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

986 replies

EauRouge · 10/06/2015 16:45

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?

OP posts:
nickelbabe · 05/08/2015 19:45

Your neurodiverse (Aspie) score: 150 of 200
Your neurotypical (non-autistic) score: 44 of 200
You are very likely neurodiverse (Aspie)

[ahem]

Gumblebee · 05/08/2015 19:56

"Do you have an urge to point out badly written or incorrect questions in screening tests?" Wink

Yes, of course low things are for jumping over Grin

mjmooseface · 05/08/2015 20:03

Is hair brushing an actual thing people do nickelbabe?! Blush

I also get the urge to jump in puddles when out walking in the rain in my wellies. Even if I'm on my bloody own! Oh, the ways I amuse myself! ;)

LeChien · 05/08/2015 20:03

I never brush my hair Blush

Gumblebee · 05/08/2015 20:09

Hey we have almost the same score nick; I'm slightly more NT/less ND. Smile

Your neurodiverse (Aspie) score: 148 of 200
Your neurotypical (non-autistic) score: 49 of 200
You are very likely neurodiverse (Aspie)

Gumblebee · 05/08/2015 22:33

I still can't say I dare be convinced my diagnosis is right - it seems to fit almost perfectly, but I worry it's wishful thinking because I want an explanation. I worry that the assessment wasn't in-depth enough, wasn't long enough, didn't get enough developmental evidence, that because the person conducting the assessment isn't a doctor or a psychologist it somehow doesn't count, that I'm part of a wave of over-diagnosis, that diagnosticians tend to see whatever condition they specialise in in patients, etc. A doctor I saw recently about something else referred to it as a "trendy" diagnosis and said they preferred not to label people and I feel a bit like I'm following a fashion.

Has anyone else had these feelings even after diagnosis?

nickelbabe · 05/08/2015 22:36

regarding NHS versus private assessment...
(still reading through the thread)

the NAS says that a private assessment/diagnosis is not counted when it comes to accessing resources. Like it's not recognised unless it's an NHS diagnosis.
so although it might be useful to go fro a private assessment so that you've got one, if it's not recognised by the NHS then it's like not having one at all (IMO) - like doing all the work for a GCSE exam, but not going into the exam, so you've not actually got a GCSE even though you're at that level.

But I do have to laugh at all your "3-4 months" "such a long time up to 6 months" - in Kent, it's 2 years from first referral to final assessment/diagnosis.
I'm happy to wait because I need this formal assessment - not just for me, but because i really do think it will positively impact my life.

And in the back of my head I'm gleefully looking forward to going "yeah, you fuckers who bullied me all the way through school/life/work - I've fucking got autism, you bastards!"

nickelbabe · 05/08/2015 22:39

Grin at hair brushing.
Yes, i normally brush my hair.
I only started not doing it recently when i realised that actually, when i scoop it up into a bun, no one comments and no one stares.
but it was super greasy too.
i hate washing my hair and have to psych myself up for it.
twice a week every frigging week.

Gumblebee · 05/08/2015 22:44

I was very lucky in a way - they used to send a small number of people here out of county to some of the prestigious diagnostic centres, but of course that was very hard to get. Now they have an in-county service (albeit very small). I was seen after waiting a year or so, because I was able to take a short-notice cancellation (a few days)

Lightbulbon · 05/08/2015 23:17

Hi, I've been here before-name changed.

Re: hair, I only brush/wash it as required. Firstly I hate the sensation of getting wet. Secondly I hate the noise/loud sound of drying it. Also I don't feel the social pressure for it to look 'done'. Day to day I just tie it back.

LeChien · 06/08/2015 00:09

Nickel, that must be for adult diagnoses is it?
Ds has a private dx, but there is a legal right for it to be accepted because he was assessed by a paed and psych who followed NICE guidelines. I assumed it would be the same for adults.

Allofaflumble · 06/08/2015 08:26

Hi Gumble yes I too went through the doubts exactly as you describe. At first I felt relief for a while, then the doubts crept in.

It led me to get a second diagnosis. Again relief and again, the doubting started.

The way I look at it now is that it is my Aspie within. It must analyse everything. Also due to lowlow self esteem, I am the one person amongst millions who is not allowed to have a reason for feeling the way I do.

Therefore I am uniquely bad! This is a part of my obsessive thinking. Hope this makes sense?

