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

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.

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.

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 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)

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.

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.

It can make emigration difficult if not impossible !

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.

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.

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"

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.

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.

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.

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.

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.

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 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.

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?

This is the flip side of “it all makes sense now” isn’t it. Scary what can happen if it’s official. People also question your intelligence which is ironic considering many autistic people have above average intelligence (not including those with high support needs though I also think they’re highly intelligent just not in a mainstream sense, judged by society’s strict standards)

Yes, this is the reason for me also. I don’t want it on my medical records because I do believe it will close some doors in the future. There’s not any benefit to me getting an official diagnosis, I’d rather spend the money on a holiday.

I suspect that if I underwent the tests, I would be found to be on the autistic spectrum. I don’t have the tests because I don’t understand what possible use it would be. I have a successful life. I have some difficulties in some situations but I just manage those in my own way. I’m 47, I just don’t see how it would help; it’s just me.

That’s not to denigrate the experience of anyone who does want a diagnosis and who would benefit from it.

It’s been suggested before that I might want to go through an autism diagnosis process. My reasons for not doing are:

• I’ve been quite successful in my life and goals. I think me getting a diagnosis is unhelpful to people who do actually struggle to thrive with autism, and so given it wouldn’t change anything about my life I have no need to take someone else’s space in the diagnostic process, or to contribute to a perception that you can get on just fine with autism if you are so inclined.
• It’s not a black and white objective diagnosis. If it was a blood test then maybe I would, but given it is a broader assessment then it’s possible to be assessed incorrectly. I’m quite big on personal health data, but I struggle to perceive an autism diagnosis as data in the same way.
• Ive seen diagnoses in my family where they now use the diagnosis as an excuse for bad behaviour and think they have no power over the traits related to their diagnosis. I have ways that I deal with sensory overload/social fatigue/needs to decompress etc. I can see how I would do away with some of those coping mechanisms and just be like “oh it’s the autism”, but those masking/coping mechanisms are the reasons I’ve been able to progress at work and meet goals etc, so I don’t want to give myself an excuse to take an easier path.
• If I am autistic, it’s just part of the way I perceive the world, I don’t need a label for it, and if I had one I doubt I’d share it much with others. I have aphantasia for example, and feel no different now I know it has a name. I operate in the world in my own way, just like everyone else. It doesn’t need to be clinical.

A hefty caveat to the above is might not have autism, and so my view on the above is totally invalid. But I wouldn’t be hugely surprised to get an autism diagnosis based on the reading I’ve done. I think it can be positive for some people, but if you’re not yearning for that explanation or for a reason as to why you don’t fit in, then I personally don’t see what benefit it could bring.