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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:
ALittleFaith · 19/09/2015 07:55

Stray I'm still waiting to hear about assessment but I'm seriously considering changing jobs. Mine is highly stressful, I work with some very bitchy people so it's a bad atmosphere and I'm considering other options. I don't want to leave nursing completely but I can't carry on where I am, it's causing me major anxiety issues.

LeChien · 19/09/2015 08:32

I'd always planned on getting a job when my youngest went to school, but I'm not very qualified, and at the moment with everything at home work would be one juggle too much, so I'm planning on returning to drawing and work from home in a small way.
Stray, not that mine is officially a diagnosis, but I think it goes a huge way for me to understand myself, and I think working alone would be a better choice for me right now. Without the assessment I would probably be overwhelmed with guilt that I should be out working.

disorganisedmummy · 19/09/2015 20:19

Hi everyone.Please can I join? My ds1 is 9 and was dx with Aspergers in March after a 4 year battle.Through this process I was finding that i could relate to ds and his issues more and more.I've always felt different but could never get why.I finally bit the bullet during the summer holidays and runs the Lorna Wing Centre where ds was dx to ask if they dx adults.They said they do and sent me the form.A couple of weeks ago i received an email from them saying that they feel that it's an appropriate referral for me to be seen.Of course this doesn't necessarily mean I have Aspergers but I think they must think there's something there to be prepared to see me.in the RDOS test I scored 39 if I can remember rightly.Not really sure what that means though.

Anyway,I'm really,really struggling at the moment.I am on anti-depressants and have been for a couple of years for depression and anxiety but I don't feel they're working.Ds1 is hard enough to cope with-he copes very well at school but explodes at home but it's the impact it's had on 7 year old ds2.This is what I can't cope with.His behaviour is horrendous but it is out of jealousy because of everything going on with ds1.I just want to run away.

Thanks for letting me rant

disorganisedmummy · 19/09/2015 20:35

Sorry RDOS score was wrong. It is:aspire score 134/200 and nt score 92/200

Gumblebee · 20/09/2015 09:38

Welcome disorganisedmummy!

That sounds very stressful.

disorganisedmummy · 20/09/2015 09:41

Gumblebee I'm beside myself to be honest and I don't know where or who to turn to.I do feel that I'm on the edge of a nervous breakdown.I can't just can't cope with anything.

Gumblebee · 20/09/2015 09:58

Have you any support for you? If you're feeling so close to the edge it would be good to get someone you can talk to about what's going on. Maybe the GP?

disorganisedmummy · 20/09/2015 10:26

I'm just so tired of explaining myself to others all the time and having to justify my feelings.I spent 4 years doing this for ds1 who was then dx with Aspergers and now I feel like it's happening to me.Very few people believe that I could have Aspergers or traits because I cope so well and seem to socialise and hold relationships so well.I'm so exhausted with it all.Trying to deal with my issues,help ds1 with his and help him with homework and violin practice and all the other stuff and then to have to deal with ds2 on top and has just pushed my over the edge.It's npot ds2's fault.I feel so sorry for him,all he wants is my attention.I try so hard but i find him so draining and demanding yet I can totally get ds1.
I just don't know what to do for the best.

disorganisedmummy · 20/09/2015 10:26

I mean I'm tired of explaining myself to others in rl.Strangely I can talk to you all till the cows come home.

LeChien · 20/09/2015 10:32

Disorganised, could you try seeing the gp? Print out the tests that you've done and write a list so you don't have to go over it all again.

I've been through the system with ds2 and it was as you describe, constantly trying to explain and justify, and a load of professionals who want to pin it onto parenting.

I'm being referred for ASD assessment, and so far the process is a breath of fresh air compared to ds's, as I'm an adult (or pretend to be), my gp has believed what I've told her.
With children, experts are relying on parents explaining, and for some reason they don't trust what they're being told.

It may be easier than you think.
Thanks

disorganisedmummy · 20/09/2015 10:36

leChien I am waiting for an appointment from the Lorna Wing centre who dx ds1.I filled in a referral form and they feel it is "an appropriate referral".They are just waiting to get a date from the clinical team.What is stressing me out is trying to explain to the gp why I feel so awful

LeChien · 20/09/2015 11:46

Sorry, yes, you said that.
I don't know what advice to give re. GP. I'm struggling as well, and because I'm not a cryer they don't believe I feel as bad as I'm telling them I do!
Writing things down tends to help as otherwise I focus on the wrong thing. Might that help?

ALittleFaith · 20/09/2015 12:27

Hello disorganised. I do sympathise. DD is only 2 at the moment but I wonder how I'll cope in the future. I've just had a breakdown. Had to take time off work, couldn't do anything at home. I find it easier to talk on here than in RL. I hope you get your assessment soon.

ACatCalledDave · 21/09/2015 15:29

Hi ladies, I'm sorry I haven't read the thread but do you mind if I join you all?

I don't really know what to say, I'm married with 1DS, who's not long turned 2.

Back story (I'm sorry, this will probably be very waffly, I'm in bits and tend to waffle when upset):

We have been having issues with DS's behaviour (namely, aggression) for about 6 months. It started to flit across my mind that maybe DS is HFA (his speech and movement is fine, aside from jumping/ride on toys).

Then - absolutely bizarrely - a couple of months ago on my 30th birthday i realised that I have aspergers. A couple of days before a friend had been asking whether her husband could be aspergers. It struck me that I have a few traits. My family then all forgot my birthday, including my mum, and it really upset me. (Who forgets their daughter's 30th birthday?) I don't know what prompted me to really, but I started googling female aspergers, & realised that mum and i are on the spectrum. Over the weeks in between I've realised that my husband, my son and all the other members of my family are too (apart from one granny, and my half brother). I hadn't realised, despite previously worked with autistic young people & even thinking how like me one of the aspergers girls was.

