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!

Chronic I expect you had a lot of suppressed emotions that had to come out. It is good that you have someone to share them with. I think you are wise to keep your counsel especially with the people who you say don't like you.

Thus far I have not had a particularly good reaction. I have only told a few people and they seem surprised. One lady said she did not doubt what I was saying but I did not seem like I had it. I cried a bit in private over that.

I think it can be a bit of an anti climax too. I was so relieved when I got my diagnosis and somehow thought it would change things and I would "get better" for knowing it.

I am still the same though, still all over the place, lonely and worse doubting that I have it again. I do think that's because I have nothing else to focus on though.

I hope you feel better though for finding out?

At the moment, yeah I feel a lot better. I feel I can be a bit more 'me' in public and I have definitely let my guard down a bit more with my inlaws. They are the only people who were actually surprised, probably because they have no experience of ASD and I've kept the mask up quite a lot with them. Everyone else I have spoken to has had a reaction ranging from 'I'm not surprised' to 'OMG I can't believe you didn't know!'

There is one really good thing that's come from having the assessment/diagnosis- I've been on antidepressants for anxiety a while but I was still having regular meltdowns. The psychiatrist I saw mentioned that SSRIs are the antidepressant of choice for people with ASD, so I switched to one of those, and it's made a huge difference!

I'm glad your new meds are working well.

I had a really similar thing to Allofafumble, I thought things would magically get better after my assessment and all my struggles would get better. Life is still pretty hard but it's early days. At least now I don't lie awake all night wondering what is 'wrong' with me and whether it is all in my head because no-one seems to understand.

This popped up on my FaceTwit or something this morning. It seems like pretty good news . I especially like "Providing a clear pathway to diagnosis and assessment for care and support needs. And that this cannot be denied to a person if they do not have a learning disability."

I repeatedly faced an attitude of 'you've come this far without a diagnosis so why do you need one?'. There seems to be this attitude that if you can manage most aspects of independent living that you don't need any help at all.

I don't understand why the NHS wouldn't help me, surely it's cheaper to diagnose me properly than to repeatedly give me drugs and counselling that don't work? Seems bonkers to me.

What ADs did you switch from/to CrohnicallyInflexible ? I had years of various ADs etc., (even lithium at one point) and am very sensitive to side effects. I've been refusing to take anything for the last year, and my anxiety and depression is still lurking and is becoming problematic again.

Spring, I had terrible trouble with side effects too, sertraline was the worst for me. I've never had any luck with meds. I've heard about some amino acid that's meant to be brilliant for asd. I can't remember what it's called though, it's some letters and numbers. hang on, I'll look it up.

It'sIt's 5-HTP. Meant to help with serotonin production. I might try it out, can't harm anything other than my wallet.

Thank you. Is it prescription?

What, 5-HTP? No, I think you can just buy it. I'm heading into town now so I'll see if holland and barrett sells it.

I switched from lofepramine to sertraline. Not many side effects on either for me, but the sertraline just seems to work better. I do have to take it at night as I was just exhausted when i took it in the mornings.

5-htp could work as it works on serotonin same as some ADs. Don't mix 5-htp with ADs without checking with a Dr first though!

Yes, you are not meant to take 5-HTP if you're on ADs.

They do sell it at H&B, it's expensive though. I expect you'd be able to find it cheaper online. I've just taken my first one so I'll let you know in a couple of weeks if it makes any difference.

DH is on sertraline and hasn't had any side effects, but I had everything going- awful insomnia that they had to put me on sleeping pills for, dry mouth, dizziness, loss of appetite, the works. I've had citalopram with no side effects but it also didn't work so there was no point continuing. I guess it's different for everyone.

It's interesting that a couple of things I read talk about the "seven stages of grief" model applying to finding out that you have a disorder of this kind as well - I can't remember all the stages and they are generalised, but the "bargaining" one in this situation is more about how people tend to fixate, when I get the diagnosis it will be much better, if I can get the right medication it will be fixed. It's about coming to terms with the fact that none of this is going to change anything, it might make it easier to manage, but it's not going to make it go away entirely.

