Not to pursue an ASD diagnosis as an adult

[ToDiagnoseOrNotToDiagnose]

Inspired by another thread where someone is saying that it is very important to get a diagnosis for suspected ASD.

I've taken a bunch of the validated psychological screening tests for ASD, scores suggest I definitely am.
My GP brought it up independently when I was seeing them for something else (I never mentioned it to them at all in any capacity) and offered to refer me for assessment and diagnosis. So far, I haven't taken them up on it.

So far my list looks like this:
I would love to hear other people's points to add to this list, and perspectives I might not have considered.

Pros:
would have a definite answer
might be able to access "reasonable adjustments" at work
might help me understand myself better? I don't think this resonates either - I'm the same me whether someone puts a label on me or not. And I don't find it particularly important personally

Cons:
Autism is classed as a disability - I'm high functioning, high achieving, high earning (and yes, odd, but I'm ok with that) and don't resonate with this label at all.
Potential for disability discrimination in the workplace
Potential for medical discrimination as an older adult if I refuse treatment or want to make decisions doctors disagree with - they're often quite paternalistic, so having a "disability" label makes me suspect they'd be somewhat more likely to push their views harder.
Health, travel insurances might be more expensive if it's diagnosed and I need to disclose it (no idea if this is true, but it's possible)

Neutrals:
I already work in tech and have very flexible working, so not convinced it would make any difference
There is no treatment for it
I'm well past school age, and anyway never needed adjustments for exams or assessments, so no benefit I can see here for further study or similar.
I'm not joining ASD groups or claiming it as an identity, so that makes no difference either.

So AIBU not to pursue diagnosis, or what would you do in my situation?
YABU: You should get assessed/diagnosed (because.... ? )
YANBU: You're fine without (because....?)

I didn't bother - and my GP offered it along with the opinion that it was pretty much a certainty, and various friends who are medics have said the same (but obviously cannot dx as they are friends)...

But at the same time pointed out how long I might wait for the official dx...

And I can't have any of the relevant medication.
I don't work for anyone but myself and where I sub-contract, I only do so for people who are understanding and can make accomodations for my other far more pertinent disabilities.

I am on full PIP and UC anyway, it would make zero difference there.

I already accept that this is who I am and how my brain works, and those around me do too (unsurprisingly really my partner is dx as are many friends)...

So theres really nothing to be gained from having an official dx for me - its really up to you if it would change things for the better, or not.

I think in your shoes, I probably wouldn't bother, looking at your list of pros and cons.

We have a full house of undiagnosed (and hereditary) ND in our household. DD is currently seeking diagnosis because she needs adjustments for school. Her choice; school suggested. Other DD currently out of school because of ND but not seeking diagnosis because there’s no need (long boring story). The “science and theory” of ND is nascent and I am not convinced diagnosis particularly helps. None of us need medication or many adjustments; we know ourselves well and can manage our environments within our tolerance levels, and utilise the theory of what helps where it actually helps us. Unless there is a good reason or need for diagnosis (and for some, the need to know is one of those) then don’t bother.

GPs aren’t qualified to diagnose and why on earth would a GP bring up potential autism in a discussion about something else?They don’t have the time to discuss what you go in for properly let alone something completely unrelated and that has apparantly in your case not got any symptoms that cause issues. Finally to get a diagnosis autism needs to have significant impact on life. You are “high functioning, high achieving and high earning” who doesn’t need reasonable adjustments. As such I doubt you’d get a diagnosis.

And the way you trivialise a condition that has a massive detrimental impact on life for so many people really makes me question your aims with starting this thread.

I did, in similar circumstances. In my case I felt compelled to have a definitive answer as to why I have always felt different / not quite able to work and live collectively with others despite being intelligent and generally viewed as a valued member of society. I feel a bit more able now to link my feelings to external factors - like picking up on the fact that the loud environment I have just been in was overwhelming for me, or the particular difficulties I experience as a parent. It has also highlighted my strengths and I feel more able to lean in to them since diagnosis.

I don’t feel disabled, fwiw. I feel like I have been granted something like an instruction manual for myself, and I see it as a positive.

The other point I would mention is that autistic women sometimes find their functioning getting worse or challenges become more apparent around menopause, so that may factor in.

High-functioning autism (HFA) is a non-medical term for people with mild autism spectrum disorder (ASD) or ASD Level 1

You don’t need a diagnosis

There is no mild autism.

Or high functioning autism

HFA isn't a term anymore you are either diagnosed as being autistic or you aren't. This term is not used anymore by the medical profession.

My ds has an nhs diagnosis (ie not just suspected) of asd from when he was a schoolchild and which he rejects and does not disclose - for many of the reasons on your cons and neutrals list. It’s on his nhs record and he is trying to get it removed.

In the workplace nobody knows, it’s up to you to disclose. Doctors are not going to be scrolling through decades of medical records so won’t know unless you disclose. In fact we needed doctors to know when treating my daughter and none ever did. Travel insurance doesn’t seem to be an issue for us.

You don’t need a diagnosis at my work to get adjustments, it can be a self diagnosis.

It’s a very personal choice. I’m in the same dilemma but with adhd. It would take years to get a diagnosis, I’d probably be retired by then and I’m not entirely sure what the benefit is ultimately. I realise I have already set my life up in such a way as to mitigate the impact as much as possible and learned coping strategies.

I don’t feel the same about my dd. A diagnosis for her might help lessen the impact it had on me as a younger person.

It’s not a label, it’s a diagnosis, an important distinction. It’s usually people who are trying to stir up trouble who say label, especially the late night/ early hours posters.

