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!

Not necessarily.You could take your psychiatrist some information about how women are more able to mask ASC traits (although this often leads to frequent meltdowns). I think most of us on this thread can do a lot of things that make us appear NT, but not without a lot of effort and regular breaks.

I think those questionnaires are too black and white. There should be a 'yes, but...' box for every question.

Yes, the questionnaires are too black and white; they rely on the person reading the question to interpret in a very set way.

For example, questions about friendship. My husband says 'no problem'. But, when I point out that actually I don't have any, he says well I could if I wanted to!

I think the psych is a bit more clued up on the masking thing in women than is usual, but the lack of supportive feedback from someone who is supposed to know me best is going to be a problem in getting a full diagnosis.

I'm inclined to return the questionnaire to the psych with a covering letter saying that there are several points that I disagree with, and why. What do you think?

And I am also feeling very 'let-down'. I'd made all sorts of assumptions about DH based around the belief he understood me and the issues/impacts of probable asd/hfa are having on me. I really am on my own.

I know it's not the same, but you have us!

Does your DH know much about autism? Do you think if he read up on it a bit it would make a difference? Maybe start with the Tania Marshall list of female traits.

Spring does he mean you could make friends if you wanted to because you are such a smashing person or you could if you only put some effort in?

I don't have a partner and my family don't want to hear anything. But I'm finding it really helpful to read other autistic women's autobiographies, to give me a sense of not being alone with all this stuff. Currently reading 'Pretending to be Normal' by Liane Holliday Willey.

Hello all. Hope everyone is well.

Spring I've just done my questionnaire too. I didn't give the parent one to DH - not sure if I was meant to?! panicking I've done it wrong I got it two months ago and filled it in one month ago. Only just found the courage to send it. Going through the I'm barking up the wrong tree and they'll think I'm daft swinging to Jeepers what if I am?! DH is not convinced I am on the spectrum...
Recently I've wondering if it's borderline personality disorder rather than ASD. Guess all I can do is wait!

I think he means that I have the capability to make friends but choose not to. He is seeing it as a positive rather than a negative, mainly because he thinks I am Wonderful (!).

I am not sure if it is denial, a lack of insight into the real impacts on me, or that he thinks, underneath, that this is just some sort of anxiety/neurosis. I will have to bide my time on this I think. He may just need the objective diagnosis, assuming I get one.

(the psych asked me to give the form to my DH, due to lack of parents, he is the person closest to me)

I am going to return the questionnaire, highlighting my disagreement with several key answers, and say why.

Hello all.

Joining this thread after PolterGoose alerted me to it after I started my own thread this morning. Hope I dont bore on (I tend to!), but could do with a supportive ear and some advice.

I have a DS with Asperger's, but until very recently I had never even remotely thought that I might be on the spectrum myself. However, I've been increasingly aware of the growing movement of girls/women with ASC, and very recently, I have started to question whether it applies to me. Its just been a nagging thought, really. Partly fuelled by the similarities I am beginning to see between me and my DS as he gets older, and partly fuelled by my frustration with the psychotherapy I have been having, which although useful in some ways, always leaves me feeling like somehow there is some major 'point' being missed (dont know if that makes sense?).

I looked through the Tania Marshall and Everday Asperger's checklists this morning, and have been crying (sort of with relief!) ever since. Its like reading a checklist of who I am. Scarily so.

I'm just wondering what to do now, though?

I realise I have had these issues (Asperger's?; possibly the attention deficit bit of ADHD; possibly dyspraxia - clumsy, trip over and break things frequently, very poor fine motor skills etc) since I was a child. What makes me sad is that this morning I suddenly - in a huge rush of memories and feelings - realised that all my attempts to mask my difficulties from a very early age are what is causing my anxiety and depression .

I have had crippling anxiety and several major depressive episodes since I was a teen (now late 30s). But my Oscar-award-deserving ability to mask my difficulties has kind of got me through most of my life. It all sort of fell apart three years ago, though, when I became severely depressed and was diagnosed with bipolar type 2. I had CBT, psychotherapy and tried various combinations of meds for the next two years but really felt not much better. Then a year ago, I had a bit of a breakdown. The masking and trying to be 'normal' just became too much, I think. I had a big, intensive review with a psychiatrist and psychologist over eight weeks and bipolar and personality disorders were ruled out. I was taken off meds (glad) and discharged. Their 'diagnosis' was 'straightforward' depression and I was referred for private psychotherapy.

