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

Hi Rainbow.

Your friends reaction is common - one of my best friends was surprised by my diagnosis. Even though their laughter hurt you, it wasn't meant to hurt you - they probably thought that they were helping you.

You talk about being "believed". In my experience the assessors are not looking for you to convince them, as if it was some kind of court trial. They will really take on board your experiences. One of the first tests I did for them was actually about camouflaging (masking) which I scored highly on (I can easily pass as neurotypical for a few hours - but then need hose myself down and have a rest). So these days they are aware of masking and can take it into account.

I didn't even involve my family in the assessment, as I knew they'd be biased - my wife took on that part - maybe your partner could too.

The assessment process is usually in 4 stages and you pay for each stage separately. The first part is the cheapest (around £200) which is basically a load of tests along the lines of ones that you have already taken - the outcome of this says whether it you should be considered for full assessment. I don't know how feasible this is, but theoretically you could do that part privately and then take that result to the GP. Then you are not convincing a GP who's knowledge of autism is from the 1930s.

I can tell you who did mine with a description of the steps, if you like AND if this is allowed on the forums... (I'll check back tomorrow...)

Good luck!

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Thank you for your detailed reply. This has given me a good further insight. 

I think I need to take the leap and make the first steps. 

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...

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. 

I was so desperate to know asap by the time I decided to seek diagnosis that I borrowed some of the money from a family member, then paid back as soon as I could - over about four months. If that's an option for you, Rainbow, maybe consider it. You can always ask them (if you trust them enough) to tell nobody else about the loan or the appointment. The fewer who know ahead of you getting to process the outcome, the better.

Hello,

I am in my late 20s and recently got a diagnosis for Autism this year. I always thought I was autistic and although I was on the Special Educational Needs when I used to be in school, they didn't think I was autistic because I could make eye contact, albeit through masking, and could talk, etc but these are such outdated views. 

Of course everyone has different personal experiences post diagnosis which are all valid, but for me personally having the diagnosis validated how I felt, why I struggled and excelled in certain areas etc. I would say it doesn't matter what people say, your struggles should be validated and if you believe you could have autism and want a diagnosis go for it. 

I also mask heavily and the people who do ASD assessments are trained to look at masking. Initially I was going to go through the NHS route. This involved speaking to the GP, telling them why I believed I was autistic. They then referred me to a ASD provider, I had to complete forms which were very similar to the online tests I used to take. After that they then put me on a waiting list for an assessment. However the waiting list in my area was a minimum of 3.5 years- 4 years. Nhs right to choose wasnt much different. In some areas waiting lists are longer. I was in a bad way and did not want to wait that long so in the end I went private. The private route meant I got an ASD assessment and diagnosis in two months. Each private provider cost slightly different so you would have to look. Mine was about £2000. I am aware I am incredibly privileged that I was able to save up to afford that but many people would not be in the same situation.  It is your jurisdiction but i would perhaps go to your GP start the process and they can tell you how long the waiting list is in your area. Also look at private options because as I mentioned prices can vary

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.