BeyondTheWall · 06/08/2015 08:55

Get together was smaller than planned but was fine. Luckily i'm on the quiet 'ott anxious about saying the wrong thing' end of the asd behaviour thing, but i have an aspie friend (weirdly, she was a school friend who i've met up with again recently as our kids are friends, who has had an asd diagnosis as an adult!) who's on the 'doesnt shut up' end, so there were no awkward silences Grin

I'm better at hairwashing now, i'll still leave it as long as possible but nothing like i used to as a teenager. I literally washed it once a week and tied it back all week (and this was not in the days when everyone bathed once a week, i'm not that old). I have short hair in a 'messy' cut, so it often looks better when i've slept on it and havent brushed it!

Oh yeah, the other thing. I'm also very looking forward to the idea of it getting back to a former boss who had me up on a disciplinary while i was pregnant that actually, pretty much every thing on the paperwork was an asd thing. Shame you cant sue for disabilism that happened before diagnosis, eh. Mwahaha!

CrabbyTheCrabster · 06/08/2015 10:09

Sorry, it's taken me ages to come back to the thread, so have only just seen your question mj. Thank you for the welcome. Smile

I asked for a referral for adult assessment last year, having read a lot about how differently AS presents in girls after my DD was diagnosed with AS. So I guess my assessment story starts with her, really. I did years of to-ing and fro-ing in my head about whether to get my DD assessed, as in some ways she fitted the picture but in others she didn't. I took her out of school when she was 8, because she wasn't happy there, and decided to try home edding her. I think that made the diagnostic procedure easier because I've read so many accounts of having to fight for a diagnosis in the face of schools saying 'oh we don't see any problem' or 'she's fine at school'. I started reading more about autism/AS, and it was reading Tony Attwood's Complete Guide to AS, and how it presents differently in girls, that finally prompted me to ask for a referral. I wrote a list of concerns (including the aspects that I felt weren't typical of autism), and took them to the GP. It was whilst writing that list that the penny dropped a bit for me as well, as I thought 'oh I do/did that too!'.

I was lucky, I think, in happening to see a trainee GP (he'd just started and was giving all his patients feedback forms to fill out after the consultation) who didn't know quite what to do so just did as he was told. Grin When I asked for the referral he said that her school should deal with that, and was totally flummoxed when I said she was home ed. he wasn't British, hadn't heard of HE and couldn't believe you were allowed to do such a thing! Grin He hummed and hahed and in the end I said firmly 'I want a paediatric referral to X hospital' and he made the referral and included the list of concerns I'd printed off. After a couple of months we saw a fantastic developmental paed, who said that in her opinion DD has AS. I was afraid I was going to get laughed out of the place, especially as when the paed came out to get us, DD marched up to her, made perfect eye contact and shook her hand. Grin She didn't do any of the AQ tests or anything, just had a long talk with her and me and used her clinical expertise (she told me afterwards that the Attwood book is 'their bible' when it comes to diagnosing in girls. She was really skilled and knew just the right questions to ask DD to get to the relevant stuff. Her diagnosis was confirmed by the SALT and the clinical psychologist over the next six months or so, and her official tripartite diagnosis is AS.

As I did more reading about it in the wake of that, the more it dawned on me that I had many of the same traits and might also be on the spectrum. I mentioned it to one GP who was quite disparaging and said that even if I was, a 'label' wouldn't make any difference. I left it for quite a while after that, but in a bad spell last year (having come off antidepressants), I felt I needed to know one way or the other. I asked my lovely female GP, explaining why I wanted to know, and she referred me to the adult assessment service. After a couple of months I got a letter to phone the service, which I did, and was put on te waiting list. They warned me it would be at least a year, but said I could go on the cancellation list if I liked. That was in the October, and a cancellation came up in the January! Shock I was seen by the clinical psychologist autism specialist, who then wrote his report and discussed it with his boss, a clinical psychiatrist, who looked at whether it met the criteria for diagnosis. I was sent some forms by email to complete before the appointment; some tick box forms like the AQ test, a sensory profiling one, and a longer one that asked open-ended questions. For that one I wrote 8000 words Shock Blush and when I was panicking to DP that I'd have to edit it, he said 'no I think he can gauge a lot for the fact that you wrote all that'. Grin

The appointment was scheduled for two hours, but I was there for almost four and a half hours. I only realised when I came out and it was dark! I was so nervous as the start I could barely speak, but he was absolutely lovely and really put me at my ease. He told me that they use the DSM-V criteria in this county (Surrey), which has incorporated AS into the general diagnosis of ASD. So my letter/report says ASD, but when he phoned me to tell me the result, he said that 'in old money', it would have been an Aspergers diagnosis.

