Neurodiversity support thread: Women with suspected/self-diagnosed/diagnosed ASC & ADHD

[EauRouge]

No sign of our own forum yet, so for now here's a new support thread for women on the autistic spectrum and/or with ADHD. Newbies more than welcome!

The old thread is here.

Here are some helpful links for newbies:

List of female AS traits by Tania Marshall.

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

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!)

I took off Tony Attwood because it was about people with autism rather than for people with autism. Anyone else got any book recommendations?

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

If any of those don't work, it's because I'm cooking the DDs' dinner and I'm shit at multitasking. What's that burning smell?

Chron you are describing exactly how I feel! I am worried - but I'm planning to go in with a list of everything I'm struggling with and if they say I don't have ADHD I'm going to ask them what it could possibly be that is making these things all so difficult for me.

When I get my assessment in a few weeks I have a list that runs to 13 typed pages- I think that will be enough info for them! I've also hunted out my old school report cards- although they don't say very much really.

Something I've been wondering lately, as I've been taking much more analytical notice of my parents' behaviour (I think they both have as too), is 'how much of my behaviour is learned and how much is "biological" asd type behaviour'? I was an only child with a very isolated upbringing so I had a lack of other people to learn social skills from. I always thought my parents behaviour was normal. It is literally only in the last few weeks/months I've noticed how 'autistic' their behaviour was/is. Surely this must have had an impact on me growing up? It does give me a bit of hope that if I learned some of my behaviours then maybe it would be easier to unlearn them?

bertie I felt so wretched around the time I went for my assessment, I already was on ADs and diazepam, I had recently finished a course of CBT (and I've been for counselling in the past but found that unhelpful), that I consoled myself with the idea that even if it wasn't ASD, at least a psychiatrist might have been able to help me in some other way, that the GP couldn't. So the referral wouldn't have been 'wasted'.

athena I think the vast majority of our behaviour is learned, either we've copied it to fit in, copied it and found it helpful, or we've discovered something helpful for ourselves. I think rather than 'un learning' behaviours, we need to learn something more helpful in its place.

This could apply to social skills too. Imagine that someone told you that 'How are you?' is rude and should never be asked. But you've always greeted people with 'how are you?'. Suddenly you don't know what to do when you meet people! You want to know how they are but don't want to be deemed rude. Sometimes it's more important to get the answer than be considered polite Sometimes 'how are you?' just slips out from habit. It's not until you learn how to ask 'Are you alright?' that you completely stop asking 'How are you?'

Hope that makes sense, I lost my train of thought somewhere and had to catch a different one.

I've not posted on here for a while but have catching up on it whenever I can.

Can I ask how people went about getting a diagnosis initially? I have been told by consecutive doctors that. . .

1. There is little or no point in getting a diagnosis at my age (37)
2. There just isn't the funding into adult diagnosis of autism so could take years to even get an appointment (I really should've been more pushy with this one) I was essentially fobbed off (I uncharacteristically allowed myself to be) by 2 different doctors from the same surgery

Athena, a lot of what you say resonates . I'd like to know the answers. I find that I make the effort NOT to act in many ways that my parents do (like you, recently analysed and now suspected AS by me) although I have to admit that in some ways , I'm naturally similar in ways to each of them. Some of the things that annoy me the most , I know I do myself.

Orrelly I am 60 and when it dawned on me i had grown up with AS, i went to the doctors.

I had never seen her before and presumably she had not studied my history, but she said she didnt think I could have it.

As I didnt want to waste any more time, I went private. First with Tania Marshall via Skype and then the Lorna Wing Centre for Autism.

I suspect I would still be waiting even if I had pushed it.

Orelly, my gp said the same thing to me, no point and no funding, but referred me to see a mental health nurse, as I said further up, I thought this was about managing my mental health, which is a problem at the moment, but it was actually for a mini-assessment to see if I passed the threshold.
I do, and can now be referred on for full assessment with a 4-5 month wait.

