AIBU to find it incredibly frustrating that there are basically no resources in the UK for people like me?

[Maybeasd]

I’m genuinely starting to wonder whether I’m being unreasonable or whether this is just a massive blind spot in the UK.

I’m a woman, adult, functioning perfectly well in life for the most part, but I’m very cognitively able and have always been. I’ve been properly assessed and this a known entity (I was not born nor raised in the UK for context).

The issue is I’m finding that there are only pathways if you’re struggling but not if you’re just curious. I’m not only talking about the NHS, even privately I haven’t been able to find someone who hits the spot.

I’ve looked into:
ND assessments (very binary, very impairment-focused)
talk therapy - after years of it total waste of time and money.

People in the US suggested to find a neuropsychologist but they have eye-watering costs, mostly framed around brain injury or rehab

It’s either you’re ill or you’re fine, stop asking questions.

I’m not looking for validation, labels, or coping strategies.
I’m just trying to understand how my mind works, and it feels like that’s somehow illegitimate unless I’m suffering.

So… AIBU to find this incredibly annoying?

Yes I can agree with that. That’s doesn’t mean I don’t want to understand it any less. If you don’t want to, that’s ok too.

I'm curious as to what you think understanding it will give you? What's the outcome you want?

You're spending a lot of time, energy and potentially money on it. What for? How will it benefit you?

Well just knowledge. Does knowing a lot about nuclear bombs (one of my interests) benefit me beyond the pleasure of knowing more? No, not really.

it might give me some insights about why X or Y happen from a neurological POV and I find that cool.

It’s not clear what the problem is sorry.

there are lots of routes for most issues, what I think you’re asking is you want some form of state funded support.

No I’m not. I’m happy to pay.

Thank you for the update on the cost in your home country, it is of course material to your complaint and it would have been helpful to know that up front. You are very lucky to have health care back at home where you can get a free mammogram appointment in what (I assume? ) was a short time period.

What was the result of the second colcospy? I'm intrigued why you were suspicious about the first.

From my first level search

Can neuropsych testing be done online?

After consultation, one of our certified professionals will administer the neuropsychological tests, which can be done remotely.

https://regionalpsychiatry.com

Telehealth Neuropsychological Testing | Regional Psych

Is it worth all the time, energy and money? When you could spend this on your family or other interests/pleasures? Why is this more important than the rest of your life?

They can’t be all done online. Because at least some of the ones I’ve checked d(and I do care about the sensory side of things) they need to look at the eye movement.

So yes dome can be done online, but not all.

colposcopy wise the result was the same so I let it rest, and it did resolve itself.

Our public system is a lot more “hands on” and that can be good and bad at the same time. So after almost 20 years of having access to both I’ve landed on a good middle ground.

Many of these special traits you are talking about are unremarkable in themselves. I know 2 people with aphantasia, both interestingly are software programmers, but neither are obsessed with the workings of their minds like you are. Surely there are much better sites to look for this kind of information then a website for parents. Or perhaps this is just a good new way for you to get people to talk all about you for a little while?

If you go home regularly, can't you just get your neuropsychological assessment there then?

This is what a highly intelligent person would do. But then she wouldn’t have been able to indulge herself with a whole thread talking about remarkable she is 😀

Good call, I’m not going this year, but it can wait til next.

Honestly OP your best investment would be to get a private ASC assessment - ideally one that covers not just ASC but a range of conditions though I don't know if that really exists in the UK any more. There seems to be a very closed approach to diagnosis these days especially in the NHS where you only get assessed for one condition at a time, e.g. either ADHD or ASC not both though they can overlap.

Anyway it's not so much the diagnosis itself that's valuable, it's the specific tests and observations they'll do along the way, that will tell you where your obvious cognitive strengths are being undermined by deficits (probably social-communication ones, maybe others too). And see if you can go multi-discplinary, clinical psychologist but also speech and language therapist, there may be issues about your ability to manage pragmatics (as a graduate linguist you'll know what that means!) and to read non-verbal cues.

If you can, look for someone like Simon Baron-Cohen in Cambridge. He's a very smart guy with a strong interest in theory and neurology. His approach could be good fit for yours. Good luck!

Have you done any of them online?

You might come back with such ordinary results that you decide paying for face to face and sophisticated measurements isn't worth it.

Have you done the ASD and ADHD tests? The adult ADHD professional test, Diva, is available online.

colposcopy wise the result was the same so I let it rest, and it did resolve itself.

That's interesting. So in the last few posts you've told us about demanding tests from the NHS twice which turned out to be unnecessary except for your own peace of mind.

Do you generally have worries about your health, and is this drive to know how your brain works part of that?

I don’t worry no….. But after having a disastrous c section, the system overlooking my iron deficiency for 12 years, and being misdiagnosed with skin conditions when it was just perimenopause… I think I every single right to get things checked twice.

but other things I don’t bother. I also have hypothyroidism and the standard in my home country is to test more than TSH, I know they won’t here, but at this point it’s not here nor there for me.

I would start with some mental health charities, and then make donations.

I’ve found citizens advice bureau excellent, again you can make donation if they point you in the right direction.

i know this suggestion may not be acceptable to some but ChatGPT is excellent for advice

hope that helps

Well, problem solved then.

Also to add the hypothyroidism is sub clinical (no symptoms) I t was only discovered due to a routine check in my home country, but even though I have no symptoms I’m on a highish dose (100mg)

Much as I think the current social care system isn’t working well here, in America it never has. It’s more about money there. Many people don’t have access health care. Because they don’t have money they are not sene as having “worth”. Think of all the poor neurodiverse or gifted geniuses there.

I'm sorry you've had some issues, the NHS is certainly struggling lately. It certainly isn't in any position to run tests to satisfy your curiousity, but then again I don't think it ever should be when it's funded from tax.

I was overdosed by 25% last year with a drug that's very dangerous for eyes, I get the need to be vigilant about your own health.

I don't know of any other health service in the world that's free at point of use which isn't insurance based with additonal payments by the user to get the best level of care.

Can you tell us what country you're talking about and how much the health care costs you in insurance payments and copayments for treatment and drugs?

I know (of) someone like the OP except in classical music circles.

I say "know of" because no one can stand her she is so insufferable. Nobody wants to cross paths with her on a music course or rehearsal.... or worse be lumped in a group with her. She is so gifted and cannot stop talking about it.

She has to be the best in the room at absolutely anything and it is her entire personality. If she says something isn't her strength, it will because she unblieveably strong and gifted in [insert whatever area] to counterbalance it. It is very important to her that people know how clever she is. And that she is smarter than all of you.

We can't stand it. She probably has no idea the lengths people go to avoid her. Even the tutors. I kind of feel sorry for her to be honest.

I think some parents obsess about their children's "giftedness" to the extent that the child internalises this and comes to believe that it is the most important thing about them. I feel quite sorry for them as well.

Maybe you're right. She never talks about her parents though so I've no idea.

She is amazingly talented, granted. Don't get me wrong. She is clever and gifted - no doubt about that.

But insufferable.

"Hinges" made total sense to me. I was happy to take it on trust that being able to figure them out in 3D was actually a niche skill, possibly akin to my autistic son's childhood hypercompetence with K'nex and jigsaws 😀