I need to ask a question which is relating to ADHD I think more than ASD but perhaps there is a parallel. Do you find that if you miss a "deadline" then it's like the urgency goes away because you've already lost whatever it was and so just seem to trail on forever?

Two recent (but not the first by a long shot) examples for me: Library books and bedtime.

I have stopped using libraries in the past because of the same issue, but currently because we live in Germany the English language library is obviously a great resource. So I thought we would try it out, and the first two months were fine. Right now I have a fine approaching ~€30 because of five books which were due back on the 29th Jan. I missed the deadline and then because it wasn't "urgent" any more, it was like the increasing fines didn't really matter. They're about to close for the Easter holidays! I am hoping we can get there tomorrow, but still.

And bedtimes - last night I felt tired at about 10, so I was just finishing off some things and was about to make DS' lunch, when DH put the (not) roomba robot hoover thing on and said "Can you stick that on charge when you go to bed please?" I said "Oh no, I'm just about to go to bed too, I just need to finish this and make DS' lunch." He (probably knowing my history!) said "Oh you've got loads of time then". To be fair, it is a cheap one and the cycle is probably about 20-30 minutes before it needs charging, but then I didn't want to get up and get ready for bed and then be waiting for it to finish. It beeps constantly when done, so I couldn't have left it to go to bed. I ended up staying up until 1.30, failed to set my (5.30!) alarm properly and overslept and had to run at full speed to catch my train, where I nearly fainted and/or vomited because I'd then pushed myself too hard on low blood sugar, I hadn't eaten since 6pm!

I mean, it's possible that I would have got distracted anyway, but I'm sure it was that interruption that sort of tipped me out of the mindset of "I need to be aware of the time and go now".

Bertie I hear you on the library books. They used to cost me a fortune! These days I am so distracted I can ha fly read.

I am beginning to realise I have almost all the symptoms of ADD too. Minus the hyperactivity. I spend my days in a fog of wandering around looking for things.

My son is OCD and moves my stuff. I get v distressed when things disappear. He might shove things behind the sofa.

I have been on my own for a few days yet still have had to put the dish washer on four times!

I am slowly going insane here!

hardly read

I have been on and off AD tablets since my late teens. I stopped taking them last November. I feel better off them really. They do give some relief though and many times I have had to go back on them.

I am not hyperactive. If I was going to self diagnose I would say ADHD Predominantly Inattentive. The description on wikipedia describes my life accurately. I read it about a year ago and it blew my mind.

ADD and ASD are often misdiagnosed in women as depression - the depression is a combination of situational depression caused by trying to cope with a very stressful situation ie life impaired by the disorder, and the fact that you are literally bombarded with messages all the time which tell you "You're a shit human being. You've failed. Again. You've let people down. You can't do simple things." Fuck, I mean this is just a punch in the gut every time I try to think about it. I'd spent a long time having these feelings on and off, to be told, oh, it's depression, depression makes you think these things but they aren't true.

Over the years I noticed that people were wrong - the thoughts I was having weren't random, they were happening in response to things. The evidence kept mounting up and I started to think - well - what does it mean when they ARE true? I mean, it wasn't totally irrational, the things I was getting upset over. It was (is) extremely basic stuff that I (still) fail to do, and I didn't know why. The feelings of self loathing were there but I don't think it's entirely fair to say I suffer from depression.

The difference with "pure" depression, if there is such a thing, is that the feelings and despair are really out of proportion to what's actually happening. Treat that at source, with medication or therapy, and it improves. When the cause is that it's not necessarily out of proportion but your life just literally is harder than most people's, medicating it doesn't make it go away. It might make it easier to cope with for a while or it might make you care about it less (I remember reading a post on here years ago where a poster said "Antidepressants didn't make me more able to tackle the mountain of dirty washing. They just made me not care about it any more.")

