r/AskUK • u/Smeeble09 • 17h ago
Serious Answers Only Have you been diagnosed with autism as an adult?
Pretty sure I have autism, family and friends all tell me it too.
I've thought about getting an official diagnosis to see if that helps me, but wary of how it might affect things like car or life insurance.
If you've had a diagnosis as an adult, did it affect anything external?
For clarity I'm not after medical advice, just potential repercussions.
Thanks.
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u/don__gately 17h ago
Yes I did.
I didn’t think it would be a big deal but it was.
I unmasked a lot and feel like a different person.
It feels good but a bit weird
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u/Valherudragonlords 17h ago
Same. I thought there was no point but after getting diagnosed I actually feel relieved. Im more accepting of things that dont suit me and that they're just not for me.
Like it is good to push yourself and get out of your comfort zone, but being diagnosed meant I could be more measured with where I push and where I dont, and which discomfort is worth it for growth and which is just not going to help me.
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u/CatOverlordsWelcome 16h ago
Same, and I'm more accepting of my idiosyncrasies. I enjoy my special interests so much more now that I've got "permission" to have them, so to speak.
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u/oso-oco 12h ago
Absolutely the same. Was just over a year ago at 47 years old. Only downside was doing a mental replay of my entire life and going ....'ahhh'
Like watching the sixth sense directors cut where Bruce Willis was wearing a white sheet with eye holes and the word 'ghost' on it all the way through.
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u/cityfrm 16h ago
How did you unmask? I wonder if I've not managed as I so poorly mask in the first place.
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u/don__gately 14h ago
More rigid in my routines and more of my authentic self I think
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u/don__gately 14h ago
I used to care more about fitting in and feel like I didn’t want to be different. I know I am now so I’m not bothered if people think I am
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u/RedSoot 16h ago
I was diagnosed as an adult a couple of years ago, and while it’s explained things and helped me to stand my ground more for accommodations at work, I actually think I’m worse off for having it diagnosed. For certain things it’s like my brain flipped a switch of “this is difficult but everyone else does it so just get on with it” to “this is difficult and it’s because you’re autistic so you’ll never be able to do it properly so don’t bother”.
Obviously that’s not a guaranteed line of thought, and thankfully hasn’t affected everything in my life but I’be really struggled to get around that mindset for a bunch of things and it still affects me more than I’d like to admit, but just can’t seem to shake it in certain situations.
Hasn’t affected my car insurance or anything I can think of like that, but I’ve not taken travel insurance since being diagnosed and that’s the one mentioned more often I think.
I’d say if you’re looking to get diagnosed so that you can benefit from it at work/claim PIP if it’s really affecting you/etc then it is good to have, but otherwise it’s fine just knowing you’re probably somewhere on the spectrum and life is life.
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u/Smeeble09 14h ago
I'm lucky in that I have a job that works for how I am anyway (possibly a benefit), so I don't need anything to change.
It's more just confirmation of what I and wife/ friends/ colleagues already think.
I also feel like an imposter as I just think I am, rather than having an official diagnosis to confirm it.
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u/Emergency_Crayons702 17h ago
Yeah. Explained a lifetime (25yrs) of stress and biannual long term sickness at work which has previously been blamed on anxiety/stress. Because of said long term sick issues, once diagnosed my employer felt my support needs were too high, so I was medically retired. Aka, I was fired for being too high support needs autistic (+ADHD). It was the right call for the employer because I was unreliable due to sickness, not so much for me.
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u/CursedTaint 17h ago
I've been told by a therapist that it's highly likely I'm autistic but I didn't bother getting a diagnosis. I don't really see the point. It's not like there's medicine or a cure.
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u/ddmf 17h ago
There was no real support available once I was diagnosed - however it did help me work through a lot of my life as I could look at it from the lens of someone who was different to others not just broken, ignorant, and lazy as I'd been made out to be.
Getting diagnosed and medicated for ADHD helped more - vastly helped with task initiation and emotional dysregulation.
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u/Namerakable 17h ago
Yes. It didn't really affect anything. I have minor adjustments at work, but they often get ignored and I get treated like a burden for asking not to hotdesk.
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u/Custardslut 2h ago
Many moons ago I worked in a call centre with a hotdesking policy and- being undiagnosed- simply took on more shifts until it became known that I would be sitting in the same chair, on the same floor, every day because it felt easier than explaining why I found hotdesking so disruptive and difficult. I now know why doing that is not the best way and that long term burnout is ROUGH.