I was diagnosed privately 2 or 3 months ago and feel totally lost now. I have read many positive experiences of adults seeking diagnosis, of feeling a sense of peace or acceptance or whatever but for now it seems to have only made my life much more complicated. I have only told a few people and every conversation has necessitated lengthy explanations about how it presents in women, recent research etc when I don't actually want to go through all the ins and outs of it, I just want these people to say "it sucks that you feel bad, we'll help you to do whatever you need to do to feel better" (which, in fairness, has been my DHs approach). And I hate feeling like I'm trying to present myself as some sort of special snowflake.

We've had special snowflake type comments aimed at us for seeking a diagnosis for ds, like we're wanting a "label" to excuse poor parenting.
It's really shitty of people to do that, I'm sorry it's happening to you Laetitia

Laetitia, I of l quite lonely with my diagnosis. I have told a few people but cannot shake off the feeling they are either disinterested or that I want to be special in some way. After all we are all on the spectrum somewhere (sarcasm).

My family always thought I was a drama queen/attention seeker.

Laetitia- we get it on here. I was diagnosed 2 years ago. I found going through the assessment really hard. I kept going and try to stay as positive as I could. There are 2 books that really helped me: ]www.amazon.co.uk/How-Happiness-Practical-Guide-Getting/dp/0749952466/ref=sr_1_1?s=books&ie=UTF8&qid=1437593203&sr=1-1&keywords=the+how+of+happiness and www.amazon.co.uk/Mindful-Living-Aspergers-Syndrome-Mindfulness/dp/1849054347/ref=sr_1_1?s=books&ie=UTF8&qid=1437593236&sr=1-1&keywords=mindfulness+for+asperger

It also helps me a lot to try and help others. I work in schools and explain to staff the behaviour of children with ASD. I do not tell them I have it because I don't think I can cope with the negative reactions. The world is not quiet ready for us but I want to help change that.
ASD is never easy but it has many beautiful sides and I try and focus on them.

Hello all, drifted off a bit. Anxiety is improving but have had to pretty much withdraw for a few weeks.

I'll have a look at those books too Molly, I'm off on holiday tomorrow.

I'll have a look at the books too Molly, thanks for linking them.

I'm really struggling at the moment, extremely stressed and just don't know how to deal with it.
It usually takes me a few weeks of summer holidays to reach this point, but I've broken records and reached it in a few days. I'm wondering how I'll get through the next few weeks.

Sorry for previous whingey post
Having a better day as we've been den building and ds was happy for 2 whole hours!
I'm also picking up some melatonin for ds later today so I'm hoping that we can have some early nights and start to catch up.

Social echolalia makes sense with both ds2 and me.

Just seen this article on fb
It makes so much sense to me. I've never really had friends. In school it was a problem because it looks weird to not have friends.
As an adult, I have people I occasionally see, but I'm happiest when I spend most of my time alone, I'm not lonely, I prefer it to having to appear engaged and animated, and pretending to be interested in things I couldn't care less about .
I occasionally feel bad about it, but only when someone has decided I should be more sociable and see people more, then I feel I am somehow faulty for not wanting to be with other people.

Polter, yes the in between bits! Ds will go on his xbox, but I start to dread him coming down as he's so angry all the time, which is difficult to deal with.

And ^^ that makes me look rude! I am interested in other people, but in small doses. That's maybe why I like MN, I can pick and choose what I read.

Polter, I think it's brilliant that you can understand your ds so well, do you think it helps that you feel the same?
I was always pushed into social activities which I feel have made me more of a hermit as an adult.
Ds1 is similar to me, and I would never push him to do social hints that he doesn't want to do.
Ds2 however is more of an extrovert and wants to be with people who do as they're told
I can see him doing something outdoorsy, preferably not with guns!

Social things, not hints.

I wonder if an NT parent would focus on things that they feel are important though, which would in turn limit how much the child is able to do.
It sounds like you're focusing on the things that will make your ds successful as an adult, making him focus on NT things may backfire and mean that he is less able in the areas he is interested in, but maybe I see it like that because I don't find the social side of things are important.
Confusing my brain now!

Hi again. I've been following the thread but not posting because it felt like it was against the rules I invented in my head for me to keep posting while I was waiting for my assessment report.

I just got my diagnosis - ICD10 F84.0 Childhood Autism, DSM V 299.00 level 1 - and am not sure how I feel about it. I think I'm a bit scared and a bit relieved.

Molly - thanks for the book recommendations