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

I can do social things if I drink and take DH! But I do limit the number of things I do, work often have 2-3 events a year plus people might have birthday parties or whatever, I might go to 2 events in the year, and that's only if I am particularly close to the people whose party it is.

I used to be a lot more social in my teens, but as life has got more difficult/stressful the social side is the first thing to go.

This will totally out me if any of you are on a particular Aspie women Facebook page:

My appointment was awful. So, the woman (doctor) wants me to have either bi polar, or borderline personality disorder. She was asking leading questions to try and make me fit these categories.

She agreed I have ASD traits, but wouldn't use the female diagnostic criteria, so said some things don't fit, then listed the main female criteria as the bits that don't fit, such as mirroring behaviour, not being able to regulate or identify my emotions, and self harm.

She was condescending, tried to label me as verbally abusive, and said that I have an emotional disorder.

She wouldn't tell me what happens next, even though I said the unknown is a massive anxiety trigger for me. I'll just get a report in about 4 weeks.

I feel shit.

My brother (not diagnosed with anything, but thinks he has depression/anxiety or maybe ASD, or maybe just a shit childhood) tried it but I don't think it made much of a difference to him.

Can I just have a small unrelated rant? I want my parcel to arrive! I hate having to wait for things! Wahhh! (My new chewy that I ordered 10 days ago, they did say it would be 5-21 days as it's coming from USA, but I have a busy weekend ahead and I hoped it would be here in time! Fingers crossed it arrives tomorrow!)

Sorry, X posted, that was in reply to polter 16:05.

hug that sounds awful, which kind of doctor did you see? Any chance of a referral to another professional for a second opinion?

That's what she said, yes.

She refused to acknowledge the diagnostic criteria is different for women, and then because I didn't tick every box, I couldn't have ASD.

I'm just emotionally unstable, and my meltdowns mean I'm abusive.

It's really bothering me, I'm doing so much ruminating, and is brought my mood down even more.

As it goes, a friend of mine has seen this doctor too, and thought she was awful as well.

I couldn't even fake eye contact, I was so uncomfortable.

HugAndRoll - I'm really sorry that happened to you - how awful. I have been wrongly diagnosed in the past with both Borderline Personality Disorder and Bipolar disorder - both of which have been retracted. The last psychiatrist I saw said that in his opinion there is no way I have either of those conditions.

Can you see someone else?

Hug, that all sounds awful.
Can you see someone else? Ask for a second opinion?
I don't know if this was mentioned on the old thread to you, but some of us have had an unofficial assessment with a lady through a charity, she's very experienced with asperger's and sends a very detailed insightful report. Happy to pm you the details if you're interested.

We got ds some chewy stuff from chewigem, he used it until someone (looking at you head teacher!) at his old school said chewing was for babies
I snuck in an order for a chewy thing as I'm constantly chewing my fingernails and picking scabs. When I'm alone I use it, but then bite my nails when everyone's at home, or when I'm driving (I drool if I chew it whilst driving )
I was a chewer as a child, and destroyed my bed. I can vividly remember the lovely feeling of biting the wood!

polter I have:
Muller heart and bubba bangle from gumigem, they were originally DDs, but they're a bit too firm for my liking but it will do in an emergency
A triangle shaped sensory chew, kind of like the P and Q ones on eBay, but I don't know what company they are from, I don't like the material that is made from as it's more rubbery and squeaks on my teeth, I prefer the silicon ones.
the chubes from chewigem which are great texture wise (soft and springy) and I love to chew them, but I sometimes like to put them in my mouth end on to suck, and then I gag if the string touches my mouth wrong. And I chewed through one, lost my necklace with one on, so just have 2 left attached to a hoody (you get 4 in the pack).
So I ordered the no-gloom shroom from stimtastic, that's the one I'm waiting for, I chose it because it's designed to be able to be sucked on.

Having a chewy does help but I don't like using them at work so I do find myself picking and chewing my fingers then. And I do need to make sure I have it handy otherwise I pick and chew without even realising half the time (until I bleed everywhere, that is).

I think it takes a while to get the 'right' one though, chewigem were fantastic though, I emailed them with a couple of questions and they replied and recommended which products they thought would suit me.

I would love the details, please.

PS gumigem and chewigem are the same company, gumi is designed for teething babies and chewi is designed for SN use.

That sounds horrible Hug but it is a common story. Sounds like the doctor never heard of the spectrum.

