Support thread for women with suspected/diagnosed/self-diagnosed ASD or ADHD

[EauRouge]

Previous thread here.

Hello all, I know I'm new but the old thread was full, so here's a shiny new one. This is a thread for adult women who have ASD or ADHD, or suspect they do, to support each other.

Here are some resources that might be useful:

Links

List of female AS traits by Tania Marshall.

Article about women and girls on the spectrum by NAS.

List of female traits by Everyday Aspergers

Musings of an Aspie- Cynthia Kim's blog (one of the few sources I have found about being a parent with Aspergers)

Autistic Women's Collective

Recognising ADHD in women from ADDitude Magazine

Resources for women with ADHD from ADDitude Magazine

Adult ADHD support (coming soon by the looks of things)

Books

Aspergirls by Rudy Simone

The Complete Guide to Aspergers Syndrome by Tony Attwood

You Mean I'm Not Lazy, Stupid or Crazy?!: The Classic Self-help Book for Adults with Attention Deficit Disorder by Kate Kelly (I haven't read this one but I have heard it recommended many times- apologies if it's no good!)

Online tests

(Online tests are not 100% certain but can give you a very good idea and a starting point for talking to your GP if you're seeking diagnosis)

RDOS Aspergers quiz (the best one IMO)

AQ test

ADHD test

ADHD questionnaire for women

Info dump complete

Please come and join in!

Hi zingle I have read through some of the old thread, but can't remember if you posted before? Have you just been diagnosed? Did you suspect you had it? What are you going to do now?Sorry for all the Qs. I hope you are ok and have a supportive family.

I'm glad your wait is over at last, you were waiting for the report to arrive weren't you, last time you posted here? How are you feeling about it?

I've been wondering more, and returned with another question! I'm half feeling like I'm clutching at straws (not to have AS) and half feeling the opposite, like I'm a fraud (in thinking I might have it.)

My question is basically this: do AS traits get more pronounced when tired?

I have a feeling the answer is obviously 'yes', but it's the other elements, trying to pick apart what is mere tiredness, what is depression, and what is potential Aspergers.

I am, without a doubt, struggling with depression/anxiety/trauma type issues. As part of this, I sleep badly - unsatisfying sleep and awaking early, worried (then needing to go back to sleep later on), and nightmares. Obviously being tired affects everyone.

Living my day feels like dragging myself through treacle - and that's just the normal stuff like shopping, cooking, cleaning, bathing etc. (for one! + pets) plus a few hobbies ad hoc here and there if I'm having a better day/few days.

Every now and then I give myself a 'bed day' where I prioritise sleep, and hide in bed writing or reading or just whatever. This tends to happen when I find myslef breaking down, crying, unable to cope - I know it's going to be messy if I don't stop and give myself a 'day off life'. It's gets to the point where every time my phone bleeps I'm thrown into anxiety, knowing something is expected of me and I've no more to give.

However it is a bit more complicated than that. For the past week, I have been attempting to have a 'bed day' (getting more emotional, more anxious every day) and finally thought I had a chance yesterday. I felt quite good, really looking forward to it, with creative ideas flowing and wanting to write. However, I wasn't actually feeling 'good' as such because otherwise I wouldn't have needed to hide like that. So it's sort of as if I am only feeling good if I can do exactly what I want! Which is pretty hard to explain to people!! (Weirdly it came up because I had to explain to a friend that I was too tired for company, despite saying I was feeling "quite good". Ended up explaining that I was feeling overwhelmed by life and unable to cope, so needed time to hide to be ok, and he was offended saying I'd lied the first time! But to me, 'tiredness' and 'feeling I need to hide' are the same feeling and each can cause the other so they go hand-in-hand. It's weid because this person has Aspergers themselves.)

Also, the creativity thing causes an issue. I want to write; I have so many ideas. But I can't even say "Ok, I'm going to be busy writing on x and y days" and give myself time to shut off - because I won't be able to write a word. No, it's more ad hoc - if I feel the urge on wednesday to sit up all night writing several chapters, then I need to 'go with the flow' and do it then. It really upset me if someone interrupts because even if I politely explain I'm busy, the spell is broken and creativity goes out the window.

