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!

Yes I do noeuf, it'll pass soon!

I can understand that you need a diagnosis. If you can afford to do it privately I would do that.
I'm in a position where I don't need a diagnosis, but I'd like to know.

Yes, if you are working then an official diagnosis will give you some protection at work. I've never been the employable type and I don't claim benefits, but I might go for an official diagnosis one day.

I think it would have helped really. I'm finding it very hard due to a change in role.
Does anyone else get really stressed when people don't act the way you think they should? So you feel you've tried really hard to accommodate them but they are angry or upset?

LeChien - happy sleeping

noeuf yes, I feel that I am 'right' and they really feel what I think they should, and they are misleading me! So if someone is angry/upset and I think there is no need, I figure they're being a drama queen. If someone's acting happy and I think I've upset them, I figure they're covering up to save my feelings, and so on. Really stresses me, and I will push 'are you sure you don't feel this way?'

I have a question- do you find that you just want to talk about AS all the time to people that you've told about your diagnosis? I told someone at work a couple of months ago, and since then I've talked about it with her lots of times. Things like discussing my difficulties at work and home, I asked her if she had any inkling before I told her, joking about it. I was the same with my husband at first too, but it's eased off a bit with him.

Yes, I probably talk about AS more than anyone wants to hear but after 33 years of trying to figure myself out and then FINALLY getting an answer, it is such a fucking massive revelation that it's hard not to. Everything is suddenly clear. I wonder if this is how NTs have always felt.

Finally got to see the doctor today. Scary but I did it. I got a bit of a mixed response. She mentioned two centres nearby which can diagnose - apparently "there is a test" which sounds a little ominous/simplistic, but they were proper neurological centres, so presumably not.

Anyway that was where the support started to fall down a little. She feels that because there is no set/specific treatment, even with a diagnosis I'll be in the same place I am now, so no better off. (I disagree, because there are treatments for ADHD even if they are experimental. But anyway.) She also said (rather disappointingly) that she feels it may be because I don't have a very scheduled life. In true German fashion she feels that a proper schedule, three meals a day, enough sleep, fresh air and exercise will help and that I just have to learn to do this. She was sympathetic and said that it is hard to learn and lots of people struggle, but she wants to try this first. She did say she'd support me to go and take the test if I want to.

I feel a little bit dismissed, but I've decided to give it a go - the first thing DH said when I told him was "But you never stick to your schedules." Which, well, was my initial reaction too. So perhaps trying will help - either it will work, and I'll be much better able to cope, or it won't work/I'll find it really hard to stick to and it will give more fuel to the argument. My next appointment is in six weeks so I've made the timetable today, and I've got a diary that I bought but haven't used yet (halfway through the year!) so I can note down how it goes. Really NOT looking forward to getting up at 6.30 every day of the week including Sundays, ugh, but in the name of giving it a good go I'm going to try it.

Do you think you had an idea of how it would go and that didn't happen so 'it's all wrong' Bertie? I know if something doesn't go how I want/imagine then I write it off as appalling.

No I don't talk about asd except to people who might be useful like dm. As she may come to an assessment and has offered to pay half.
The rule is if I haven't been diagnosed I don't have it.

Hi, thanks for directing me to this thread.

It has taken me 2 days to read through it all and that's without all the links!

I've known I was on the spectrum for years. DS is, I'm sure DM is and I think DF might be too. DP is a saint for putting up with us all.

I'm seeing a trainee psychologist atm and want to use this as an opportunity to get a referral for a diagnosis. I'm seeing her because I've got such an extreme touch phobia I'm refusing medical treatment I need. Hopefully something good can come from being 'in the system'.

If I can actually get an assessment I'm pretty certain I'll get a confirmed diagnosis. I'm really not functioning very well. DP is effectively my carer. It takes him longer to get me up and out in the morning than the dcs! I've never held down a job longer than 13 months (middle aged), with lots only lasting days or weeks. I do have friends but they are either 'oddballs' themselves or we share a special interest. I can only do one at a time and I often have big fallings out. I've always been thought of as 'weird'.