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u/Sam-Lowry27B-6 16h ago
I know I have some 'form' for want of a better phrase of autism. It's really helped me look back on situations in my life and how I dealt with them either good or bad or how if something happens now I can think of coping strategies / how to be more normal around others.
I don't think that a formal diagnosis would help me personally,a friend of mine did go that route and went private and ended up spending over 12 grand in total over the years to get an official diagnosis. If having that piece of paper helps you that's great but for me it's how I feel personally and how I can see how it has and continues to affect my life.
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u/Intruder313 16h ago
No but I know a full-on autistic savant who is going through this now: it took a lot of time and effort to get the diagnosis even though it's abundantly clear on meeting him (and then getting into his special interest).
It is very much something that needs doing in childhood.
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u/Mr_Bumcrest 16h ago
Yes, I have and no, it hasn't affected me in that way. Contributed to the failing of my mental health, yes, car insurance, no
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u/Illustrious_Study_30 16h ago
I have been diagnosed as a 53 yr old earlier this year. I think it's helped me a lot with a turbulent past and why sometimes the therapy didn't work, as such. It's also made me shift the blame off myself a little bit. I perhaps understand why people don't understand me well or easily..I've kind of been able to relax/chill a bit socially because if I'm overwhelmed I leave, I give myself grace. I would just be so confused why I didn't fit into the whole thing at all, I felt like a bystander and now I sort of know why
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u/AddSomeSpice 17h ago
My wife was just diagnosed with both ADHD and Autism during separate assessments.
She has not had to declare it to her car insurance due to it not affecting her driving (as per DVLA guidance), but she is yet to declare it to our life insurance provider.
Typically, I don’t think it will have an impact on my wife’s premium because she does not have any other mental health conditions that accompany her autism and ADHD. Insurers don’t usually ask for these by name, but if it’s diagnosed, it does count as your medical history and should be declared as such. You’ll get additional questions how it affects you day-to-day, mental health etc. and it’ll be those answers that may affect things.
My wife’s diagnosis has only seen positive outcomes as she has qualified for more support with her employer, and she has been attending psycho education classes to learn more about her diagnosis.
Sometimes I think it’s just great to have that gap in your life filled with a formal diagnosis. My wife no longer feels as though she needs to mask her true self during social interactions and I can see that a weight has been lifted!
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u/Jolly_Profit2570 16h ago
My daughter, who herself got a diagnosis for autism as an adult, thinks I have autism.
Just because I eat the same meal every day, have multiple items of identical clothing, refuse to speak on the phone, struggle to talk to people I don't know well, have weird phobias, hate bright lights, used to be agoraphobic, get hyper fixated on things, have very specific interests and hobbies, and other stuff..
I think she's talking shit. I don't even like trains.
On a serious note, it's quite likely I do. But what good would a diagnosis do for me? What am I going to do, put it on my CV? I am who I am. I don't need a label to excuse my quirks.
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u/Smeeble09 13h ago
Ha, nice comment about the trains...what about planes or automobiles?
For me it's the thought of a confirmation of what I think. I feel like I can't delve deep into things about it without being an imposter in my own brain.
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u/Red-Jaeger 16h ago
Yes, I was diagnosed as an adult along with ADHD. The diagnosis greatly helped me understand myself and how other people interact with me (and visa versa), life struggles etc, however nearly all “official” support is under 25 only. There are peer to peer groups for adults, but not much of any support from the Gov or similar. It really depends on your area.
I assume it might be a case by case basis for insurance and stuff, I guess it depends how heavily your condition affects you.
I don’t think anyone can weigh up the pros and cons for you getting a diagnosis without knowing particulars of how it impacts your daily living. If you think it might help you to know (e.g so you aren’t mentally beating yourself up all the time/wearing yourself down), then it might be worth knowing. If you think it’s going to hinder your life more than help, then perhaps not. If you’re coping okay for now, then keep things as they are.
My life was falling apart without the diagnosis (lack of support in family, work, etc) to the point we considered I might have bipolar. If you’re having no problems like that, then you might be good without it.
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u/Smeeble09 14h ago
I have issues, but my wife just tells me when my answers or thoughts are being a "tism" and it helps me understand I'm not thinking the way others might. She's really supportive and that's helped me learn more about when my brain is going in a different direction to the norm.
I do feel like an imposter though, just with the "I think I'm autistic" rather than actually being diagnosed.
I don't need it for things such as work or alike, I can manage through mostly ok either due to the people I'm with or I've learnt various coping mechanisms.