However, I don't remember having these problems to anywhere near the same degree when my mental health was better. In fact it's hard to say whether I'd struggle in this way at all without MH probems, as there's not much time in my life to go on! (I'm 29.) Also, despite being seriously messed up as a teen, I somehow managed to 'keep up appearances' by going to school etc. - I was too scared of being in trouble, thus causing more to deal with (what got me down in the first place was the explosive atmosphere at home). So even though it was out of fear, I did manage not to meltdown/obviously lose it - could this impy there's no AS present?

It's all very hard to work out, and I'm stuck in the middle, knackered, not sure how to explain to people or cope with any of it. It's very upsetting to know I could do something worthwhile, or do something well, but whenever I start to someone wants something of me! So I'm stuck achieving nothing. And not even able to catch up on sleep and get on with stuff later for the same reason! And I do want friends and things, I just need them to understand just how much I'm struggling without having to always look sad and say "I'm horrifically depressed and hanging on by my fingernails". Grr, people, they don't like it if you're always depressed but if you don't show it they forget!

ps. just to add, if I'm being creative and get interrupted, it's the guilt and difficulty explaining to someone that interferes, not so much the interruption itself.

Element, that all sounds very familiar, but I don't know if it's depression or asd.
I was happiest when my dc were younger and I was in control of everything that happened from day to day. Now I have two teens, a preschooler and one with asd it's chaos, and my brain matches the chaos.
When I was at school I managed by being alone most of the time when I got home and either read or played with certain toys (up to an age when you wouldn't generally play with them). I don't remember ever having meltdowns, but I think I have had some in the last few years.
I had obsessions, some have lasted over the years, others (Torville & Dean ) only lasted a few months.

I'm definitely more aspie when I'm tired. Or ill, I think I posted a few weeks back about having a meltdown and it turns out I was gearing up for a Crohn's flare.

The depression and anxiety could be symptoms of Asperger's, rather than illnesses in their own right. Before I started looking into AS diagnosis, I had a diagnosis of depression, then anxiety was added later. The psych who diagnosed me with AS categorically said I am not depressed, it is a manifestation of the AS. I have it in writing on my diagnosis letter. I am also affected by a sort of trauma, by which I mean I perceived something to be traumatic as a result of the way AS affects the way I experience the world, and I am having difficulty dealing with it because the AS gets in the way.

So that just leaves your tiredness. As I said, I am more aspie when tired. For example, socialising and talking to others is an effort for me, if I am tired then it's often just too much. Like you said, being tired affects everybody. But I find I can't process what people are saying to me, the words go in but they don't make sense. And then once I've grasped what they are saying, I can't formulate a response, I might lose my train of thought partway through the sentence, or use the wrong words, like saying 'drink's in the freezer' instead of 'dinner's in the oven'. So instead I spend more time on my phone/ipad. And feeling more aspie leads into anxiety and depression, which affects my sleep, so I'm more tired, and it's a vicious circle.

What has helped me most is a change of meds- the antidepressant I was on before took the edge of the anxiety and sort of flattened my emotions so the lows weren't as low. But with the new ones, I feel much more like my 'old' self, before the trauma and depression and anxiety really started impacting on my life.

And getting a diagnosis, I've started accepting myself for who I am, and I'm much more able to do things that help me without worrying what other people might think. I've even managed to ask for help- something that I usually find almost impossible- my direct supervisor at work is aware of my diagnosis, and when I went in the day after my meltdown and said I was having a bad day, she covered for me at a meeting so I could have time to myself, and gave me loads of admin type jobs so I didn't need to talk to too many people!

Thank you for the detailed replies.

It's making me think of times in my life I've been surrounded by others (like 3 days on a very small boat with about 14 other people I'd never met before) and what that was like, how I coped etc. The answer seems to be I did what everyone else did - curled up in a corner and read for a bit etc. Just perhaps I did it a little more, although it's hard to tell because most of the extra seems to be sleep, if I recall - and I do seem to need more sleep than average!

