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

Would help if I attached the photo!

Bertie,

I was having a phone conversation with my parents recently. They said they STILL don't feel that they have it all together and know what they're doing, and that there is a constant feeling of just muddling through and pretending to be an adult.

They are 81 and 83!

On the class teachers looking like they have it all under control: DS's teachers (also in Germany, DS in 4th grade now) looked like that too, but the shambolic teaching from a couple of them later made it clear it was just a facade.

BTW, from three years of experience so far: the one on one discussions are called Elterngespraech, and are usually scheduled slightly more than half way through the school year.

Lechien yes it was your posts I read, sorry not to remember! I think the processing involved in a chain of events is overwhelming, I've had to just close everything down. On optimistic days though it feels like a new start but I seem to go through every available emotion some days and struggle to regulate that.

Yes, re optimistic days!
I had this this morning, saw a buzzard and a deer, everything was so bright and lovely.
But then I'm home, ds1 is at home having school refused again, and I'm feeling all jittery again, and not ready for the weekend at all.

Beautiful

My DDs are home schooled now, know all about school refusal unfortunately, and we've just started online study. Assignments due tomorrow and I've found a new calm approach that seems to be working. Or they are calmer and just getting on with it. Huge difference either way. DS is on October break so lots of exploding Lego sounds in the background too.

I'm currently in a&e with ds2. He banged heads with another child, and as he's so unsteady due to his hypermobility, he fell backwards and whacked the back of his head too. This is in nursery where he doesn't have a 1:1, despite his pediatrician advising he has one.

Anyway, he will be okay, but I'm hot, it's bright, it's loud, and I can't leave. I have a pre panic attack feeling in my tummy and chest all due to sensory overload.

People have brought in food too, so there are too many smells. I'm really struggling.

Oh Hug :(
Hope he's ok and you can get out of there quickly

boots I've also suffered from a worsening of symptoms recently as a result of stress, in fact that's what prompted me to seek the diagnosis. This is part of a post from another part of the forum:

"However, all of a sudden my life unravelled, 3 big stressful negative events happened more or less on top of each other and I wasn't able to cope at all (daily meltdowns, self harming, social withdrawal etc). It took the best part of a year to get myself back on a even keel emotionally, during that year I sought and got a diagnosis of AS which made a huge difference to how I (and those around me) dealt with those stressful things.

Thanks to those stressful events I have suffered (or am suffering) an autistic regression. I didn't realise that's what it was until I read Cynthia Kim's blog posts on her experience of a regression, I had the stereotypical idea of a child losing speech or self care skills etc. Instead my processing speed has slowed right down, and my executive function skills are really low at the moment, when I talk here are noticeable gaps as I forget what I am saying or search for a word, and I have to concentrate to comprehend what is being said to me. My short term memory is shocking. And so on."

I think this has been linked before, but this is a huge (but informative) article on the causes of such regressions. archive.autistics.org/library/more-autistic.html#learningautistic

lechien I love that photo and it does sum me up perfectly.

hugs I'm hoping by now you are done and home, look after yourself and sort out your favourite can't-be-arsed dinner.

We left hospital after he was given a check over.

I spoke to his nursery, he needs a 1:1; this accident could have been avoided, and he's also not fully accessing the curriculum. (I'll hunt down the goose thread to go into more detail.)

He has since fallen head first off a friend's trampoline, got another head bump, and a fat split lip. I feel like a terrible parent.

Hugs believe me, you're not alone. My DS is always injuring himself.

I didn't know regression could include an increase in processing speed, not finding words easily, and short term memory loss. I'm experiencing all of those right now,a standard sentence of mine is "I can't even words!"

Thank you Crohn that's what I was looking for and the article looks interesting, will read again properly later. But I very much relate to the slowing down, not finding words, memory loss.

Hug glad you're home, hope the rest of your evening is less eventful.

It's related to executive function skills (musingsofanaspie.com/executive-function-series/) The easiest way I find to explain it is like computer memory, you have the RAM which is the short term/working memory, when that gets full or overloaded, the computer slows down, glitches, freezes, crashes. So my RAM was pretty full of stressful things and anxiety, and all my EF skills suffered as a result.

Have spent this evening videochatting with a researcher about my experiences of camouflaging as a woman with an ASD diagnosis - surprisingly cathartic

The computer analogy is an excellent one and I have read bits on executive function on Musings of an Aspie, will read more.

It was a year ago that everything started falling apart and we're on the right track now, or a better-informed track at least, but I feel like I'm having to reboot and that needs to be a careful process.

Gumble the thought of video chatting freaks me out but cathartic sounds good!

Freaks me out a bit too; luckily, her camera feed failed halfway through so I couldn't see her any more - much easier

Hug that's just fucking bollocks.

It's not the GP's job to diagnose you or refuse you.
you have rights to a proper and thorough assessment under the Autism Act (can't remember the year).
She has no fucking right to decide whether you deserve to be referred and she should do her job, which is to refer you to a specialist for assessment.

If you don't have the facility for a 2nd opinion, then I advise you to contact tge National Autistic Society to find someone in your local area/trust who can meet with you.
I'm in Kent, and a woman from the KAT came to my house and we had a chat and she wrote me a letter to give to the GP that basically said "I think she's on the spectrum and she has a right to assessment". That meant I didn't have to worry about wgat to describe to the gp, and it also meant they had to take me seriously.
If it's easier, my friend rang on my behalf and asked, and made the appointment.

Oh, is suddenly not being able to find words a thing? I often get this. Perfectly normal functioning adult, then bang one day I can't remember the words to anything, can't get a sentence out etc (I couldn't remember orthopedic surgeon the other day). For a while in medical school I thought I was in the early stages of MS (there is nothing like medical school for turning you into a hypochondriac). Interesting that it's a thing.

How frustrating to not be able to get an assessment because of them being focussed on a different diagnosis. I can see how some things might be misdiagnosed as other conditions, psychiatric/neurological diagnosis is an utter pain in the arse quite difficult

Yep, me too. I forgot spoon once. And water.

And at times of high stress, or when it's really important that I speak, or in a situation where interpersonal demands are too high, I sometimes either start talking very fast to try and catch up with my mind, or lose the ability to speak or even think in words, or my childhood stuttering problems come back, or sometimes (and this is embarrassing) get stuck on a single word - either saying "sorry" dozens of times in a row, or only being able to come out with strings of repeated swear-words.

I'm so relieved to read on here that I'm not the only one who has trouble feeling like an adult. I'm 35 years old but I feel like everyone around me - my friends and peers from school have grown up and left me behind. I don't even look my age either - people assume I'm in my 20s. It has taken me years of hard work and practice to actually know how to run a home. I still can't do it perfectly but I've got better. I suppose it's still a work in progress.

In my late teens/early twenties I also had long episodes (weeks) of catatonia, in which I could barely walk, struggled to cross thresholds, and could communicate with DP only through blinking - once for yes, twice for no, and that very difficult. It was diagnosed as psychotic/catatonic depression and as thought disorder, but this article makes me suspect it was an aspect of my ASD.

Another one here who is always told they look young and has to carry ID to buy age-related products despite being nearly thirty

I just don't do housework It's all I can do to keep up with college, and I really struggle with motivation and sequencing actions.

Has anyone else had experience with catatonia?

Just me then