Something I've not read on this thread and would like to ask about is: has anyone heard of 'autistic regression in adults'? I've seen a couple of blog posts on this but most searches lead to info on toddlers. I ask because there was a time when I was a lot more functioning than I am now- had a ft professional job, cared for a toddler on my own, had a social life (although fuelled by alcohol). But at some point, after some difficult times, I seemed to lose all these abilities and 'regressed' into a more 'childlike' state.

No, I wasn't really sure how it would go and I was really nervous. I felt stupid and I think I was assuming that I'd either really have to defend myself/they'd say it wasn't real or that it would be a matter of fact "Okay, go to X place and speak to them." So I am glad that she's said she'll refer me if I want the test, but I suppose I've accepted the "well, just try this normal organisational technique first" as my due. Which perhaps isn't right. But in the scheme of things, I'd rather give anything a go at this point.

Athena - hi :) - there was an article linked a few pages back which was called something like "Are you getting more autistic?" which talked about regression in adults, what it looks like and potential reasons.

Chron - yes I want to talk about ADHD all the time. I find it really fascinating. I like to talk about how it affects me specifically and how that relates to things I've read, etc. That's why I find this thread really useful. And the facebook groups etc. I only have one friend in real life I can talk to about it, I find others are interested to a point and then tend to glaze over a bit, which is fair enough, I suppose!

Bertie, glad you got your appointment. Have you ever given schedules a good crack before? If so, how did it go?

Athena, hello I have got a really good link about autistic regression but it's on my computer and I'm on my phone. I'll post it in the morning. I was told by a psych nurse that I couldn't have ASC because it 'always gets better over time' but I have since found out that that is bollocks. I cope less well than I used to.

I've only told 3 people about requesting an assessment and I'm not sure any of them think it's true yet. I want to talk about it here!

I do think it would help with my work in terms of management. I'm incredibly stressed where I work - but wear a mask to hide it most of the time - and wonder if a diagnosis might give me cause to request a transfer. I keep applying for jobs but I'm not getting anywhere.

Re what people were saying about obsessions...mine come and go. I get totally into something, obsessively watch things, read about things, get new passions, then lose interest.

Can I ask about concentration? I both struggle to multi-task and yet can't help myself. I never watch TV without doing something else, playing on my phone, doing crochet. I'm never still.

I don't know really, regarding schedules. I suppose I've never really gone the whole hog, I've done it a bit half heartedly. Either I've tried sleep/wake times (although I hate hate hate the idea of not being allowed to lie in at weekends) or I've tried mealtimes or I've tried scheduling showers, etc. I might have done a full timetable but it would have been back when I was a teenager, and I don't remember.

I am a little bit concerned that it might not be long enough - I know that in the past, previous enthusiastic "This'll fix me!" attempts at scheduling, even if not complete, have started off okay but trailed off and I haven't really noticed that I've stopped them. In fact not only scheduling, but anything - a drive to always be on time, a pledge to do more housework or play with DS more, but shorter bursts work better for me. At every school assessment from the start until year 9 SATS, I was getting the highest marks. GCSEs I coasted through, 5 Bs, 4 Cs and 3 As. Impressive, but not my best. Since then I have dropped out of everything except for a twelve week course which I blazed through and excelled. I'm really convinced it was because I didn't have ANY wiggle room on deadlines and that the course wasn't long enough for me to lose steam.

Then again, we'll see. It might be as depressingly early as 2 or 3 weeks that it gives out on me!

ALF are you asking about ASD or ADD? Because all of your last post sounds more ADD to me, though I could be wrong!

Well, if I'm honest, that's what I'm wondering?! I used to get told off at school for day dreaming!

Bertie I like schedules. I really like working set shifts because the work varies but I have an idea of what to expect and can plan my days off around them. However I can get too immersed in them and get more stressed if I can't keep up with them! Housework and exam revision schedules spring to mind.

Well done for going. Massive step forward :)

I'm a shit multi tasker too but I can't help myself. I'm always on my phone or looking at a magazine while I'm watchig telly, or tidying up while I'm cooking and then forgetting and ruining the dinner. The only things I can focus on are my special interests and I can do that for hours.

There are a few overlaps between ASC and ADHD in terms of executive function difficulties and it is fairly common to have both.