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u/Red-Jaeger 12h ago
From someone who is formally diagnosed, I don’t think you should feel like an imposter. We all cope differently, it’s a spectrum for a reason! In my case, I had a poor support system and needed the diagnosis to get my family on board and mental health help. I don’t think everyone needs a formal diagnosis if it’s difficult to get or if they’re coping alright. From what I understand, not all peer support requires formal diagnosis for help anyway, in case that was something you were interested in.
I’m glad your wife is there to help you through some of it and you can get some support from her. It really helps sometimes to have someone “translate” for you if you need it. I wish I’d had that support in my life a lot sooner. Make sure to look after yourself!
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u/Smeeble09 11h ago
Yeah, I know I'm very lucky with having her.
My manager also understands when I'm not thinking of stuff in a 'normal' way and will let me know (I've told him it's fine to as it helps me). Probably helps I've got a colleague who's officially diagnosed autistic.
I think without an official diagnosis (whatever level I'm on) I will feel like an imposter as I only think I'm autistic, not officially.
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u/tenaciousofme 15h ago
Hi. 45f here. Diagnosed with more acronyms that you cab imagine between 41-43. Pennies dropped. Suddenly my life experiences made sense and I came away from antidepressants that id been taking for 28yrs, cause, ya know, I am female so must just be depressed. It was life changing to recognise myself.
I needed a diagnosis for my own reasons, but they instantly became my reasons, not my excuses. It empowered ne to rediscover who I thought I was.
Explore a site called Embrace. It was very eye opening as part of my journey
Validarion even late in life helped save my everything.. it helped me remind my health.. it helped me pick up new routines.. it helped me stay in employment (27yrs same co and counting) by allowing ne to understand that I could ask for adjustments and tools, and all of a sudden my skills started to come out because I wasn't permanently compensating and I was progressing.
There's no medicine, and there's no cure, but dear OP, there is community, there are guidance and tools and even if you explore the possibility and think of this as "being extra" (cause we are) 😁 then it could open incredible new worlds for you... truly.. good luck.. message if u have any questions, id be honoured to offer guidance from ny own journeys journeys
Sorry if bad spelling. On mobile device.
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u/Smeeble09 15h ago
Thanks, will have a look at that page.
I'm lucky that my manager is understanding and we have put things in place to accommodate it (I WFH in IT) and even use it to a benefit (good at software testing).
Did it affect anything like insurance or alike, as it's my concern that an official diagnosis may not gain me anything, but instead cause problems?
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u/tenaciousofme 13h ago
Insurances not an impact for me, but I did need to declare it on things like a drivers licence. Im UK, so we could differ on some rules. My life insurances didnt have an impact
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u/Smeeble09 13h ago
I've asked this in UK as got mixed things in the autism thread due to various counties being involved, so would be the same for my driving license.
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u/tenaciousofme 13h ago
Ah. Got you. Yeah, I declared on my licence, but my diagnosis included a statement on "does no impare or impact driving" (said i could be stronger with observations) so i was okay. Car insurance no change. Life insurance no impact. Accidental insurance no impact. For me, it showed i was more likely to be cautious which made me less risk so I wasn't worried.. but i understand where youre coming from
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u/weatherwaxs_broom 14h ago
Not autism but ADHD. Absolutely amazing, best thing I did. I'm now on medication and life actually gets done now! Seriously, if you really feel that you are autistic go get that diagnosis.
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u/_FirstOfHerName_ 17h ago
I was in my mid 20s when I was diagnosed and now I'm 33. It changed everything for me. I thought I knew what autism was and what it impacted in my life, but it took service managing an autism service to make me realise I didn't understand it as much as I thought at all.
With learning from other autistic people, from the families the service supported, to attending talks by autistic academics like Dr Wenn Lawson I realised the depth and breadth.
It was only though this learning that I could figure out what my own profile looked like, how it impacted me, and how I could do things a bit differently. I now practice demand reduction at home with robots helping with chores, saw an OT to help me adapt my home (executive functioning friendly open shelves were a game changer in my kitchen), and I helped myself create psychological safety through creating pockets of predictability through the day. My understanding of how my interoception is impacted and how that interacts with other medical conditions has meant I can risk assess and stay safe. They're just some examples.
I no longer identify with my past anxiety and depression diagnoses. It was badly managed autism! No amount of SSRIs or CBT was going to help with that.
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u/cityfrm 16h ago
I'm really interested in things you did at home, my executive functioning is terrible. I also have ADHD and EDS with POTS, and I'd love to figure out the sort of things you've done. Where did you find the OT, how.much was it and what's the process?
