Is it worth seeking out a ND diagnosis in older age? Does it make any difference?

[Picklemeyellow]

I am 50 and have struggled with many aspects of my mental health and ‘strange’ behaviours since I was a very small child.

As a primary school aged child I had many ocd’s and odd coping mechanisms. I would (and still do) suffer from extreme anxieties over many things (things which may seem inconsequential to many people).
I was also hyper but in a mental way, no so much physically. So for example, I would talk a lot especially as I was feeling anxious. An example which my parents often talk about is during a 12 hour car journey, whilst my dsis fell asleep as soon as we hit the road, I, on the other hand, talked to them, non stop the whole journey. This would have been because I had travel anxiety (and anxiety about being away from home (which no one really picked up on). I had many anxieties and obsessions which plagued my childhood and my mind.
I couldn’t get to sleep easily (brain wouldn’t shut off, still doesn’t as I have too many tabs open at one time), so my parents gave me Phenergan every night (GP prescribed).

I was a bright child yet never did that well in school (especially secondary) because I’m not great with people and worry about everything and every possible scenario.
I was always described as a shy child but in all honesty I was simply overwhelmed having to be with people for many hours. 1500 pupils at secondary was a nightmare for me and even to date big venues, large cities, even busy shops overwhelm my senses (feels like I’m being bombarded all at once and my brain just simply can not take it all coming at the same time).
I am at my most content either in nature or at home.

I have always said (way before I came across the term masking) that I wear a mask for the outside world. I have never been hyper on the outside but it’s all internal, I internalise my anxieties to the world, so they can not see how much I’m struggling (probably explains why I have had decades of awful gut issues/IBS).
I suppose that have also taught myself how to be like other people. I often think that I am not too sure who the ‘real’ me is or what she is really like because I tend to mould myself to whoever is around me at the time. I am a yes person for fear of showing my true self and no one liking that person.
I have never had the physical obsessions for stuff or items like many ND people (especially children) display but I have a whole host of internalised obsessions which never leave me, they run through my head on a minute to minute timescale. My old (wonderful) family GP once said to me many years ago that it must be exhausting being me and she was bang on.

I have had decades of help for my mental health issues and have always been told it’s just anxiety or generalised anxiety. But I know many with anxiety and they just don’t seem to have this plethora of constant feelings and anxieties that I have. Many have also developed anxiety over adulthood due to various circumstances, they haven’t had this constant since childhood. I almost feel as though, whatever it is, I was born with.
Yet over these decades and seeing many different people involved in mental health (mainly CBT therapists tbh) no one has ever mentioned neuro-diverse issues to me. I am currently under a psychiatrist, he is attached to a neuro-gastroenterology team that I am under for my gut issues.
This year, I had a long consultation with him, explaining literally everything from my childhood and he never mentioned it, just continued with the anxiety diagnosis.
And because of this I have never brought it up with anyone. I feel they wouldn’t take me seriously especially now they have me down as a perimenopausal, 50 year old who has a lifetime diagnosis of ‘just’ anxiety but to me it does feel like much more. I see that it may appear I am trying to dismiss the anxiety diagnosis but it’s simply because it always feels much more than that. I can not fully anti that feeling but it’s always there and also, nothing I try, or have tried in the past has helped lessen the anxiety (I have tried so many things).

I can not afford to see anyone privately and the waiting time (if I could even get my GP to take my seriously) for testing in my area is over 4 years. I know there is the Right to Choose option but again I am scared the GP won’t take me seriously enough to refer me.

Would it even be worth exploring this at my age? Would a diagnosis even make any kind of difference and if they said no you are not ND I think I’d may possibly be left up in the air not fully understanding why I’ve always been this way. Maybe acceptance is a more appropriate route to take? (Although it has all ruined my life so that is easier said than done!)

Has anyone had a ND diagnosis at an older age? Did it make any positive differences to your life?

I was 42. Only even thought about it because my daughter was diagnosed first.
I have found it worth diagnosing because some of the anxiety I was feeling was about never being good enough (for my family, for society etc) and it has enabled me to let go of a lot of that.
[If I had better health and wasn't a carer] a diagnosis would mean I had rights to ask for reasonable adjustments at work.
It also means I've learned to make sure people know I'm listening even if not giving eye contact (or doodling) because it helps me focus better on what they're saying, though I guess you don't need a diagnosis for that.