It's weird - I used to be a bit obsessed with timetables and I'd spend hours making them up with my sister (we had a really long running game of "boarding school" which went on for years and years) but then I mentally run screaming from the idea of a routine, anything repetitive, I hate the idea of it. Even though in fact if I wrote down everything I do over the course of a normal week, you'd see a lot of patterns emerge. I think I'm really spontaneous, but I'm actually a creature of habit. And then my ADHD friend pointed out to me that once you have the timetable, you don't have to be anal about it, in fact having a timetable frees you, in some ways, to be more spontaneous. Without it, I can blow off the grocery shopping to do something else, but if I know I'm supposed to do it at X time, I can let something else interrupt, but then I am aware that I have to reschedule, rather than assuming I can do it "later" and it just fading away and disappearing from my radar entirely until we run out of food.

I think that my biggest turn off to routine/schedules comes from when DS was a baby and I totally rejected any advice to get him into a routine. It turned out by the time he was one, he insisted on a routine and was so much more settled with one. It drove me crazy! But it's a mental block, really. I realise that my friend's advice makes a lot of logical sense.

True Eau. ALF - look at the articles in the OP from ADDitude magazine. I find them really helpful. I did identify a lot with the ASD list, but some parts of ASD literature feel totally off to me. And a lot of people's personal experience in the thread, I don't relate to (but others I relate to a lot.) I find the ADDitude articles resonate much more closely with me. But you do have to look up the differences between inattentive type and hyperactive type, because I never would have considered ADHD as a thing because the hyperactivity just isn't me, although I do fidget, and do the compulsive multitasking, and never stop talking, and...... Anyway my point is a lot of articles do contain components from the hyperactive type, so you have to do a bit of filtering out the bits which don't apply to you.

My sister and I also had involved story lines - we ran a shop and a café in the garden!

I just read that link and it rang very true!

Here's the article: I seem to be getting more autistic.

We had loads - alongside the boarding school game there was a Harry Potter universe we could access by sticking our heads into our pillows, there was a game we called "the king's courtyard" where we had to sneak past a guard to retrieve a ball we threw into the courtyard, and then be discovered by a lonely princess who had no friends, so she'd sneak us around the castle in order to play with her. Our soft toys all lived in various different addresses around our bedroom, which were all the different shelves and beds, there were marriages and inter-family relationships, including a polyamarous marriage and several businesses. We played often until I was about 14 and even then occasionally until I was 15 or 16 and became more interested in goth music and writing fanfiction DSis would have been 13 by that point so probably getting bored of it, too.

Thanks, eaurouge lots of that makes sense.

Thinking about all of this is making me remember so many incidences from my childhood/adolescence that now are obvious signs of aspergers/asd.

Like once when I was 11 there was a knock on our front door. My parents asked me to "see who was at the door". So I went and opened the door, saw who was there, closed the door and went back to my parents to tell them who was at the door. I remember this so clearly because they told me off and I got very upset because I couldn't understand why I was being told off when I'd been a 'good girl' and done exactly as I was asked. I just didn't 'get' it. They thought I was being deliberately difficult but I genuinely thought what I'd done was correct.

I'm now remembering loads of incidences like that.

Violet, I have had that conversation with my mum. She has so many examples of me as a kid and can't believe no one knew about it then.

I can't talk to DM about it. She doesn't believe 'invisible' disabilities like asd/adhd/dyslexia etc exist- she just thinks they are 'excuses for bad parenting' [shocked].

I'm worried that someone up thread said part of the assessment is given to a parent to fill in- there's no way I could ask her.

She has lots of traits too, I'm sure she'd 'pass' the assessment but she's such a rigid thinker (ahem) that it's not worth raising the issue with her.

Does anyone else think they have an asd DM? I hear people talking about dad's but not mums.

I was really worried to tell my DM about Aspergers but when I showed her the list of traits, I think she had a bit of a lightbulb moment of her own. We don't really talk about it though, we don't have deep and meaningfuls.

You can be diagnosed without parental involvement, people in their 60s and 70s are being diagnosed. You could take your DH or a close friend maybe? Or they can probably diagnose without input from anyone else.