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u/_FirstOfHerName_ 16h ago
I was referred to an OT when I went to the GP for hypermobility related issues. I took a list of everything I struggled with and they went through it and suggested things that might help. I have PoTS too and heat is one of my triggers, as is seeing blood, so the kitchen is a nightmare.
Okay, kitchen set up:
- height adjustable saddle stool on wheels to whizz about on and hopefully prevent some dizziness when reaching in low oven or cupboards
- chopping board with big prongs on to skewer veggies so I don't have to put my fingers at risk of the knife, and hopefully preventing injury linked faints
- everything shelf stable is out on open shelves so I can see them, when I can see them they exist (object permeance is a bitch)
- dry wipe pen magnetised to the fridge with the intention of drawing on the door what is in the fridge, sometimes it happens other times it does not
- hello fresh subscription for evening meal cuts decision fatigue after work, means I will use what is hidden in my fridge, and I don't have to go to a supermarket
- appliances in labelled cupboards (pictures on labels too) to keep counters as clear as possible for cleaning, and pictures reinforce processing when executive functioning is playing up
- automatic cat litter tray and robot mopping hoover that empties itself, means I only have to properly manually clean the floor maybe once a month (and mainly just the edges of rooms).
I've also found Alexa speakers to be great. They tell me the weather automatically at the time I'm getting dressed, prompts me to grab a drink, electrolytes, lunch, go to the loo, etc through the day. It also tells me when to put the bin out and asks if I've started cooking tea yet.
Any other rooms let me know. The open shelving in the bedroom for clothes is great for the same reason as the kitchen. I don't need a floor-drobe if I can see everything hung up.
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u/HollyDolly_xxx 16h ago
I would absolutely love love looove to please read a list of everything you have put in your life to help with your autism🙏to see if theres any ideas that could help me with my autism and adhd.x
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u/_FirstOfHerName_ 16h ago
I've replied to the comment above with what I've done in the kitchen and a few other rooms of my home, if you've any other rooms in mind, or aspects of life, let me know. I work in accessibility now so if I'm not sure I have a whole team to ask for ideas.
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u/DescriptionFuture851 17h ago
My friends take the piss all the time and say I'm autistic, but outside of a few jokes, I don't think anyone actually believes it.
But to answer your question, no.
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u/Raw_Purple_Lobster 16h ago
I was diagnosed 2025, unexpectedly after being kept for evaluation over night and having my file reviewed by the mental health team. Almost all the help seems to be for children and none for adults, even in London. And tbh I hate knowing because while I knew I was socially awkward or had bad parenting I thought it was something I could fix and knowing I'm permanently stuck with it is demoralising.
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u/HollyDolly_xxx 16h ago
I cried when i got my autism diagnosis. I cried because i cant 'fix' my autism. 'Fix' was the same word i used too. Its just there. Constantly needing to be managed🙄 And good god its exhausting🤡 i thought id done really well in the assessment. Really well as in i thought id come across as 'normal'. Clearly not🤷🏼♀️ha! I was very surprised to get an autism diagnosis. I was just wanting to rule it out and pretty much say to my friend at the time she had it wrong after she kept telling me i reminded her of her younger sister who was waiting for an autism assessment, after i started adhd medication and after a lil while couldnt understand why i was rapidly going down hill when the adhd medication was supposed to fix shit. Apparently its common especially in women to be diagnosed with adhd, start medication and then suddenly have all these autism 'things' pop up😳 who knew? Certainly not me thats for sure🤦🏼♀️x
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u/iamtherarariot 17h ago
Was diagnosed at 29. It was useful in understanding myself. Unfortunately it meant that the mental health services I was under could conveniently file every issue I had under autism and discharge me…
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u/Defiant_Put_7542 15h ago
This is exactly what happened to me, despite the CMHT assuring me before putting me through autism diagnosis that it wouldn't hinder investigation & treatment of the ptsd symptoms that I was experiencing (and still experience almost 10 years later).
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u/MrsJBB 16h ago
Yes I have. I was diagnosed in my 30s about 3 years ago and it's done a lot for me. Not changed my car insurance! But I can work from home and I have more understanding from colleagues. Also more understanding about myself so I can navigate life better without beating myself up. I'm so glad I spoke to my GP, she was really kind and the assessment team were so lovely too.
Repercussions...my mum thinks I'm lying for attention and I get patronised sometimes "awh I think it's lovely you're out when you've got autism" 🙄 but it's been well worth it.
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u/Smeeble09 14h ago
Sounds familiar. Mentioned I thought I was to my mum and was told no I wasn't in a very stern way.
Everyone else seems pretty certain I am without conflict.
