Reading this board is like looking in a mirror, and I don't know what to do.

[BoardLikeAMirror]

Hello

I've been lurking on this board since it began, and I see more and more posts that seem to be describing me, and I'm not sure whether to be glad as it might provide an 'answer' or unhappy because I don't think there's any way I will be able to get support.

The latest one was this morning - the thread about posture - I realised I do exactly that, I am sitting 'wedged in' with my clicky joints and only three days ago, my DH commented that the way I sit in the car (as a passenger - I am too uncoordinated to drive myself) is 'weird' - basically I brace myself into an upright position by pressing my hands down on either side of the seat.

That's just one example, I could go on and on. I am very socially awkward, poor at recognising people, I talk to myself, make noises and skin-pick when I am on my own.

I often struggle to get dressed in the morning because I don't like the sensation of changing the clothes against my skin. WFH has made this worse as I used to have to force myself to do this but now I'll put it off unless I have a camera meeting and I'm going for days sometimes without getting dressed.

There were also lots of things when I was a child, but I was born in the 70s when there was far less awareness of ND so I am not surprised that nothing was picked up.

I think I would feel better if I could be diagnosed because it would absolve me of the guilt I often feel for the way I am and the shame I feel at the millions of embarrassments in my past, but there's no hope of it because it takes me days to work up the courage to phone the GP for so much as a repeat prescription. I can't face the conversation because I'll feel as though I'm being disbelieved - my tone of voice always sounds 'false' when I talk about my health.

I'm not even sure why I am posting but I feel better for expressing this, so thank you to anyone who takes the time to read it.

Ok so an assessment is the first step. Can you do an e-consult? That's what I did to first approach my GP. Then he rang me, but because I'd written down a brief explanation of what I wanted and why, it was easier for me to follow up. Make a list of things you need to say and ask your GP to wait whilst you explain.

I sought assessments (for autism and adhd) after recognising so many traits in my children and after attending courses to learn about these conditions in order to help them. I had no idea that I had either condition prior to becoming a mother. I just assumed everyone struggled with the things I do. Newsflash, they don't.

Also try some reading. Are you thinking autism? If so, Drama Queen by Sara Gibbs and Odd Girl Out by Laura James were like holding up a mirror to myself!

Hope you're ok. It's a lot to take in but there's lots of information out there and lots of online communities now where you can speak to people like you, and not feel like an outsider anymore.

Thank you for replying. I recognise things in myself that seem to be from both ADHD and autism - I will try the books you mentioned as I do feel a weight lifts from my shoulders whenever I have an 'it's not just me' moment.

I'm fairly sure the GP is only doing phone consultations at the moment. Making a list is a good idea, I just worry I won't be taken seriously and it will become yet another conversation that sticks in my head for the rest of my life and comes back at random moments to torment me.

The posture post was mine and I sit exactly the same way as you in a car 😁

Have you tried one of the online questionnaires? They are good to take to the doctors with you. Here's a decent one psychology-tools.com/test/autism-spectrum-quotient

Stick around on this board, honestly there is so much support. You certainly sound like one of us to me.

Ha, yes that's sounds familiar!

Are you on Instagram? Whilst I'd be wary of self diagnosing based on anything online there are loads of good, useful pages to follow that it's nice to read and relate to.

Be brave. You can do it.

Thank you both for your replies. I've been wary of trusting online diagnosis tools but I'll have a go if the one you've linked is a well-regarded one. It would certainly help me feel more confident to have some 'evidence' to present to a GP.

I'm not on Instagram - I try to limit what I join online as I can end up spending too much time online to the exclusion of other things!

I am the same @BoardLikeAMirror. I thought the things I did to cope were normal and have always felt ‘not okay’.

It’s incredible to know there are other people like me out there!

I got 37 on that quiz.

@Garfieldismyspiritanimal

I am the same *@BoardLikeAMirror*. I thought the things I did to cope were normal and have always felt ‘not okay’.

It’s incredible to know there are other people like me out there!

I got 37 on that quiz.

There are so many undiagnosed women as we are generally more able to mask than men. Finding out that you're probably one of them is a revelation isn't it!

I have done the quiz and scored 40 - it was an interesting quiz to do. It made me realise that, for example, while I can 'do' social chit-chat, I don't enjoy social chit-chat - it's something I have trained myself to do, in fact I have a standard repertoire of remarks about the weather and so on that I repeat word for word when the need arises. I was so glad when WFH came in and I no longer had to trot it all out in the office and then waste time wondering whether the conversation had passed the test.

It is incredible, as you say @Garfieldismyspiritanimal !

Oh, why has my post been hidden?

Ah, it's back now.

Some doctors actually give you the AQ test to do when you first approach them. It gives them an idea of your traits.
You scored more than me I think. I think I got 38 if I remember correctly.

I'm so glad I worked up the courage to 'delurk' and post on this board. I have always felt so 'abnormal' and now I'm starting to realise that perhaps all along it has been a different normality and not a 'fault' in me. Thank you for listening to me. I now need to prepare and work up the courage to approach my GP, which may take time - I tend to spend ages thinking 'around' that sort of thing and then suddenly do it in a rush, like jumping off a cliff - and that's probably not the best approach.

@BoardLikeAMirror hello 👋
I started a similar thread a few days ago 'The realisation'. I did the same test and scored 32. I did it a few times and always score the same.
You have more courage than me, I will never get diagnosed and will just keep on with the 'weird' label I've always put on myself!
It's nice to meet people on this board

@BoardLikeAMirror

I'm so glad I worked up the courage to 'delurk' and post on this board. I have always felt so 'abnormal' and now I'm starting to realise that perhaps all along it has been a different normality and not a 'fault' in me. Thank you for listening to me. I now need to prepare and work up the courage to approach my GP, which may take time - I tend to spend ages thinking 'around' that sort of thing and then suddenly do it in a rush, like jumping off a cliff - and that's probably not the best approach.

