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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Not to pursue an ASD diagnosis as an adult

32 replies

ToDiagnoseOrNotToDiagnose · 22/02/2025 04:12

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....?)

OP posts:
cherish123 · 22/02/2025 10:59

I would not bother. It won't achieve anything. I don't think work will make adjustments. You still have to do your job.

scanni · 22/02/2025 11:17

As someone who struggled with being misunderstood, misdiagnosed and wrongly medicated for years due to autism there wasn't really an option to not be assessed and subsequently diagnosed.

You haven't really said how you are impacted by this potential autism, it sounds as if you are functioning well, so perhaps autism isn't your answer - particularly as you don't know whether to be assessed or not.

Frowningprovidence · 22/02/2025 11:23

I feel similar to you. My son needed a diagnosis to access specialist support and will need adjustments throughout his life.

But I think, as an adult in your position, you can just think those strategies that autistic people use to get through life, work for me and if you are looking for treatment for mental health issues you can have in mind, is this effective for people with autism as that might be relevant for me.

I also think the adjustment thing at work isnt straight forward. In that having a good employer who wants to work with all thier employeees can make a bigger difference than having to try enforce the equalities act with a bad employer.

That's not to say I think all adult diagnosis is not relevant. In many cases it's essential and best done before crisis.

DeffoNeedANameChange · 22/02/2025 11:30

We have a lot of autism in my family. And I know we're not supposed to talk about it as a spectrum anymore, but in my experience it really is - for some it is absolutely a disability, and has had significant impacts on their careers and relationships, but for others it's essentially a personality type that they've been able to build successful lives around.

Personally, I see a lot of autistic traits in myself, but I don't know if I would meet the threshold for autistic, and a diagnosis would be nothing more than "huh, that's that I suppose". I've built up routines and systems that keep me functioning well, and I'm old enough and in a secure enough place that I'm able stick to them (and most people around me have come to accept that that's just me, and that I'm a bit weird about some stuff!)

I actually think you need to consider mostly how you would feel if the assessment came back "neurotypical" when you've been feeling for several years that you're probably not. I might find this really difficult (even though I never ever describe myself as autistic).

UprootedSunflower · 22/02/2025 11:51

I’ve thought about this.

at school and in my younger working life it would have helped me understand myself and have accommodations. Mainly for the anxiety, but also rule bound behaviours and difficulty organising. My daughter was diagnosed at 3, and we are pretty similar. I sometimes don’t know how I made it through primary school, I read at 3 but didn’t talk or interact until 7/8. I guess I was introverted and not a bother, and my work was ahead when I engaged. I also could reproduce from reception detailed 3D images which added to the ‘bright child’ look. Even if I was unable to do basic self care age appropriately.

I’m at the point though now where I’ve battered through the difficult bits. I’m not at school, I’m in a flexible job that fits. I’ve found friends like me, a husband like me and I have kids like me. It’s happy. I’m intelligent and I can mask. I’ve learnt the rules. I’m actually very good at work, due to a memory I can near reproduce things at length and an ability to hyper focus in blocks of time. I work fast. It’s not really people focused in the sense of interaction, I can advise and remember information though for groups and it’s valued for the expertise angle.

one of my biggest barriers is succumbing to a neurotypical label that defines me. Sort of based around how others are impacted my me, or perceive me, rather than my own feelings. For example my internal anxiety and shut down responses has been huge for me, but is rather ignored as it’s not an impact. Also, it’s perceived as a lack of imagination, whereas I get trapped in excessive daydreaming and elaborate ideas to the point I switch off. It just doesn’t define me internally.

i have the accommodations I need, flexible work. I work at night at lot and schedule send emails, no one cares about my odd work pattern.

WiddlinDiddlin · 22/02/2025 13:47

@ToDiagnoseOrNotToDiagnose AuDHD - sorry, yes its the ADHD medication I can't have due to severe heart issues!

ToDiagnoseOrNotToDiagnose · 22/02/2025 14:25

@DeffoNeedANameChange Thanks, that's very useful. I'd be fine if it came back NT - it was never me that thought I might not be, until lots of people around me started saying maybe I was autistic, and then I started looking into it, and then the GP, unprompted, said it, so I started being more - not concerned exactly, but wondering.
Before then, which was about 2 years ago, I just thought I was odd, but it's never bothered me being different, and I found ways of being that work for me, so like you say, to me I just think of it as personality traits and either way would just be "Huh, ok, that's that".

Also thanks @Frowningprovidence & @UprootedSunflower, appreciate your thoughts.

Cheers everyone. Balance of opinion seems to agree that it isn't likely to be helpful in my circumstances, so I'll likely leave it there unless anything changes. Thanks for those who mentioned menopause changes though, will keep an eye out in future for that.

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