I didn't feel stressed at the situation though, becase I knew in advance what was going to happen. Even if something unexpected had occurred and it had taken 5 days, we were all sort of a little team together so it would have been fine. This is something else I've noticed - the need for 'head space'/to be alone seems much more acute in daily life, when trying to get on on with things, hold down a job etc - individual things. However in a completely different environment where I'm with others almost 24/7 then the communality of it actually become a nice thing, not an overwhelming thing. So if I'm expected to do something that is a net drain on my emotional energy, I need more 'alone time' and more control over my environment to cope. If the activities for my day are not experienced as draining, I'm much more communally minded/able - in fact almost thrive off it.

As I write, the above, I'm thinking that most of you probably baulk at the thought of a small boat with others, unable to get away for a few days? Which is making me think, maybe I am just in the Wider Autism Phenotype and the rest is depression/not learning how to interact normally growing up/traumatic experiences?

Or is what I've written something you relate to, which would confirm my suspicion that Aspies are actually a superior form of human, who would live in peacful communities without the bullshit? (That is not sarcasm, btw.)

Chronically I know what you mean about experiencing some things as more traumatic because they are more traumatic to that particular person, for whatever reason. I wonder if this could be said of my experiences growing up - although then again they wouldn't be out of place on the Stately Homes thread. However I certainly feel that if I'd received appropriate support when I first asked for help (late teens) I'd have healed back then - whereas in reality I experienced blame, punishment and exclusion, my feelings minimised, told I was attention-seeking etc. (The BPD Stigma thread in Mental Health explains why, if anyone can't believe that would happen.) Also things like homelessness etc., and I just had to keep going, terrified for my very survivial. So it could be simply that I was already at breaking/broken point, which meant anything on top of that would be experienced as traumatic. Apparently chronic, inescapable, stress and lower level trauma can have a more pervasive effect than a one-off big incident. Being able to escape and having social support at the time are the biggest protective factors against trauma.

Hmm...

Thinking about the boat scenario, in my head I would be feeling very conflicted about it, but once there, as long as I could withdraw, I would be ok.
My (very large) family keep making noises about hiring a big house and all go and spend a weekend together. I can't think of anything worse. My head is screaming NOOO! In all probability I will avoid discussion about it then agree to it at the last minute and wish I hadn't. If I go along with it I will need to plan lots of alone time, which could easily be seen as selfish.

Can I ask about executive functioning - I'm not sure I understand what it is.
From what I've read is it day to day organisation, or is it more involved than that?

Executive function: musingsofanaspie.files.wordpress.com/2014/01/executive-function-musingsofanaspie.pdf

In a nutshell, it's mostly planning and carrying out behaviours. So day to day organisation uses a lot of executive functioning, but there are other things too.

I am an executive function disaster area I can't multi task for shit. EF also includes emotional regulation, which I am also crap at. No point telling me to calm down, get a grip, forget about it etc- I literally can't.

I joined the aspie group on FB, don't think anyone on my friends list has noticed yet.

Re the boat, I would probably be ok most of the time but I'd be snapping at people after a while and stomping off into the countryside to make friends with some cows or something.

Thank you for the link chronically. That all makes sense now.
We have laminated lists for ds to help him get on with things.
This weekend dh made me make my own laminated lists so I don't forget certain jobs. I've done more in two days than I have in the last two months.
How come I can organise myself haphazardly to do things I want to do, but simple things that I hate doing feel like such a huge task, even when they only take a few minutes.

I think I'm worse when I'm hot as well. We are having a heatwave at the moment, 29 degrees inside and out. I can hardly think, so remembering anything extra is out.

For years I've been having 'memory problems'- after reading that link I realised I actually have EF problems! Main things for me are:
-initiation (getting things started) especially at home, at work it's easier because it's non negotiable. Maybe a jobs list would help as that makes it non negotiable too
-cognitive flexibility, I do find it very hard to change my mind and will try to change the new information rather than my mind. If a task is interrupted I find it hard to get back I to it, I think this comes under starting/stopping tasks
-attention, but I tend towards hyperfocusing and shutting out too much extraneous information, so I might not hear someone saying my name repeatedly
-inhibition, I don't care if no ones listening I have to finish my sentence! I also stim, echo and blurt things out a lot, and struggle with word retrieval
-and thanks for reminding me about emotional regulation, I really struggle as I tend to suppress negative emotions and ruminate. And I easily get 'carried away' with positive emotions! I have another link here www.aspergercenter.com/articles/Emotional-Regulation-and-Autism-Spectrum.pdf
Anything that makes me physically uncomfortable will have a detrimental effect, so being too hot but also too cold, hungry, needing the toilet, itchy clothes...

