I was wondering about focusing on modern people but including a bit on 'people who probably had it' like Mozart etc.

I'm also waiting to read Neurotribes which should be really helpful. Is the book you your DS has something like Autism Heroes? That's the one that came up when I searched amazon anyway (and it's now on my library account wishlist to reserve later) :)

Crikey Phil that sounds immensely stressful!

(errm I just realised that probably sounded rude what I said about the people in the past and stuff, wasn't meant to at all! Very grateful for suggestions!)

The book is called Different Like Me. (And actually I don't really like it, it doesn't grab the reader - I know it's aimed at children, but it doesn't hit that spot either, ds hates it!)
Neurotribes is brilliant, well worth the read.

Thanks Phil :) I'll get it from the library at some point and use that as a starting point.

But at the moment I'm still waiting for confirmation that I can actually do the project. I emailed the relevant person to suggest it, and they emailed back straight away saying they liked the idea, but then I realised that if we have any idea whatsoever, even if it's tiny, we have to ask management first [sigh] and when I've made that mistake before it's been used as a massive stick to beat me with so I really don't need to make that mistake again. :( So now I'm nervously waiting an email back from my manager. I have a horrible feeling she will say no just because she can, because of everything else that's happened with me and work lately, but I'm hoping I'm just being paranoid. I just hate the uncertainty especially when someone's response feels so personal.

Ohhh FFS my mum was telling me how she was talking about my childhood with my grandma, they were talking about how I never had tantrums... apparently that is down to good parenting because in their generations no child had tantrums because they were brought up not to.

No, couldn't possibly have anything to do with the fact that I was completely shut down. Or perhaps, you know, due to the fact that I was being sexually abused and therefore trained not to move. No, course not.

I wish they got it.

On a more positive note, I've had a message back from management and they are happy to let the project go ahead if the relevant people are happy. So that's cool. I've also been asked to a social dinner thing with other home ed parents tonight - exciting but a bit scary! I know enough people going but I know it will be quite tiring. Thursdays are usually tiring anyway because while the DCs have their sports clubs all the parents sit outside and chat - it's really nice (totally unlike the school gate which I always hated!) but it's very loud!

Fuzzpig
Sorry for what you've been through.

Good news about the project, pleased you've got the go ahead :)

Poltergoose referred me to this thread. Hope it's okay for me to join in. I had an assessment for ASD today and I've left it feeling a bit raw and confused.

I posted a thread on chat about my concerns about the assessment - my parents were being difficult about it and holding back or "forgetting" things that were asked about on the Development Questionnaire.

I went to the assessment today and brought the form that my parents had filled in, but explained that they had purposely held back on stuff or just couldn't remember stuff, but that I could remember things and could fill in a lot of the gaps. The people doing the assessing had a look at the form and agreed that the form wouldn't be very helpful, but they didn't then ask me the questions, even though I had told them I could provide the information. They just asked me about work and about my family, but after I had given some history one of the assessors said he felt I was holding back on him and that I was concealing something important, because he was sensing some serious masking. So eventually I told him about some stuff and he said he'd thought as much and said he couldn't assess me for ASD. He said that from the teenage years on presentation for PTSD and ASD are almost identical, and he said that he felt I was definitely suffering from PTSD and that that would make separating those symptoms and any ASD symptoms impossible until the PTSD was sorted out.

I was told that he had noticed a deliberately light and bouncy personality masking some extreme anxiety and that there was an obvious incongruity between my maturity and my intelligence; that my youthfulness and immaturity were very marked. He said that PTSD seemed to have caused my emotional development to stop in my teenage years. I'm being referred for specialist counselling.

So now I just feel...a bit rubbish. I had gone to the assessment thinking I would get an explanation for my "me"ness, and I suppose I have been, but it seems that explanation is just "sorry, you are just weird and immature."

Sorry for the essay - I just had to get this out somehow.

Not at all- he's saying that you aren't weird, you're definitely not NT, you haven't developed 'normally' but he can't tell if it's 'just' PTSD or if the PTSD is masking ASD. So did the developmental disorder stem from birth/neurology or later as a result of trauma.

So best case scenario- you go down the specialist counselling route, PTSD is treated and you can work on developing your emotional maturity and become 'normal'.

Worst case scenario- after counselling it is felt that you do present ASD symptoms and you're re referred for assessment

Yes, Poltergoose that was me. I think I just found it quite frustrating, as there was a lot I could tell them about my childhood development, but they weren't really interested in my recollections, even though mine would have been far more accurate than my parents'!

Am I still allowed to post on the thread?

For assessment do you really need your parents input? I have no chance if I do my parents won't entertain it and the 2 times I have mentioned it I was told to stop going on and on about it. Apparently according to Dh they were both shaking the heads at me and pulling faces I never noticed.