To wonder whether anyone had found getting an adult autism diagnosis to be a negative experience overall?

[MaybeND]

Nearly everything I’ve heard about adult autism diagnoses has been really positive. There’s lots of, ‘Now my whole life makes sense!’ …. ‘I understand myself so much better now!’ …. ‘I’ve finally found my tribe!!’

I’m wondering though whether has found a diagnosis (or even just the suggestion of one) to be a negative overall?

My experience might have been a little different because I went private (at the time there was no possibility of being assessed on the NHS) As such I told my manager, who has been very understanding and it's helped her to be a bit more accepting of things I need, like quiet!
However I haven't actually told my GP - no reason, it just hasn't come up - and I've told a few good friends but that's it. I suppose there could be times I'd need to 'declare' it, but generally I've kept it pretty private, and feel the information is under my control.

@MaybeND it sounds like the therapeutic relationship isn't great perhaps, it's important you have some confidence in the person you see - do you have the option of speaking to anyone else in their team?

I have chosen not to seek formal diagnosis as it’s expensive and wouldn’t benefit me. I know what I am. It also can limit your choices (eg the Australia visa rules, and I think Canada too).

I would only bother if the benefit would outweigh the negative - but I can’t see a scenario where it would.

Most of the time the practical benefits people have experienced that I've heard of (ie compared to the personal ones like self acceptance) have been in the workplace. IE being able to ask for reasonable adjustments.
Appreciate if you're not in work/seeking work, or perhaps have found a niche that is well suited, then those are less relevant.
I haven't found it used in any discriminatory way, though emigrating isn't on my bucket list. I don't like change!

I was diagnosed as a child and until recently felt it an overall positive experience, but in the last couple of years, had some downsides, some health stuff (unrelated completely) being dismissed as I’m autistic and must be anxious. And the increased difficulty as others have mentioned in emigrating. It doesn’t out weigh it but if I could magic the diagnosis off my records I potentially would think about it.

Did you ask her in what way it would benefit you?

The thing that always strikes me is that whether or not you get a diagnosis, you are you, and you have the qualities and limitations you have. Most of us as we age get a handle on what those might be and where we struggle.

If there are techniques that work for people with autism, there is nothing that stops you from trying them out without a diagnosis, and if they work, great!

It's a bit like the story of the man who carried the raft on his head. Maybe a diagnosis is useful if it gives you something concrete, like a raft to get over the river, but then, you don't need to constrain yourself with it. And if you managed to wade the river yourself even less reason to carry around a stupid raft.

She says it will help me understand myself and that I’ll find my tribe. Those old cliches.

She referred me to a colleague though who said she is ‘yet to be convinced’ I am autistic.

You don’t need a diagnosis to find your tribe. If it’s your tribe, you’ll fall into it naturally. ND tribes are, in any event, aware how hard and expensive it can be to get a diagnosis, so it’s not a magic key to entry - they’ll accept you anyway as long as you accept them.

It's a massive spectrum they probably don't want people like my son who's severely autistic and hugely disabled by his autism, won't ever be able to work or live independently
But of course there will be many autistic people who will have skills they find desirable.
I doubt it's an arbitrary ban.

It's a massive spectrum not everyone with autism is highly intelligent some ,are some will have average intelligence, and some will have a range of learning disabilities.

Having 2 DC diagnosed autistic in the last 18 months I've learnt a lot about myself in that process and I'm pretty sure I'm autistic too. But I'm not going to look for a diagnosis because I don't think there would be any benefit. It was absolutely necessary for DC to explain their school struggles and to access more support but for me I've got to a place where I can manage life and don't feel I need additional accommodations.
I've found myself in a job with routine and structure but also a good degree of autonomy, and my own office to block out noise. I have a (probably also ND) DH who understands I need quiet time and sometimes can't "people". I have friends who understand I'm always the first to leave because I get overwhelmed. Speaking of friends, the "finding your tribe" happens regardless. You don't need a diagnosis to find people who "get you"

My sister got her autism diagnosis earlier this year at the age of 43.

We've known she was autistic ever since we learnt what that was.

It was only in this last year that it became useful to her to have the official diagnosis. It was something she sought out on her own, no one else encouraged her to do so.