Your thread will attract anti ND posters and trolls that mumsnet are constantly dealing with. Did you realise that when you posted? 🧐 I think so, and like a pp, I question your motives.

High functioning is not a term used anymore. Autism is autism

I know I'm ADHD. Lived it, breathed it and dealt with it all my life. It has both made things more difficult but also helped me throughout my years.

I'm now mid 50s and whatever ADHD affects applies to me, it has just me who I am, the same way my genes has given me a short height, blue eyes, and fat bum.

It would be weird to put down what makes who I am just down to a medical condition that many other people suffer from, so not just me.

Each decade of my life, I've learnt to make the most of the benefits that come with it and to cope and adjust what makes life harder, and it feels nice to be in control of my personality.

@4C0rners at medical appointments the first thing on this screen on his record is AUTISM in caps and it automatically populates on any referral or reporting letter in the summary of conditions at the top of a letter (he has other medical conditions so it was not a one off).

No scrolling required.

I have seen the letters and been in appointments with DS when he was a late teen and he pointed it out on the screen. He absolutely hates it and thinks the specialists focus on that and are not listening to the symptoms he’s describing; everything is being put through a “this patient has ASD lens”.

I’m not saying I agree with DS’ approach but I did need to point out that doctors aren’t scrolling through records to find it, new computer systems make it very prominent.

@4C0rners just to add that obviously our hospital and gp system uses a different computer and reporting system from your dd!

We all have nhs diagnosis and that absolutely isn’t the case for us. Frustratingly so.

This!

I had to have some screeners done for a work course that picked up mine along with ADHD and previously diagnosed dyslexia. I was worried about an assessment to. Im nearly 40, not likely to have another job, no more education so for me it wouldnt benefit. I looked on the autism website and it said you can self diagnose lt's not official but for me it helps as I don't well want the formal diagnosis but know something wrong.

I don't bother either, and I understand your hesitation OP - ultimately, you don't have to be assessed if you don't want to. I'd ask GP why they think assessment would help, but ultimately would go with what you need (or don't need).

@Bananafofana Thank you for sharing. That's exactly what I'm concerned about.

@4C0rners & @YouMightBeTheReason
Not a late night troll, just insomniac & NC for this thread.

Sorry you don't like the wording. To me, I would experience it as a label as well as potentially a diagnosis, so I'm sorry you don't like that phrasing, and yes, it's a shame the world can be that way, but that's part of what I'm concerned about as well.

I'm not going to disclose medical history and why I was seeing the GP, but it was a reasonable thing for them to raise in the circumstance if they had suspicions. And whilst I agree with you in general that GPs are often overworked and wouldn't think beyond the presenting issue, this one is very kind and very pro-actively helpful and provided some of the best NHS care I've ever had, overall. And they obviously know they can't diagnose, hence offering to refer for diagnosis, which they do do.

@Anon9898 Thank you for sharing. See, I don't think it's "wrong", just I've always been "different". Interesting re self-diagnosis - I understood it was very much looked down on by certain groups.

@WiddlinDiddlin You mention medication - do you have ADHD, or is there some medication I'm not aware of for ASD? I didn't think there was any, so very interested if so.

@BunsenBurnerBaby @Sevenamcoffee @TheWayTheLightFalls @vivainsomnia @LimitedEdition77 Thank you for your perspectives and interesting points.

@4C0rners how on earth do you know what went on in the OPs consultation and what her GP is like and how much time they give their patients? For the record I have a relative who's GP has just done the exact same thing in a consult but for adhd.

I have a ASD teen DS and it has been extraordinarily helpful to him to get his diagnosis. It means that he can explain his self described and perceived 'different-ness' to his friends and teachers. He is able to be taught in other more helpful ways and he learns better. He will have more successful academic outcomes.

It is helpful when I take him to a GP or to explain why he has never and will never consent to seeing a dentist.

He finally has a group of people he can identify with, other ASD friends at school and celebrities.

However I can absolutely see why you wouldn't want the label. My DS is so obviously autistic when you talk with him, but if you are not, and you are already succesing in a career, not finding that your possible neuro diversity hold you back in any way and you are happy and content, I would absolutely not go ahead with it.

I am hope you come to the right decision for you. 🌷

It’s really your choice whatever feels right for you. I had no choice as I can’t function in so many ways (I can’t speak which is my biggest problem) and I can’t manage with day to day things and needed a diagnosis to explain why I can’t work

My daughter is 22 at 17 she was really struggling with her mental health (in the middle of Covid lockdowns) She needed a lot of support and during a psychologic assessment it was said she was likely autistic. CAHMs didn’t feel she met the criteria, her school (she was very good at masking) but also due to Covid her sixth form had only known her for 5 months.

She has chosen not to at this time seek an diagnosis- she accepts the likely results but waiting for months/years would probably be more triggering. (The process bit not the diagnosis)

With her original assessment she had access to the right support during university. Amazingly had recently got onto a grad scheme job. The support through the interview process provided definitely helped her (it was levelling everyone got the questions etc choice in person or on line interviews)

She still has therapy when needed. Recently we could see burnout so make sure she has a space and awareness. Her health anxiety is something that has to worked through especially with changes going on. That’s all we can do - support when needed and ensure she can access it.

One day she may decide to get a formal diagnosis but for her and for now it isn’t something that defies her.

Maybe we should have got a diagnosed maybe if we realised when she was younger and she wouldn’t have struggled as much, maybe she would have friends or understand how to maintain relationships- BUT we are where we are now and she is now an adult (probably needs more support than most 22 yr olds but that’s ok and we will our end do what we can)