My birthday happened to coincide with the documentary about autistic girls on the BBC. I couldn't believe it when I saw it. It felt like all the pieces of my life were coming together. The whole thing was such a coincidence - the friend asking about her husband, my family forgetting my birthday, and the programme being on the BBC - that it really knocked me sideways. If those things hadn't happened I'd still be none the wiser. (i can't explain why the coincidences make it more of a shock, but they do.)

DS and I have been referred for assessment via GP & HV.

The thing is I feel such a huge sense of sadness, loss and grief. I wish i had known at DS's age. Life has been such a struggle. I'm very lucky to have my DH and DS but aside from that I have failed in education despite being very bright, struggled to maintain even a low paid job, have spent several years out of work due to poor mental health, & was diagnosed with borderline personality disorder in the early 20s (i now believe incorrectly). I feel so sad and angry. How much of this could have been avoided had we only known?

I'm glad to know for DS, but for me it feels like it's too late; it's good to know but how can the knowledge make any difference now?

We moved to a new town 6 months ago, and it was because we moved that I realised - my mental health has been awful since we first realised we were moving (& DH started a new job), and I was expecting it to resolve after we moved, only it didn't, it just got worse. I left all my support behind - my counsellor, friends, everything. We don't have any family here.

Just finding life so bloody painful. I wish it didn't hurt so much. Tell me it will get better as I adjust to the move, find support here, and accept this information! Our house is a state, DS is neglected & I'm spending most of my days sitting under a blanket on my phone while DS watches TV, and I'm eating crap & getting fat. This isn't what I want for him!!

We had DS via IVF and had planned to try for a second this autumn, i don't know whether I can and whether this would in fact be a terrible idea. It will cost us a lot to delay it (hundreds of pounds) as would need to extend storage on frozen embryo. I just don't know whether I'm coming or going at the mo.

IamBubbles1986 · 22/09/2015 22:32

Hi there. I'm new to this thread. I was pointed in this direction by polter (thank you). I'd posted about strange sensations I have and after polter mentioned it might be a form of SPD I did some digging and I strongly believe she is right. I have also for some time felt that I may be on the spectrum and after taking the recommended online tests and reading the traits of women with aspergers I finally feel like I understand why I am the way I am.

I've arranged for a telephone consultation on Thursday with my doctor to ask for a refferal to be tested. I'm hoping it will open up further support but also selfishly it will be nice to finally have an official reason for why I'm so different to everyone else.

I'm so tired of trying to fit in and trying to be normal. It never works anyway, I always get called wierd. I think people like it. They tell me I'm funny and interesting, even when I'm not trying to be, so I guess it could be worse.

I'm worried that the doctor might think I'm unable to care for my sons. I'm sorry if that offends. I can see many people do just fine and I feel like I do just fine, were happy and they are clean and fed and most of all very much loved, but I'm worried about whether there is the same stigma about autism with doctors as there is with others, that people on the spectrum are somehow lesser beings. What I mean by that is that I've often heard horrible things said about people with autism like they all have low IQ and can't function in society, which I know to be obviously false, it's a spectrum so obviously people can be hugely different but it seems so many people out there are completly ignorant in their views. Does any of this make sense?

Basically I just need someone to tell me that Im doing the right thing for myself and my family by looking for a diagnosis and that social services arnt going to come and take my children away by suddenly deciding I'm not functional when I amam

Sorry I know reading this back it seems ludicrous to have this fear but I feel like I can be honest about this here.

Thank you for taking the time to read this. Also if anyone can give me some advice on what to say to the doctor id be very appreciative.

PolterGoose · 23/09/2015 08:59

This reply has been deleted

Message withdrawn at poster's request.

LeChien · 23/09/2015 11:02

Hello Dave and Bubbles :)

Dave, I can really identify with loads of your post. Please don't worry about it being too late for you - it's never too late!
I had confirmation that I have asperger's (although not official) and it's helped me to understand myself and not be so hard on myself for the things I struggle with.
Diagnosis can be very positive.

HugAndRoll · 23/09/2015 13:13

I have a psych appointment on 3rd October. What should I do to prepare? Do you think it would be useful for me to have written a list of my difficulties?

IamBubbles1986 · 23/09/2015 13:23

Hi polter, thank you. I am already OCD diagnosed and I know its just my intrusive thoughts making mW think this way, I don't think I'm the best parent in the world but my boys are definatly loves and cared forfor, sometimes I just need to have it reiterated by others. I'm writing a list of what to say to the doctor and am looking forward to starting my journey

PolterGoose · 23/09/2015 14:09

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Message withdrawn at poster's request.

IamBubbles1986 · 23/09/2015 15:40

Just a quick question sorry, one thing I'm slightly concerned about it that I have no trouble with eye contact which I know is a big indicator. In fact I'm the opposite, when I'm talking to someone I stare straight in their eyes, I barely even blink, I know I'm doing it but I can't stop. I can see them looking away periodically and I notice others so but df tell mW I don't even subconsciously
Does anyone else do this?

PolterGoose · 23/09/2015 16:05

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Message withdrawn at poster's request.

LeChien · 23/09/2015 16:53

I am, yes I sometimes do this. Some people I find it very difficult to keep giving eye contact, others I am fine, others I overdo it.
When ds was a baby he used to do what we called mad-eyes - he would stare almost aggressively at people he wasn't familiar with, it was quite unnerving!

IamBubbles1986 · 23/09/2015 18:10

Ah so its mainly eye contact that isn't the usual type. That OK, I was concerned that I have many other indicators but they would say that because I am maintain eye contact rather than avoiding it that I wouldn't be considered for assessment thank you

PolterGoose · 23/09/2015 18:15

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