Sound like a classic adult ADHD style approach to me... procrastinate about it forever then hyperfocus and burn through the thing you needed to get done once you near a 'deadline' (self imposed or not).

But yes. Do get assessed, properly. Your future you will thank you for it. Either way, you'll get answers.

procrastinate about it forever then hyperfocus and burn through the thing you needed to get done once you near a 'deadline' (self imposed or not)

Yes, that's absolutely what I do. It's hard to manage at work - I try to give myself earlier deadlines by putting things in my diary early, but of course I know the early deadline is artificial. It's a sort of reluctance to enter the 'zone' of doing a task because once I am in that zone I will have to stay in it to the exclusion of everything else until the task is done. And for that reason I need a clear diary - I can't start doing a 2 hour task at 10am if I have a 30 minute meeting at 11am - so that gives me another reason to procrastinate!

An update - I phoned the doctor today and managed to get a telephone appointment. It went so-so. The doctor was kind and helpful but not very encouraging about the likelihood of a successful referral - apparently they often get pushback and are told just to treat any anxiety symptoms. I explained I have already done the whole anti-depressants thing (if anything they made me worse) and counselling (which I struggled with as a process). But the doctor did agree to look at a paper copy of the AQ test so I have sent that off and will see what happens.

I also looked at the T&C of my private health cover (I get this through work) - it wasn't very clear but it does seem diagnostic tests for ASD and ADHD are covered. Confusingly, though, it said needs have to be checked with a 'consultant' and I don't understand how a consultant would become involved before the assessment. Depending on what the GP says I can speak to them to clarify - if the GP agrees a referral is appropriate.

I get cross with myself because I struggle to say what I need to say on the phone and it was hard to be prepared because I didn't know when the call would come, and I was having to break off work to take it, I couldn't just 'sit by the phone' rehearsing everything.

But I feel better for having done something. I have a feeling I may have to be very persistent to get anywhere.

I am so glad I had the test to talk about and print off; that was a kind of island to cling to, thank you again @ofwarren for linking it.

Well done @boardlikeamirror ! You did excellent!
I totally get what it's like trying to get over your point on the phone, especially when getting it bit of a push back. It's a huge trigger for me and I avoid it at all costs, so fair play to you

When I first started my 'journey' (hate that word, but never mind) I did the online AQ test. I scored 36. I then plucked up the courage to call my GP. She was fab.

I have a lot of physical medical conditions that I battle with. I'm shattered with it all. But i need to know stuff. So i push on. Medical professionals will often ask "what are you hoping for?" I just need to know stuff. For many reasons.

I have actually now written a book pretty much about my life and my struggles. I've also read 'Odd Girl Out' But that possibly resonated with me because the author also has EDS like me. And that is what started her on her path to ASD diagnosis as it did with me.

This board is The Best.

I think what I am hoping for more than anything else is to be able to accept and forgive myself, if that doesn't sound like a terrible cliche. I'm sure many would say that I don't need a formal diagnosis to do that, but the way I work, I function better when things are 'official'. I've spent all my life with a sense of not belonging that I would actually welcome a 'label' rather than feeling like a piece of lost property (I know some people hate being labelled, though).

Other than that, I would hope it might empower me to speak up at work about 'reasonable adjustments' - I don't mean as an excuse not to do stuff, just so that I can ask do the same stuff in a different way sometimes without feeling as though I am being a nuisance or making a fuss.

I have ordered 'Odd Girl Out'. Congratulations on completing your book @RainbowZebraWarrior - I imagine it can't have been easy to write. Do you plan to publish it?

Nah you're normal, it's that lot that are not.

I am only part way through the thread. In your position I would email or write to the surgery.

(I will go back now and read that a out 20 pp have posted the same thing )

Yay to phoning. So pleased to read that. Well done. Hoping you get through to a referral. Perhaps include more info with your aq test.

I was given a paper test and filled it in very autistically.

I may have written on which idiot put a question about walking in other people's shoes on an autism test. (yuk stinky feet)

And pointed out that I had no idea whether I bored people or not cos who would carry on if they were boring people. Still reckon it's a trick question. Fucking bastards.

There were a few other things I pointed out as well

Like how the heck do you know whether you've read emotions right?

Clearly written by a NT dimwit. (Not all NT people etc)

Same op. I clearly have a lot of autistic and adhd traits, but not sure if I actually have either, and not sure if there's any point looking into it now.

@BoardLikeAMirror

I think what I am hoping for more than anything else is to be able to accept and forgive myself, if that doesn't sound like a terrible cliche. I'm sure many would say that I don't need a formal diagnosis to do that, but the way I work, I function better when things are 'official'. I've spent all my life with a sense of not belonging that I would actually welcome a 'label' rather than feeling like a piece of lost property (I know some people hate being labelled, though).

Other than that, I would hope it might empower me to speak up at work about 'reasonable adjustments' - I don't mean as an excuse not to do stuff, just so that I can ask do the same stuff in a different way sometimes without feeling as though I am being a nuisance or making a fuss.

I have ordered 'Odd Girl Out'. Congratulations on completing your book @RainbowZebraWarrior - I imagine it can't have been easy to write. Do you plan to publish it?

Acceptance really is key. As is knowing that you are validated. That you are ok to feel the way you do. I've written two books. I'm not sure if I'll push to get them published, but it helped me massively to write down my experiences. Perhaps I'll share some of them on this board some day.