Just diagnosed - some questions

[HecticHedgehog]

Hello,

I was diagnosed with asd this week. I keep thinking they must have made a mistake, is it normal to feel this way? It seems ridiculous when I obviously asked for a referral!

Did you tell many people and do it think it changed how they are with you? I'm quite dubious of telling my parents as my mum already told me I'm not autistic when I asked her to fill in the questionnaire . I have visions of them saying I just knew how to answer the questions as other people in my immediate family already have a diagnosis.

I'm not sure I'm going to tell colleagues but I have told my boss. Is there anything my employer should do now they know?

Thank you

Completely normal post diagnosis. Expect various other emotions to come up as well. There are other similar threads which might help reassure you.

Ps welcome to the club!

Thanks

As per @BlackeyedSusan it's completely normal. I knew I was autistic, and post diagnosis, I felt huge relief. It didn't last. I doubted the assessor, doubted myself, convinced myself that I'd cheated the assessment and the diagnosis was wrong.

I got DH to call the place I had the assessment multiple times with questions. I couldn't call myself as I was so overwhelmed. I must've been a right pain in the arse!!!

It takes time to digest. Just be kind to yourself. And don't listen to your mother. If she makes comments like that again, that you're not autistic, ask her when/where she qualified to make that diagnosis 😀

Re: your employer, it's personal choice whether to declare or not. It depends, IMO, whether you require reasonable adjustments.

I was advised to let the dust settle before deciding who to tell. You can't untell.

However, my speech therapist is foreign, and explained how she tells people she's not a native English speaker and that her English isn't as good as native, (it's still bloody good) so that people are understanding. It helped me to think about whether to tell about being autistic.

Still working on that (2 years on)

But I have started hinting at it to trusted kid's teachers. (Head of house)

And a trusted teacher in the SEND dept.

Eek. Worried.

The imposter thing seems a fairly common reaction. I’m going for an initial screening next week and already I am convinced I am some sort of DSM 5 category of my own called ‘well read time waster’. I half believe my deep dive into reading and research on autism in women means I’m sort of method acting the entire thing; my experiences with relating hard to the autistic women I meet is just me having poor boundaries etc…. I think this is how our being resilient and creative in our adaptation to an often hostile world confuses us because we almost don’t see that it’s a struggle, it’s just our life. I am also, by the way, steeling myself to be told to bugger off (nicely, of course) and that in no way do I meet the diagnostic criteria.

Ha, 😄...so true @Craftycorvid

What a brilliant description. Felt the same.

Ok, so I was very nervous before my screening appointment, but the psychologist was lovely and it felt more like a great conversation with an interesting person who got me. She felt there was enough there to warrant a full autism assessment if that’s what I wanted to do, but there was no pressure and she was very affirmative that for some people just the acknowledgement by a professional that they are likely autistic is enough. I’m going for the full assessment. Think I’d decided that already, as long as the psychologist supported it. Just posting because I hope it may encourage people wondering about getting assessed. It’s mainly a sense-making process about my past and my parents (also likely autistic) but it may be that in the future it could matter that a diagnosis is recorded, for example, should I need care in later life.

Recently diagnosed and had all of these thoughts ^^

@HecticHedgehog just wondering how you are doing? I had my assessment yesterday and formally became autistic. I am at the relieved stage and waiting for imposter syndrome to drop by. It’s making sense of everything in my current life that has been perplexing, and it’s basically given me my childhood and parents back as experiences and people who now make perfect sense. I hope you are finding things are better now you know. Don’t know how many people in my life to tell yet, or how.

I'm good thank you. Think I'm still in the imposter syndrome stage! I haven't told many people despite thinking I would. I hope you're feeling ok about yours? It takes a little while to settle I think even if you really already knew and are pleased to have answers

I’m feeling as if the world just got tilted a bit sideways and then someone just went ‘and carry on as you were’. It’s rather odd! I’m going about my business today almost looking over my shoulder (potentially in case the autism police come looking for me?!) 😆It is obviously still sinking in - as you say, settling.

@Craftycorvid interesting to read your posts, I've just had my screening assessment and had all the same thoughts as you (did I selectively pick childhood memories to frame things a certain way, is it because adult female autism is trending on tik tok etc etc)

The assessor told me that any one of the childhood examples I gave would be enough for her to recommend a full assessment, let alone all of them. I'd even picked a company that use an assessment screening that I 'clicked with' less (the assessor specialises in DISCO diagnostic criteria) so that it would feel more concrete.