Oh, and I 'liked' a page on Facebook so I'm getting closer to 'coming out'!

I have lots of problems with this, but I can manage, just not as well as I would like. Getting started and if I do get started not overdoing it and being unable to stop until everything is done, choosing from an array of things, multitasking. Even though I like practical work I can never work at the speed and accuracy others can. I think this is related. Lists do help although I forget to start them. Keeping track of what has been done, forgetting things while distracted.
I do get tired a lot but not sure if this is AS related or some other reason. I am overweight and not that healthy.

Someone linked an explanation of spoons theory on FB today, for ME/CFS/fybro.
I know I don't have any of these conditions, and I hope that I'm not belittling anyone who does by saying that I really identified with it, especially when it comes to social occasions and jobs I don't want to do.
If I'm doing something I want to do at my own pace on my own I have far more energy.
I will pick up the dc, deal with any anger/meltdowny behaviour from ds and feel exhausted, my ears ring and my head aches. When they've all gone to bed, I feel wide awake and fine.
Perhaps I'm just allergic to them, the little dears :o

Spoons theory doesn't quite work the same, because spoons are about energy, but I know exactly what you mean :) I would say that whereas perfectly healthy people have a normal amount of spoons, ie quite a lot, and people with ME or chronic pain (etc) have a small amount of spoons, it's more that when you have a neurological issue, you have a normal amount of spoons, but certain things "cost" more spoons than they do for NT people. And an ADHD person is always losing their spoons

It's not really the same, I don't think, because unless you have a chronic fatigue or pain condition, you can't really understand what running out of spoons means. It isn't the same. Having a meltdown, or feeling drained or needing to stay in bed, however unpleasant, isn't really the same as a chronic pain sufferer having a flare up. And of course it's possible to have a chronic health condition and ASD, or whatever.

I think spoon theory is helpful but I would be cautious about using it to refer to ASD or ADHD :)

Yes that's it, I knew it wasn't right to compare, but you've written what I was thinking and was unable to write :)
(very sorry if I have offended anyone, it was a very clumsy explanation)

I think part of the difference is that it is mental energy rather than physical that is affected, of course the mind has a big effect on the body so you actually can feel physically tired and need to sleep, but it is different to the physical tiredness from an illness.

Hello all, gone a bit quiet!

Can I moan about change? I know change is inevitable and a part of life, but I hate it. I accept there will be changes thrust upon me but I don't like making huge changes myself. DH would like to move. Not just house but 5 hours away from here, nearer his family but away from mine. I have supported him applying for a job over there but am already getting comments about how I'll probably be loathe to go if he gets it. But I don't want to go! I like our house, I love having my sister and Dad nearby. Dad has Parkinson's and is ok for now but will deteriorate and I want to be able to support him. What's wrong with wanting to stay put? I'm made to feel like it's such a terrible thing to be resistant to change :(

There are quite a lot of mentions of the spoon theory on the Aspergers group on FB. I thought it was something to do with The Matrix at first or possibly Alanis Morissette.

Flying home today. I'm really worried about how DD1 will cope with the flight, she's been so overwhelmed on this holiday. We were at a restaurant the other night and it was very crowded so she asked to go somewhere quiet. They were blasting out loud music in the loos (why?!) so in the end we had to box up our food and go and eat in the car. Poor DD1.

Hope everyone is doing OK.

ALittleFaith, I know what you mean about change. even when it's wanted, it's difficult to cope with. I hope you manage to resolve things.

Can I ask which group it is on FB?

ALittleFaith, that sounds like a difficult situation, I can understand why you don't want to move.

Good luck with the flight Eau.

ALittleFaith, I hate moving but that is so stressful with your dad's situation. What are the positives?

I am feeling guilty. I have been out all day trying to exhaust ds and letting him do lots of "big" sensory stuff, chucking him around and letting him swing into me etc. Now I just want to sit for a bit but he's been climbing all over me and poking me in the face (which sets me into a rage but he just won't stop, every fucking day) and I shouted at him. Its bedtime and he's trampolining.