In the appointment we talked about a huge range of things, but within the framework of the report, and he wrote down everything I said. They would have liked me to take my mum along, but she lives a long way away so I had written down her answers to the questions about what I was like as a child, andgave him her number to phone her if he wanted (he didn't do so). He told me towards the end of the assessment that in terms of meeting their tick-box criteria, I was right on the borderline of being on the spectrum or not, but that in his clinical experience, particularly of how women/girls present differently, he would put me on the spectrum - he drew me a picture to illustrate all this. Grin He said he's seen more women presenting for assessment in the last few years, and said that I reminded him of four other women he'd seen recently... 'very different in terms of your personalities, but presenting with the same expressions of the condition'. He told me at the end that in his opinion, I had AS, but that his boss was very particular about all the criteria being met. I was expecting not to get the diagnosis, so was absolutely gobsmacked when he rung me a week or two later to say yes.

It took me ages to accept it - I thought he must be wrong (despite years of clinical experience! Grin), or that I'd misled him, or selectively remembered things (I rang my mum and read her all the stuff I'd written sbout my childhood, to make sure I hadn't given a false picture - she said it was all accurate). I still don't believe it sometimes, or think I'm an imposter. I've had a lifetime of feeling a failure for not being able to cope with things that other people just seem to get on with, to deal with. The reason I wanted the assessment was to 'settle, once and for all', whether I'm just fucking useless, or whether there's a reason for how I am. Of course it hasn't settled it once and fo all, and I still beat myself up a lot, but slowly, I think I'm learning to accept it, accept me, and forgive myself.

Wow that was really long, sorry! You can see how I wrote that 8000 word form, can't you. Grin Hope that answered your question.

Gumblebee · 06/08/2015 10:54

Thank you flumble. I know exactly what you mean by "I am the one person amongst millions who is not allowed to have a reason for feeling the way I do."

Crabby: snap! I think we saw the same person (who, yes, is absolutely lovely). He didn't tell me what he thought at the end, though; I had to wait for the report. I went on that cancellations list too. Who are these people who cancel after waiting so long?!

CrabbyTheCrabster · 06/08/2015 12:49

Gumble it was Howard Childs. Lovely man! Maybe you were one of the women he collectively referred to. Grin

Gumblebee · 06/08/2015 12:57

I only saw him last June, so I wouldn't be one of those women, but I'm sure I probably fit the same profile. We could form a local club Grin

nickelbabe · 06/08/2015 17:59

Both NAS and KAT (Kent) told me that AS isn't given anyore - it might be that NAS were referring specifcally to Kant, though, as they already knew where I was from.

I can't stand tangle toys. they're annoying and pointless.
However, I do love untangling knots and things like that for people - possibly because it's a useful thing to do as well as strangely calming.

nickelbabe · 06/08/2015 18:02

The choice thing is funny- I'm so glad I'm vegetarian because in a restaurant, there's usually only one or two options.
Of course, usually I don't want either and moan veggies never get a choice, but it's also good that it's always something familiar.
I hate it when they have 5 or 6 options because i can't decide and then panic i've chosen the wrong thing

LeChien · 06/08/2015 18:05

Going on holiday tomorrow, nothing's packed and I've just spent the last hour sorting out a cupboard Hmm
Why? It just happens, every time, and I don't understand why.

nickelbabe · 06/08/2015 18:06

hmm, school...
i was getting carried away with trying to remember what the other 1st year teacher was called in juniors.
Mine was Miss Jones, and I can remember every other teacher in the school, except the other 1st year. It's not Mrs Wright, because that was the other one in infant school.

My mum had to go in and see my 1st year infant teacher about reading because i would refuse to recite the phonic alphabet with everyone else "well, she already knows how to read so why should she!"
I still cant work out the sounds now!

nickelbabe · 06/08/2015 18:09

right, now i've read up to where i joined the thread, i'll read today's posts and then say hello Grin

nickelbabe · 06/08/2015 18:23

LeChien - i don't know if it was for adults' for all diagnoses.
The woman just said that you weren't allowed to access certain resources without a diagnosis

Crabby
" I've had a lifetime of feeling a failure for not being able to cope with things that other people just seem to get on with, to deal with."
That - exactly that in a nutshell with grated cheese on it.

nickelbabe · 06/08/2015 18:24

We were ready for playschool this morning with 15 minutes to spare.
I was gobsmacked.

LeChien · 09/08/2015 16:27

Has everyone buggered off?
Having a very un-relaxing break at center parcs.
Quite a bit of irritating, needless family stress that has really pissed me off, and ds2 is finding it very difficult, and has sworn more in public than ever before.
Home tomorrow, can't wait to lie awake sleep in my own bed.