I mirror people physically.

I do it automatically.

I read about mirroring as a young adult, and started practicing it in a support group deliberately. I would also mirror them verbally, repeating to them what they had said in different words, as the things I had read suggested this also helped people feel I understood them.

I found that when I did it, people for the first time started to say I was a good listener.

Now it's automatic.

That's not the same as it being instinctive, as it is for others. I mirror people in all situations, even when perhaps those who do it instinctively would not do it. It's what I do because as an intelligent person who wants to feel accepted, I found ways around my particular problems.

I have an ASD diagnosis now.

www.autism.org.uk/about-autism/myths-facts-and-statistics/myths-and-facts.aspx

Emotion is mentioned several times on this page. Problems with understanding, naming, and regulating emotions are a WELL-ESTABLISHED part of autism, in adults and children, males and females.

www.autism.org.uk/living-with-autism/understanding-behaviour/challenging-behaviour/self-injurious-behaviour.aspx

Most of this page is about the stereotypical repetitive headbanging and self-biting type of self-injury, but also mentions things relevant to other types of self-harm - note the sections on self-harm used to deal with overstimulation, release of opioids, and dealing with excessive sensory stimulus. If you have learnt a method of using self-harm to cope with ASD that looks the same as self-harm techniques used by people with other disorders, rather than a stereotypically autistic-looking method, this could have been misunderstood.

QueenPig It's an ADHD group, not ASC - but more of an attitude towards child raising in certain (not all) parts of the US which is very different to here.

I'm having a bit of a down day today. Had a horrible experience last night when I went to what I thought was parent's evening but it turns out parent's evening here is not a one to one chat about your child, it's a whole class meeting where all of the parents discuss how the class will be run for the year, only I didn't know, and it was all in German and I didn't understand it well enough to follow anything and it went on FOREVER and after 2.5 hours (!!) somebody noticed that I was struggling and said something sympathetic and I ran out of the room in tears :( They were really really nice, so it's fine, and it's not ADHD related but it's brought up the same feelings which are all getting intertwined because right at the beginning I was looking at the teachers asking and deflecting questions and concerns from parents perfectly deftly, they looked put together and confident and comfortable and it brought up that feeling that I sometimes have of wishing I could be like that. At that time of day after working all day, I'd be on the floor. My brain is usually mush even when I start work. I'm rubbish at dealing with questions unless I'm very sure of the answer and even then I am not always sure of the answer because my brain "filing cabinet" isn't very organised, and I'm just left wondering again, why can't I be capable and organised and sorted and confident like that? When does that transition happen? I'm 27 so I've really gone past the age that I can claim being young or inexperienced at life. And knowing about ADHD just makes me think it will probably never come. Which reminds me of school, I always used to look up to the children in higher years than me and think "When I'm in year five, I'll be able to do writing like that" "When I'm in year six, I'll be really grown up like that". And the year would come and I wouldn't magically be imbibed with these skills, I'd just still be me. Ragamuffin, spaced out, daydreamy, unfitting-in, scrawly-writing me. I'm so envious of those qualities in others.

Ah Bertie, that's their job. If you do something all the time you look like it's working okay.

Jumping back in with a question. I'm sure I remember someone talking on here about their ASD being worse after a period of trauma. 'Worse' is probably not the right word but I can't quite think how to put it right now but I'd like to read more about it. Any pointers?

It was only after my daughters were diagnosed that I wanted to pursue diagnosis myself and, after a really horrendous year of one traumatic event after another, it's like all the niggling traits I've had are now glaringly obvious.

It makes sense that I've been reading loads, accepting lots of things about myself but I've had fairly social, adventurous periods of my life and at the moment I'd happily never speak to anyone again. Actually, I'd happily monologue for hours, I just don't have a single ounce of energy to put on a social performance. Maybe that's it.

Polter I've thought about trying 5HTP, good to hear it might be helping.

Hug that's sounds terrible, I'm so anxious about who or what I might meet when my referral comes through.

Bertie I'm 42 and still wonder at the 'grown ups'

I'm still waiting to feel grown up.
This photo was on FB a while ago and I saved it as it's so true!
Onlyone, I can identify with things feeling worse.
I managed to be fine when life went as I expected.
Things started to fall apart when mil was ill then died, ds became violent and had awful behavioural problems, dh had a stroke, ds1 was bullied and got depressed. It's all ages ago now but I still feel drained and exhausted from it all, and the worry.