I'm in a similar situation pickleme, at 47. I first realised earlier this year that I'm almost certainly neurodiverse when my daughter was picked up re ADHD. I haven't sought assessment yet but I will once her assessment is complete. I think it's worth it. I've been advised to research and do online tests - some are better than others - and take results etc along to GP appointment. There's the AQ 50 one, I think that's what it's called.

There's a good Australian podcast you can get on Spotify called The Neurodiverse Woman.

I've read that neurodiverse people tend to accept self-diagnosis because if it resonates that much that you feel it explains so much, then there's a good chance there's something to it.

Good luck. I'm finding self-compassion much easier since I've realised this, I hope you get that lovely silver lining too

I could almost have written your post, OP. I was diagnosed as an adult (40s) after decades of wondering why I found life so difficult. I was also receiving treatment for depression/anxiety/OCD as well as physical issues, but no-one ever thought to explore the connection between these (very common for autistic people, sadly).

I was able to go privately as, like you, I was apprehensive about being dismissed by the GP, but even if that's not possible right now I would absolutely, 100% go for it if I were you - it's the single best thing I've ever done for myself. Do you have a friend/family member who could go to the GP with you and help you push for Right to Choose? Agree with PP that it's useful to do the AQ50 and other tests (see https://embrace-autism.com/autism-tests/) and take these along as evidence. The CAT-Q is especially useful for women as it looks at masking. I also found it very affirming to listen to podcasts, read articles, etc about late-diagnosed autistic women because it helped me feel less alone and less like an imposter.

In practical terms the diagnosis has enabled me to ask for adjustments at work, but more importantly it's allowed me to accept myself as I am, and my MH is better as a result. I now no longer feel guilty/stupid when I approach a task differently from everyone else, because I can confidently say that my brain just works differently, so I'll do it the way I need to.

I believe self-diagnosis can be enough for some people, but I personally felt I needed a professional diagnosis to completely accept myself as autistic. I'm good at masking so was also worried they'd tell me I wasn't autistic at all, but they saw through it all and were in no doubt whatsoever.

Good luck, and remember you're not alone - there are many of us at various stages of this process. Feel free to PM me if it might be helpful!

Thank you everyone, I think that I may try and make an appointment in the new year and discuss it with my GP. I do need to do something as I feel lost tbh.

Diagnosed at 45 here. I went back and forth on it for ages, but there was one massive point that occurred to me which made the decision clear - my grandfather (not ND) was diagnosed with dementia.

There is almost zero knowledge out there about the confluence of autism and dementia, and if it happens to me...I can imagine that my behaviour is going to be different to standard-issue dementia, particularly given my sensory issues. On the basis that I'd be unlikely to be able to advocate for myself should that ever happen to me, I want a formal diagnosis to be able to do it for me.

And, of course, there's the more immediate (but lesser, obviously) benefit that it tends to shut the "Oh, it's just a label, everybody's a bit autistic" crowd up.

ntmdino I have never given that a thought but I should because my mum has Alzheimer’s. That’s given me something to mull over…..

Well, it's not exactly a cheery thought, so I do apologise for putting it in your head. I do think it's worth consideration, though.

Incidentally, I had to go with a private assessment because my GP actively refused me a referral - something along the lines of, "Well, there aren't any support services for adults with autism and you're not seeking a blue badge, so it would be a pointless waste of NHS resources" no matter how hard I pushed or pointed out that it's not for now, but rather the future (since I've noticed that masking is much more exhausting now than it used to be).

50 for asd, 52 for ADHD. Now knocking on 54 and my life has changed immeasurably. No more masking, what you see is what you get. Yes, life is still difficult but things are much, much better.

so sorry you feel lost.

diagnosis brings legal protection. little things can make a big difference. I have a marker on my phone number at the GP to say I am autistic and give me extra time. hospital staff explain things slowly and carefully to account for auditory processing. (typo put autditory , which I thought amusing)

the legal protection is there for when you are old.

I’ve seen it as getting the right ‘users manual’ for my brain. It’s early days for me as I was diagnosed in September, but so far it’s been life a changing and positive experience. I’m working on giving myself the freedom not to keep trying to fix something I now know can’t be fixed (my executive function difficulties), learn how to support myself better (without just trying to be more organised) and be much kinder to myself. Work in progress but feel I’m actually going in the right direction now. I’m 45.

