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?

In fact, just out of interest I did the Edinburgh things again. I am most definitely not depressed at the moment, I have a pretty positive outlook, feel happy most of the time and I'm on antidepressants which are keeping the worst of the anxiety at bay, and I still come out well into the 'depressed' range.

I guess part of it might be an autistic black and white thinking style, it asked if I had cried in the last 7 days and I had to say yes even though I cried for a genuine reason (friend's leaving do) and almost everyone was in tears... Maybe the question should ask if I had cried for no apparent reason (but then I'd have to say no even if the reason was something silly like DH eating the last biscuit).

I hate multiple choice questionnaires.

And while we're on the topic, I've been looking at whether I'm eligible for PIP, I can't decide because some of the categories are weird. Like I need support to be able to reliably socially interact, using the official definitions of 'reliably' and 'social interaction'. But then they give points for needing 'prompting' or for needing 'social support' from a trained professional, but there's nothing in between, nothing for needing a familiar adult not necessarily somebody trained, just somebody that knows you.

Chron, I seem to have a lot of internalised aspie stuff, but don't show it on the outside (very like ds2).
She also asked about friends, school and family.

I think I'm depressed at the moment, and anxious too, but keep trying to hold it in.
I'm scared to go to the gp though, I did go last year and admitted how low I was, and how difficult I was finding everything, but they suggested I found more support and that was that.

I'm currently awaiting assessment (both a psychologist and my gp think I should be assessed). This has come about because my medical phobia/anxiety is interlinked to the hypersensitivity and communication difficulties I have which are part of my autistic 'traits'.

It has probably me not 'functioning' in this way that has triggered the assessment process. There wasn't a specific medical need before.

They seem quite positive about there being ongoing support if I 'pass'.

My DS is almost certainly the same but I've decided an assessment would be of no benefit to him, not atm at least. He doesn't need any support. He's difficult to live with but does well and is happy at school. I don't want him to carry a label unless it is somehow going to benefit him.

I was just about to post something along those lines but refreshed first and there you were polter.

In addition, a 'label' can benefit just because you know why some things are harder than others.

You might not necessarily pick up if DS starts to need support, I managed to hide my school and social difficulties from my parents because I was scared of getting into trouble.

And if you are diagnosed, you can choose if and when to disclose, you don't get a big neon sign announcing it to everyone you meet, so if you don't feel it will benefit you in a certain situation, eg you are scared that people will be prejudiced and think your son is going to be 'trouble', you don't disclose.

He is aware of his 'condition'. We talk to him about it regularly. We have given him books to read on it. He knows it's the reason he finds some things harder.

Tbh I think most of his teachers 'know' anyway. He breezes through school academically and socially. It's at home he's trying and a diagnosis isn't going to help us with that.

We fought for a dx for ds when he looks fine at school, we're hoping that some more understanding in school, and certain things put into place, will mean that he's calmer at home.

Did you find it harder to get a dx when your dc were fine at school PolterGoose and LeChien? It's really interesting about your ds' presented subtlety how girls usually do. Can I ask in what way this was? I find it fascinating how girls can mask so well. How do they know to mask it? I feel I have been faking it forever! Everyone who knows me sees me as this bright, bubbly, happy person but on the inside? I just want to be on my own and curl up into a ball! lol

ChronicallyAspie can you explain all of that when you go for your pip assessment? I have no experience of the pip process, though I have read about teens crossing over to pip and going from high rate of DLA to not being eligible for pip at all based on the ridiculous points system!

Athenaviolet I second what pp's have said with regards to a dx. I don't see it as a label with my ds. What it does mean is that more doors were opened to him in terms of support and funding. More departments could get involved with him. Made the DLA process really smooth for us first time round. When it's confirmed, you can look at information more relevant to your situation. I just think it helps and it's something you can present to his teachers so they know, too. Saying that, my son is not even 3 yet so different than for your older boy! :)

Thanks for the book recommendation PolterGoose I will definitely find a copy. I think you are right in that I've been panicking thinking I have a personality disorder and an anger problem and just really emotionally unstable but the more I read, the more I realise that my general feelings of hopelessness and crying for no reason could be in part to not having autism recognised and just a lifetime of not being understood or feeling like I fit in anywhere.

Does anyone else have a problem with using a phone?! If I get through to voicemail or answering machine I have to hang up quickly, heart racing, and talk through my message or write it down before doing so! This usually takes so much time that by the time I ring back, someone's there to answer the phone and I'm still left wrong-footed!! (This MAY have just happened to me this very morning when ringing SALT!!

Mj, we ended up going private. Ds met the criteria for ASD in the diagnostic interview and his ados assessment, but because he appears NT at school (excellent masking skills) they rejected a diagnosis.
In school ds shows very subtle signs, but you have to know him really well to recognise them, things like body language, his face goes expressionless and still. In a classroom with 20 other children, it's not something that a teacher will notice. He also gets a little defiant and giddy when there are lessons that aren't routine, but nothing that's difficult to handle. He has friends and appears to be fine socially (at home he has no friends and finds social occasions very difficult).
Anyone qualified to give an opinion has said that he should have had a diagnosis. In another hospital (our local one is shit!) he probably would.
The private paed was much better at getting relevant information out of us, which gave a clearer picture.
I don't think I masked as well as ds in school, I was very quiet and spent a lot of time alone. I was bullied throughout for various reasons, I think some people like the power of making someone miserable, and I was an easy target. I appeared to have friends, but it was more like the social dropouts hanging around together.