My psychologist said last time I saw her that she feels it is unfair to those neurotribes to have self-diagnosed people join and that I really owe it to them to get a diagnosis (for £1500 from her mate in Harley Street).

Your psychologist doesn’t sound as though she’s giving healthy advice, or advice aimed at benefitting you. A psychologist should of course explore with you whether you believe you might have ASD, and your feelings around seeking a diagnosis, but they shouldn’t be pressuring you to seek one if you’re hesitant or making up nonsense about “tribes” and how you won’t be able to find any new friends unless you have one.

As previous poster said, your “tribe” is the people you gel with, and ND people are just as different and varied as NT people, the idea that you’d automatically want to be friends with people (or they’d want to be friends with you) simply because you share a particular diagnosis isn’t likely to help you form genuine friendships.

It can make emigration difficult if not impossible !

I think the point the psychologist is trying to make is that there are quite a few ND people who resent the number of people with so-called "TikTok diagnoses" - ie. - those who have seen a TikTok video and decided they must have autism (or ADHD) because they share a few traits they've seen online.

By all means use those videos to explore whether you might have enough traits to go for an assessment, but you can only be diagnosed with autism if you fit the criteria and if it's deemed to have significant impact on your life.

You should get an assessment if you think it is the best thing for you and will help you to know one way or the other. £1500 is a lot of money, you could try via NHS first. Or look around to see if there are other organisations who may be able to help. I would suggest if possible having a someone who also works as an NHS psychiatrist do it as it is far more difficult for your GP to ignore their opinion.

As for the self-diagnosed thing, I have a bit more sympathy for that comment. A ton of people are jumping on the ND bandwagon (tiktok etc) because it's seen as fashionable and quirky. It is making life a lot more difficult for actual ND people to be taken seriously.

And the tribe thing - yes and no. I have had a lot of ND people "come out" to me since diagnosis and I do get on very well with most of them. But some ND people can get stuck in an echo chamber, particularly online, and become quite aggressive to/dismissive of NT people. This is unnecessarily narrowminded in my opinion - I am just as happy to meet and get on with NT people as I am those who are ND. You do you and you will find people who get you, regardless of who they are.

Don't worry about coming across as different. We are all different. Psychologists are trained to spot various traits that the average person would hardly notice.

It’s been a negative experience for me in some respects (adult adhd diagnosis) because of the lack of support the NHS can provide. I was receiving titration when funding was cut and I’ve been left on the same dosage of my meds since February. I would also echo others and say my family don’t really accept or care about my diagnosis (as in parents etc). They think it’s a load of nonsense basically. So I guess it depends what you expect your of our diagnosis e.g meds/family support etc.
(edited for grammar)

I have an NHS autism diagnosis that is not on my medical records. The clinic/diagnostician is not allowed to share your medical information without your permission so I did not give my permission.

It's been positive and negative for me. I got diagnosed last year. Positives are that I understand myself better and feel less ashamed of being "wierd" (although this hasn't translated to any unmasking, just to me berating myself less), and I understand my sensory issues and can at least do something about them. Two of the small number of people I've told about it turned out to also be secretly austisitc and they don't treat me any differently which is great.

Negatives are that some close friends have reacted in ways that haven't been the best, one treats me as if I've suddenly become stupid and don't understand my own mind anymore, and one thinks it's very exciting and wonderful and has started diagnosing everyone and their dog with it. I think other people's reactions can be a problem and keep telling myself what one autistic youtuber (can't remember who) said which is that as long as people aren't actively hostile then it's ok. I've had the "we're all on the spectrum somewhere", "you must be very high functioning" and the worst "you don't have real autism" - followed by that person self-diagnosing with "real autism".

There's no support available really. There are some groups I've found which are online but at times I can't get to as they're on when I'm at work. It hasn't helped me find my tribe either, I actually feel even more anxious about trying to meet people now as I know I'm definitely different and that many people aren't going to like that, rather than thinking that I was just a bit of a geeky "normal" person.

Mine is on my medical records. I've never told a soul but an early help woman who was helping my youngest DC raised it with me 😠 . However she did clearly think I was doing OK as she applied for DLA for my child, said we no longer needed support and put her autism assessment though. The DLA does come in handy for her tbh.