I am feeling better in many ways - crippling depression has lifted and am functioning day to day OK. But the anxiety is terrible. I struggle so badly with self organisation, social anxiety, the bloody endless ticking of my brain!

I self referred back to the psychiatrist recently (have a review next month) and I am wondering how to go about broaching the conversation re: ASC? Another poster suggested printing out some of the checklists and talking about how they apply to me. Is that what I should be doing? Is a psychiatrist the right person to be broaching this with at all?

And what next? How does a diagnosis help in later life? And is there anything I can do now to start feeling better about myself?

I hope this all makes sense. Feeling a bit fragile.

Just did that RDOS test:

I got:

Your neurodiverse (Aspie) score: 139 of 200
Your neurotypical (non-autistic) score: 75 of 200
You are very likely neurodiverse (Aspie)

Do psychs take these tests seriously, though?

Hello, SoundingBored (cool name),

You got a very similar score to me in the RDOS test. I have been assessed as having Asperger's but I can't afford a private diagnosis (also I'm not working or claiming benefits so don't really need it). I did take some information with me to the GP and the psychiatric nurse but I never even got it out of my bag before they both dismissed it. I found the NHS completely useless but I think it varies from area to area so you might have better luck. I probably would have kept going if I hadn't been battling for years against their shitty dismissive attitude. I went to a charity in the end and I go there for regular counselling.

Whether or not you 'need' a diagnosis depends on you. Like I said previously, you need one to get extra support at work or college, or if you want to claim benefits (although I'm not sure how all that works). If you just need someone who knows what they are talking about to tell you informally that no, you are not crazy or lazy or flaky or socially inept, you have ASC, then maybe an assessment will be enough for you. Some people are just happy with a self-diagnosis and then get support online or from books. Self-diagnosis is seem as perfectly valid by the ASC community.

That Tania Marshall list was like reading my life story for me. It's hard to know how to feel when it finally clicks. Stick around on this thread, we have all been through it one way or another :)

You sound very similar to me sounding. I'm diagnosed dyslexic, suspect I'm dyspraxic. Someone commented that they didn't realise I was depressed at work, but that's because I walk in to work and act like a capable person! I wear a uniform which helps.

faith I asked my psych about personality disorders when I went for my assessment. He said that people with personality disorders basically don't function as well in real life as I do. I have been with my partner for over a decade, and in the same job for nearly as long. He said that people with personality disorders are far more likely to move from partner to partner and job to job. Hope that helps a bit?

sounding yes, a psychiatrist is the right person to see. I had to see the GP for a referral first, I basically just said 'I think I have Asperger's syndrome and this is why'. I had prepared one or two points for each of the diagnostic criteria (the triad of impairments). I also told him of my score on one of the online tests. That was enough for the referral, so should be enough for the psychiatrist to decide whether to go ahead with the assessment. For the assessment, I wrote bullet points of everything I could think of, but in the end I didn't need it as the psychiatrist just kept me talking and asking questions.

Chronically yes that makes sense. I've been with DH for 8 years and stayed in the same area of work for over 10 so maybe it's not that. I just need to wait and see. Thank you.

Thanks and Hello all

I'm going to try and write down what I want to say to the psych. I am feeling really quite odd about this. On one hand, relief that I am maybe not 'mad', lazy or a fuck up. On the other hand, feeling trepidation about raising this with the psych.

Chrohnically and faith - on the subject of BDP: this was also discounted for me on the basis of my stable relationship with DH (together 15 years) and long and close friendships. The psych I saw then said people with personality disorders very often dont have a stable relationship history. I dont know if thats true (I have a slight distrust of psychiatrists, I'm afraid!), but it made sense to me at the time.

Its weird, as when I used to trawl through checklists and 'symptoms' lists for personality disorders and for bipolar disorder, some of the criteria fitted me and I would sort of try to persuade myself that maybe they WERE the right diagnoses. I think it was a desperate attempt to try to get some sort of explanations for why I am the way I am. But when they were both discounted, I felt relieved. I think in my heart I knew neither were right. Asperger's and possibly ADHD seem much, much more spookily accurate. But there is a bit of me that thinks the psych might think I'm just clutching at straws....