I haven't booked an assessment or started the application process yet, partly because the 'not knowing' makes me anxious- if I knew I was eligible and it was just a case of filling the forms in, I'd be able to do it. But if I get turned down is that because I'm not eligible or because the assessor has made a mistake? I've heard that a high rate of appeals go through so it seems they turn down a lot of cases initially just to put people off and expect you to fight for it- how can I fight for something I don't know if I should get?

I do struggle with using a phone, partly because I struggle to process verbal information and partly because I need a script- like you said I need to prepare to leave a message so will hang up and try again. I often can't remember all the things I need to say in the message eg phoning the hospital I was asked to leave my name, DOB, hospital number, contact number and the reason why I was ringing- I said something like 'Hi, my name is CrohnicallyAspie, , can you give me a ring back on .' The secretary had to phone me to log my details properly before passing it on to the nurses. I also do things like answer the wrong question eg talking to a doctor on the phone, they ask for my name and address to confirm identity but I give my name and DOB because that's what I'm used to telling health professionals!

I'm fine on the phone, as long as it goes how I expect it to go.
I do tend to plan what I'm saying, but will then make an arse of myself if someone else picks up the phone.
Eg. If I'm ringing Sarah (lady name picked at random!), even if a man picks up the phone I'll still say "hello, is that Sarah?" because that's how I've planned to answer and my brain obviously hasn't worked quick enough to know that no, a man definitely is not Sarah .
If it goes to answer phone I'll hang up and ring again having planned what to say.
I can't do phone calls if there is any noise about, as everything becomes a noisy blur.

LeChien practice saying "may I speak to Sarah please?" that way it doesn't matter who answers!

I know, I always think that when it's too late :o

I rehearse it in my head while the phone's ringing, that's probably why I find it hard to deal with answer phones, there's no point saying "may I speak to Sarah please?" to an answer phone!

Re:DS his school is supportive- he fits the stereotype of the 'eccentric professor' and they are happy enough with his scatty ness eg with homework, as he'll deliver them the grades that will make them look good.

He isn't eligible for dla and doesn't need any support or other agencies involved.

I know this has been mentioned before somewhere, but does anyone else have the problem of sensory things getting worse when they feel stressed?
My ears are permanently feeling tense and alert at the moment, when I'm on the phone I have to hold it away from my ear, putting plates away is really painful, I keep turning the sound down on the tv.
I'm not sure about ear plugs as I need to be on high alert for ds2 at the moment and I need to be able to hear, does anyone know a way I can give my ears a break?

Also, I saw this article last night, thought some of you might be interested to read it.

I do, when I'm tired my vision goes into 'HD'- that's the only way I can think of to describe it, all the edges seem sharpened, like I can see individual leaves on a tree in the distance, and colours are brighter. And with sounds, innocuous little sounds like someone coughing make my brain rattle, like the recoil from a gun shot or something. And sounds especially make my blood pressure rise!

As for what to do about it, could you listen to music? I often wear a pair of headphones round my neck so I can concentrate on the music but also hear external sounds, or I put just one earphone in. Or maybe a pair of headphones but no music, that might muffle noise just enough but still let your hear your Ds.

I just shared that link on Facebook! If people hadn't already twigged then I bet they do now.

Hey, just marking my place. Cant believe i havent posted on this thread at all yet! No news for me, still waiting for my official assessment appointment, but the clinical psych did warn me there would be a long wait...

My dog barking makes my blood pressure rise! :( As does my son's particularly loud cries that aren't really cries but more exclamations? As does the neighbour's shouting at each other. As does the TV. DH likes it loud and I'm always asking for the sound to be turned down. Other times, I have to leave the room for a bit when he starts watching his bloomin' youtube videos!!! I sometimes have to put my headphones in and have a quick time out and have a dance in a room by myself to calm down. other times, I hate all of my music and can't bear to listen to any of it at all. I used to love my dog but I don't anymore and it makes me sad.

Thanks for the article LeChien, the more I've researched autism and watched things relating to it, I've often thought to myself... I bet so-and-so from school was on the spectrum and I wonder if they know it themselves now etc. I think if I get a diagnosis, I will probably tell a future employer once I feel the job is mine. Is that wrong? SHould you tell them before they decide to hire you? But then can they change their mind when you've told them, isn't that discrimination? (Can you tell I've been out of the paid work game for a few years?!)

BeyondTheWall Hope it's not tooo long a wait! I'm waiting myself right now and am trying not to think about it, whilst doing nothing but think about it, waaah!

I love swinging, too Polter.I often have a sneaky swing in the park whilst DS runs about. It calms me so much. I wish I could just take myself off to the park by myself sometimes and swing!