Full assessment booked for next month, I'm weirdly nervous and excited. I really was expecting to be told that there was no indication other than perhaps some personality traits.

She said that she was pretty confident that id meet criteria and it was up to me whether I wanted to go for a full assessment, esp because I'm self funding privately. She laughed when I said that I would because I'd prefer the certainty. Presumably for most people, knowing that you've got an experienced assessor telling you 'I've been doing this for 30yrs and my gut instinct is X' would be enough.

@Brieandme Interesting to get your take, and thank you. I had thought the assessor might use DISCO, but she used MIGDAS 2 instead - not yet NICE approved but likely to be so in the future. Her point was that ADOS is just not suitable for adults anyway, and relies heavily on observation which clearly does not serve people well who mask pretty effectively. She asked me a range of detailed questions covering sensory issues, interpersonal relationships and how I navigate change and transition. I’d suggest another reason your assessor laughed is that such thoroughness (ie it not being sufficient for you to hear ‘probably’ - as it wasn’t for me) is a very autistic thing in itself - wanting the absolute belt and braces with evidence for everything. I can relate!

And best wishes for your assessment, too! Come back and tell us how it went. 🙂

@Craftycorvid yes that was it, she said it was quite a typical response. I can't remember if she uses DISCO for these assessments, but when I was reading her credentials (as I've had to go private I researched to feel confident about a company being reputable) that was her area of speciality, I think she was involved in the development of it IIRC. Certainly she does a lot of work with adult women and considerations about masking etc.

I hope you and everyone else who is in this process is adjusting ok!

Even though I've not had a diagnosis it feels weird for someone to say 'yes I think there's definitely something in this'. It's more than I was expecting already. Personally I have other factors that I've always felt were the reason of things being difficult (eg family issues at home) and I think I expected her to say that was the likely cause, or that that clouded things too much to be able to have an opinion.

@Brieandme Yes, it is very weird when someone just agrees! I’ve been told ‘no you’re not autistic’ with great authority by someone with far less knowledge on the subject than I have. Like many of us on this journey, I don’t ‘look’ autistic and so people assume I can’t be. For the psychologist to nod and say ‘yep’ sort of disarmed me! It was weird enough sitting down and saying ‘I think I’m autistic’. It was disconcerting that she picked up things I do and differences in how I communicate that aren’t typical but which I hadn’t realised I did or that they are unusual.

I mostly “pass” for normal so I usually don’t tell people. I find that if I tell them they start treating me like I have a learning disability, and obviously I don’t. In fact I’m brighter than average, have multiple degrees etc, I just have no social skills. I only tell if it benefits me, eg if I’m requesting reasonable adjustments or applying for an opportunity that prioritises ND applicants.

@Blamunge I think fear of being treated differently or less positively is a factor in whom to tell for me, too. Then there are people I’d like to tell but I’m not sure what reaction I’d get. As in, I don’t know how much credence they give to neurodivergence unless the person is very clearly impaired in multiple ways.

Well if I told my parents they’d scoff and say it’s a load of rubbish, because they’ve always denied my difficulties. That’s why I got no help or diagnosis when I was younger. To them autism is being non verbal and mentally disabled, they won’t accept the existence of high functioning autism. They think my difficulties with noises and bright lights are just “being soft”, and my difficulties with social interaction and getting upset about changes to my routine are just “being ridiculous”.

In fact it’s a common assumption that autism is an intellectual disability which results in low IQ and inability to function independently. That’s why I don’t tell people, because they assume that’s what I am and they treat me as such. When in fact I’m a mum with professional qualifications, I just struggle with people and noises and bright lights.

As a child, I was generally labelled as having to ‘have my own way’ when I got angry and stressed due to a change of plan or something. Finding that my clothes sometimes felt like wearing scratchy armour on a bad day was all part of being ‘neurotic’ in my late teens and early twenties. I can’t expect the people in my life back then to have been completely aware of autism in women and girls (heck, no one was) but I’m somewhat nervous that people might think I am ‘faking it’ (why anyone would is another question) because I appear very capable - I am very capable. I also struggle to know what to do in some social situations, need a lot of alone time and get overloaded by environments that are too loud/busy. My relationships have been problematic to me because of how I think and process my feelings. It’s all hidden!