I would say yes, absolutely get a diagnosis as it helped me enormously. Every single thing you have felt and experienced sounds so familiar, it’s almost like your post was written my me 12 years ago! (If you can’t be bothered to read all of my rather long post, skip to the last paragraph for some practical advice!)

I have Tourette’s which was only diagnosed in my 40s although I had suspected for some time that’s what I had as other family members also had tics. Like you, I have always had mental health issues like depression and anxiety and couldn’t work out what had triggered these and why I struggled so much with life in general, when the answer was staring me in the face. It was only when I got diagnosed with Tourette’s that I realised it was the root cause of all my other mental issues (well, that and a passive-aggressive narcissistic mother, but that’s another story…). I had a breakdown about 15 years ago and had to stop working and I now realise that I was just exhausted from years of masking my tics, putting on a happy face and going to work when I felt like I wanted to die, and just generally trying to be “normal”. Finding out what had caused it was a huge relief, and even though I know I can’t help my mental health issues, I used to feel like I should be able to “just pull myself together” and get on with things like everybody else. Now I know it’s all down to an inherited condition, I go easier on myself and feel more able to explain my situation to people.

And from a purely practical point of view, if you ever need support with housing or benefits, a neurological diagnosis will definitely help. I was made homeless right before I had my breakdown and had to claim benefits so it was impossible to find a place to rent privately. With a diagnosis of “depression and anxiety” the local council practically laughed in my face when I applied to go on the housing list but with my Tourette’s diagnosis it was a different story. Same goes for claiming PIP (disability benefits) so I’d recommend getting diagnosed in case, like me, your mental health ever gets so bad you can’t work. diagnose.

Some people worry about a diagnosis being a “label” but to me it was a much-needed explanation and one of the best decisions I ever made.

Speak to your GP about your concerns and ask to be referred to a neurologist. If they are unsympathetic, don’t let that put you off, but try a different GP at your surgery. You can usually look on the surgery’s website to see which individual doctors specialise in which areas, so pick one who has an interest/specialism in mental health. I really hope you can get the help you need xxxx

Hi OP! Just wondering if you've decided whether you're going to explore getting a diagnosis? I am 38 and have also had a host of mental health issues from a young age. Your post really resonates with me (apart from being shy - I am the opposite). In the run up to Christmas, I had another look into how ADHD manifests itself in women and decided it was worth exploring. The GP got me to do a diagnostic questionnaire and write a statement about why I think I have ADHD and how it affects me. I have just been referred under Right to Choose. Just considering that I might be ND, as opposed to a failure, has made it easier to be kind to myself.

Meanwhile, my 5yo son is being assessed for autism. He was observed yesterday and whilst I had been worried they'd laugh in my face as he does not present in the stereotypical way, the psychologist noted several things that align with autism - so don't worry that they'll think you are silly for contemplating. My son's behaviour is identical to mine when I was a kid, so if he is diagnosed, I will also pursue an autism assessment for myself (I did some questionnaires which suggest it's a possibility, similar to the outcomes I got on the various ADHD questionnaires)

I made a new year's resolution (more like a promise to myself) that I would get assessed for neurodiversity. It would explain so much, and hopefully put a stop to my feelings of inadequacy and maybe even give me the energy and courage to jack in teaching and have a career change. Good luck whichever path you choose, may it bring you some much deserved peace xxx

Thanks everyone, your replies have prompted me to do something about this. I have an appointment with a psychiatrist in a few weeks and will ask him for his advice.

OP I see so much of myself in this post. I have recently done an ADOS assessment for autism and I'm waiting for the results.

I feel that if you and I are not autistic, there needs to be a new word for what we are. The anxiety I was born with and the difference in how I process information versus most people is not the same as someone who develops anxiety at some point in their later life (though that's hard, I'm not saying it isn't). It simply doesn't feel like it's qualitatively the same thing as what you and I describe - when I read those accounts I really don't relate.

You’ve explained it so well, that’s exactly it.
My brain most definitely functions differently from other people I know. It is so hard to fully articulate when you’ve felt and functioned a certain way all of your life but I just know that it functions on a different level and I relate to so many autistic traits and to autist people on SM.
I see a psychiatrist under a neuro-gastroenterology team I am under at a London hospital. He agrees with me (after doing the autism and adhd pre tests). He doesn’t specialise in neuro-diverse issues so has referred me for assessment so it’s and wait and see for me 🤞
Good luck with your results FloorWipes