That's not to say that I don't think ADs are useful in the management of ADD and ASD - I am certain that they are helpful, especially for particularly stressful periods or times when you are working to try and shed some old beliefs which are holding you back. But you can't only use ADs to treat either.

For me, the ADs reduce the background stress/anxiety (the psychiatrist termed it 'autistic arousal'). As the arousal increases, you reach a point where a meltdown or shutdown is triggered. By reducing the background arousal and also slowing down the rate arousal is increased I have more time to react and calm myself/remove myself from the situation before I reach meltdown. So I'm having far fewer meltdowns, and I'm also sleeping better as I'm not lying awake with my heart pounding and worrying at night, which in turn has a positive effect on my mood.

As you say though, I'm sure I only need to be on ADs in the short term. I know I go through phases/cycles where I'm having a lot of meltdowns, usually in response to situations that are out of my control. Then I go through settled and calm periods (sometimes for years) where meltdowns are infrequent, which would be the time to wean off ADs until the next time I need them.

CBT was mildly helpful in teaching me to think things through and not get too caught up in a negative thought cycle. I'm sure it has more effect when the negative thoughts are out of proportion though, and you can logically 'prove' that they are unfounded. When they have a basis in reality, it's a little more difficult, and the therapist was a little taken aback when she'd ask me a question such as 'do you think you would have still been bullied at school if you had done x?' And I'd say 'yes, because...' And she'd have no answer to that!

Likewise with the self harm (one of the main reasons I was diagnosed with depression in the first place). The therapist would ask me what I was thinking when I did it, and I'd point out that I wasn't thinking, and she had no answer for that, seeing as CBT concentrates on changing the thoughts that lead to a behaviour. The psychiatrist that I saw immediately said that it wasn't self harm as such, it's an extreme sort of stim. So now I understand it, I've been able to stop.

Thank you CrohnicallyInflexible a lot of that makes sense and is helpful.

Chronic, your psychiatrist sounds really switched on about ASD.

I saw one in my early twenties who told me to stop wasting his time, stop thinking so much and live my life! Forty years later, it is only from practising extreme avoidance, I have managed to survive!

From what I understood from my GP, the mental health team in my area has weekly meetings to discuss cases, decide which are a priority, juggle workloads etc. As my GP didn't actually know the best way for an assessment to proceed, he put my case to the panel, so I think the psychiatrist chose me- presumably because he has experience or an interest in ASD, rather than me being allocated to him.

Hi everyone, I have been lurking for agesbut thought it was time to say hello.

I am self diagnosed fairly recently although I have had my suspicions about my ds since, erm, forever. This week, for the first time a professional has seen it in him and it feels great frankly that someone sees that he is struggling and I am not imagining it. My family have stopped dismissing me because of this.

I identify with so much on this thread that it would take too long to list. But from the most recent I too have been 'told off' by therapists for over-thinking, rather than it being seen as a symptom or coping mechanism.

Oh god I take back what i said about family support, just had a huge confrontation with my mum. Apparently I'm obsessed with labelling him even though I haven't mentioned it to them in 6 months.

Completely off topic- but BatFoxHippo have you been watching Abadas by any chance?

I'm glad that you're getting somewhere with the professionals. If your family aren't supportive, then I just wouldn't talk to them about it any more. If they bring it up, just say something like 'I don't want to talk about this with you, we'll have to agree to disagree.' If you feel there's something different about your son, then you know him best and that instinct is rarely, if ever, wrong.

Bat I too knew there was something different about my son but he slipped through the net as a quiet child. Years later I see the signs were there.

Even if it is still not right, at least we are aware what autism is now. I had no idea!

We doubt our instincts too much I think.

Yes spot on Crohnically, I namechange a lot and use whatever happens to be on tv/radio at the time.

That is exactly what I said to them last night to try and put a cork in it. I think it is complicated with family because if you have issues yourself, I think parents sometimes don't want to face what they didn't pick up on themselves.

Yes Allofaflumble, I've read on MN that in some ways it is good to have a 'chair-thrower' as atleast the school take notice.