I'm autistic and work nationally and internationally with the diagnostic professionals. We had a very large number of them in my training session for them yesterday, talking about autistic women and diagnosis. One of the things they said was how hard it was to diagnose...because women are far less obvious. So they were hoping for top tips.
We went through loads of detail on what good questions to ask. As we know, most of the standard questionnaires are designed to identify boys and men, not girls and women. Generalising wildly, we're better at internalising our 'stims' and rituals...keeping repetitive movements really small so others don't see them....thinking ritualised thoughts or playing the same track of music over and over on iPods etc. We also may have passionate interests around observing other people, and collecting girly things - not trains and cars ( I collected toy cars...but most don't). We may learn to make eye contact even if we have no clue why and it feels painful. We may learn to mimic body language better than many men. So the specialists go to tick their boxes and can't find the evidence...unless they are experts in diagnosing women.
Notice more and more about yourself - anything that is a ritual for you or strange ways you calm down. Ask yourself how many friendships and relationships with non-autistic people have gone really unexpectedly ...where all of a sudden you are faced with intense anger...and you have no idea what you did. None at all. Ask yourself how often you have reported people breaking rules, and no-one else has cared.
Often partners are blissfully unaware that we're different, because they are too.

I've fallen out with my in laws. For those that don't know, I have recently been diagnosed with Asperger's syndrome. I have a tendency to mask in public and then let all the stress out at home. So when the diagnosis looked imminent, I wrote a letter to my in laws explaining, and since then I haven't tried so hard to act 'normal' in front of them.

Anyway, SIL hasn't read the letter. In her defence, she has been ill, but I wrote the letter 2 months ago, and while she has had very bad weeks (basically bed bound) she has also had weeks where she has been well enough to go on holiday, shopping, cinema etc. but apparently not well enough to read a letter.

SIL sent DH a message saying she was fed up with me texting MIL all the time, and a couple of other complaints. All the complaints are directly related to my AS (eg I text rather than phone because I find it difficult to talk on the phone and process what I hear). All of this was explained in the letter that SIL hasnt read.

So now I feel utterly rejected by them all, and feel if they can't be bothered to read a letter and make some allowances for me, I can't be bothered to make the effort and see them.

Was the letter addressed to your SIL? Are you sure she is aware of it?

If not, send it again, direct.

If you know she has read it, then ask your DH to refer her back to it every time she complains.

It was hand delivered, addressed to all of them. She is definitely aware of it- MIL spoke to her but SIL was not well at the time so SIL said she would read it later. Since then DH has reminded her twice (both times on 'good' weeks).

Can you mentally 'shelve it' as something for your husband to deal with?

I am leaving it to him to deal with. The problem is I can't see them until it's sorted because I will just be too anxious and any little thing could trigger a meltdown (and meltdowns/shutdowns are something SIL complained about!)

That sounds frustrating Chronically.

I have a doctor's appointment on Monday morning. Eep. I am only asking for referral at the moment and I'm also going to ask about my tiredness so I suspect they will want to address that first, but it's a bit scary. I'm not sure if I should go in with a list of symptoms or what.

Frustrating indeed! She has complained about my meltdowns and about the techniques I use to prevent meltdowns. So what does she expect me to do?

Good luck on Monday. When I went to the doctors I followed the NAS advice, which is to look up the diagnostic criteria and choose one or two examples of how you meet each one. I wrotw it down in bullet points in case I needed to refer to it in the appointment. I also told the Dr that I had done the AQ questionnaire and what my score was.

Unfortunately some people are just irritated by having to make allowances and about other people being "different". It shows that she's either not very clever or not very kind, or both I suppose. I'm sure they'd make allowances if you were blind or couldn't walk or something. Some people just have trouble understanding that invisible disabilities also require adjustments, it's like they think you can turn it on and off

I guess she wants things to go back to how they were, with me masking. Maybe she does think I'm turning it off and on, because they rarely saw me overtly stressed.

Unfortunately I was getting so stressed I was having meltdowns at home most days, and with my worst meltdowns I was hurting myself. So I'm not putting me and DH through that again.