Not to pursue an ASD diagnosis as an adult

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

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.

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).

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.

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.

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

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)

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

@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. 🌷

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).

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.

This!

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

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

@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.

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.

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

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.

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.

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.

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.

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.

Or high functioning autism