Worried about getting a diagnosis and being believed. Please share your experiences

Hello!

I am a woman in my 30s and Ive decided that getting a diagnosis would give me validation of my struggles throughout my life. However I’m worried I won’t be “believed”.

I have asked a couple of friends previously whether they have ever thought I could be autistic but they’ve almost laughed and said no. This has put me off confiding in anybody else.

This isn’t something I’ve thought lightly about, I have spent hours relentlessly researching into the late diagnosis of autism in women. As well as a lot resonating with me I have taken online tests etc. 

AQ 50 - 36

Cat Q - 158

I’ve come to realise I mask a LOT therefore I’m scared that the assessor will think I’m not autistic, as my traits may not be obvious. I don’t even know what the first step is to take. I don’t want to speak to my GP as I’m worried I won’t be believed, I don’t know whether I’m in a financial position for a private diagnosis, I don’t even know how much these cost.

Parents
  • Hi. 

    I can well understand these fears, but the fact that you have thought about it so deeply and researched so widely is very significant. Somebody not suffering from the exhaustion and anxiety that are intrinsic to autistic life might dip in with idle curiosity on a rainy day to an 'are you autistic?' link they've crossed paths with by happenstance. Whereas in your case there is sufficient ongoing (because you were born neurodiverse) evidence of being continuoisly disabled by NT-favouring environments (ie. everything outside your front door!) to have found your way inevitable to this persistent question. 

    In my case, I denied myself the possibility for so, so long because it was too 'easy' (nonsense), a too convenient 'excuse' (also nonsense) and while it would increasingly cross my mind as middle age stole away my last always-meagre-anyway energy reserves keeping me from total burnout/meltdown, I felt a kind of embarrassment about claiming that identity for myself let alone seeking formal diagnosis (though in my personal case I was always going to require the latter to feel validated enough to comfortably self-descibe as autistic). 

    In the end it took about three total breakdowns in close succession, and one very kind friend (a formal colleague) reaching out one day out of the blue to (I thought bravely) say... 'Have you ever considered...?' I will never be able to adequately express my gratitude for that. Quite simply, it tipped the balance for me, gave me permission (as I was framing it then) to go and seek diagnosis. Which was indeed expensive (but beat a four year waiting list at the end of which I'd have been insane!) but beyond value in how it's helped me tilt the mirror on my own life. The missing jigsaw piece was finally there and the whole picture made sense like never before. 

    Obviously I don't know you well enough to be the equivalent 'permission' catalyst like my friend mentioned above was to me. But if my thoughts/impression of your situation even slightly counterweights your own two friends' all too easy (and I'm sure well-intentioned, if ultimately inadvertently damaging) dismissal (NOT the same as objective invalidation) of your suspicion then I've maybe done my good deed for the day :-) 

    And don't forget, some of us are extremely good maskers (especially if we learned from the best - in my case a parent primarily, that's very clear to me now), always reflexively and never as an act of calculated will, and what your friends don't see is the massive struggle and  drain on your batteries doing something that is as comparatively easy to them as breathing.

    If it helps, I know people who after diagnosis said to me 'I could have told you that, it was so obvious' and others who've raised a sceptical eyebrow. And even one well-meaning family member who dismissed even the formal diagnosis with a laughing 'No, don't be silly' then later retracted that as they could see how it spiralled me into imposter syndrome.  

    So... given all of that admittedly anecdotal experience, I hope it gives you some resolve (not easy I know) to trust your own instincts and feelings here, save your pennies, and find out. You'll either get definitive confirmation of you won't, and even the latter scenario would still give you some insight via 'we think you do have neurodiversity traits x, y and z' etc. All very helpful and validating of difference in itself.

    You're here, in this community, and that didn't happen without significant challenge. I wish you well. 

  • Thank you for your kind and informative message. You have definately helped me. 

    I feel at the moment that this is consuming me and taking over everything that I do. I’m very lucky to have a supportive partner who will support me in every way possible, and also believes I am autistic. However, I struggle to speak to her about how I’m feeling and instead spend hours doing detailed online research to get some self clarification.

    I have a history of “taking it too far” when drinking and not knowing my limits. Every time I have been drunk recently it has resulted in me crying to my partner about being autistic and finding life hard, then the next day I am filled with anxiety. 

    Gone slightly off track, but thank you. 

Reply
  • Thank you for your kind and informative message. You have definately helped me. 

    I feel at the moment that this is consuming me and taking over everything that I do. I’m very lucky to have a supportive partner who will support me in every way possible, and also believes I am autistic. However, I struggle to speak to her about how I’m feeling and instead spend hours doing detailed online research to get some self clarification.

    I have a history of “taking it too far” when drinking and not knowing my limits. Every time I have been drunk recently it has resulted in me crying to my partner about being autistic and finding life hard, then the next day I am filled with anxiety. 

    Gone slightly off track, but thank you. 

Children
  • Glad to have helped. :-) RE: the being consumed by it. Hperfixation/monotropism is something many autistic people have, and I'm no excetion. It cam majorly impact on one's life - and while it can't, and shouldn't, be 'cured' -it's just how we function - at least knowing it's there and why helps in all sorts of nuanced ways. There are monotropism tests you can take (I'm sure a recent thread here linked to one) and maybe if you get a high score you could add that to your 'the case for...' portfolio (so to speak) when approaching a GP, talking to your partner, or whatever way you begin to work out teh path ahead. Hope all goes well, you deserve to suffer less with this so I hope life is at some point soon a little kinder to you...