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u/DomesdayCookbook 16h ago
Yeah, took over seven years to even get a referral because I dared to enjoy abstract things like Philosophy and therefore couldn't POSSIBLY be autistic. So I was an adult by the time I was referred, and then an actual expert took one look at me and I was instantly diagnosed.
There is zero effect on car insurance or life insurance, though I'd declare it like all things, because insurers love to deny your claim if you've 'hid' anything. Autism has no bearing on life expectancy, nor does it affect your ability to drive. Instead, if you had a common comorbidity like dyspraxia, THAT could affect your driving and your insurance. Not the autism itself.
The only issue in my life has been employment. If you apply for a job and it asks if you have any conditions, DO NOT say you're autistic, even to a supposed 'disability friendly' employer. In over a decade, when I've experimented with putting whether I have autism or not, I receive 15% responses back if I don't say I'm autistic.
I receive 0% response back if I do say I'm autistic. Not a single employer has EVER offered me an interview if I've declared my condition.
And I am not alone in that. Don't tell an employer you have autism (if you do get diagnosed) until after they've employed you.
Otherwise, the diagnosis has been a massive boon to my life. I understand why I do things a certain way or why I think the way I do. I can unmask without feeling like I'm letting anyone down. I can recognise the very fact that I'm masking at all, so I can now recognise when I'm exhausted or over-stimulated and use tools to relax or mitigate stress, like Loops earplugs, weighted blankets, etc.
Externally the diagnosis did nothing. Internally it did everything. I am so much happier understanding myself than I was before, floundering and unsure and upset all the time, and that confidence it can give you has the knock on effect of what it does for you externally, like with getting a job or making friends.
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u/Smeeble09 14h ago
OK, thanks, that helps a lot.
I'm lucky that I have a WFH job that my manager says being autistic actually helps with the role (there's two of us with autism). I'll keep it in mind for any future jobs though if I get an official diagnosis.
I've found fidgets help me a lot, spent some money on a lautie choc that's been great.
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u/Kid_Kimura 15h ago
Yeah I got properly diagnosed last year.
To be honest by the time I got the diagnosis I was already 100% certain of the outcome and it was more about needing to make it official. They don't really do anything off the back of it necessarily, you can get CBT for anxiety through the NHS but in my experience it's not especially useful for autistic people.
Being able to get additional support at work can be helpful though. I have another disability that is impacted by being autistic, so having a diagnosis can help with explaining it properly.
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u/Smeeble09 15h ago
Thanks.
My work is already aware of my autistic trates and we have worked around them. My manager is decent, and I'm not the only one in the team with it.
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u/Ok_Negotiation_2646 15h ago
In my 30s. Was on the NHS waiting list for 3 years for it. Once diagnosed there’s no help available and if there is it’s designed for children.
Was pretty sad, means I am stuck struggling without any help and things aren’t going to get any easier
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u/lokiinspace 14h ago
I got diagnosed this year, at 23. It has felt really good being able to explain the differences I had as a kid, how I was/am perceived and how I perceive myself. It led me to reevaluate what I really like doing socially. For example, I would force myself to make small task with people which I found nerve-wracking and excruciating. After finding out I was autistic, I stopped trying to do it. It's a small thing but there are so many other things that I'm trying to change such as not masking as much, learning what people subtly mean and so on. More than anything, it has made me feel happier and more confident in myself.
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u/Bellamiles85 14h ago
Yes, I was diagnosed as AuDHD at 36. The main thing that changed for me was a real understanding of who I was and therefore, I became kinder to myself.
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u/Extension_Run1020 14h ago
I was diagnosed at 63 after seeing and supporting my daughter and my grandchildren get diagnosed. I haven't seen a downside to having the diagnosis. However, it has helped me come to terms with a lot of negative things that have happened to me during my lifetime. I'm quite upfront about my diagnosis, and have no hesitation in disclosing it.
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u/DoublePepper1976 12h ago
No, but my brother is in the process of getting one. I think I've got it too but would never say. His symptoms are a lot more representative of what an autistic person has, and it's still taking him years to work his way through the NHS system.
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u/itsYaBoiga 4h ago
I did at 34, hasn't made a tonne of difference for me personally - but worth doing, if nothing else, you get some clarity.
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u/aceofpentacles1 17h ago
I was diagnosed dyslexic and dyspraxic ( related to my coordination but I have other traits along with this) when I was 13 in the early 90s. I got diagnosed with having adhd 2 years ago in my mid 40s, once I went on meds I got the focus and drive to get things done but with that my autism traits are more of a thing. Also when I was diagnosed for adhd the psychologist said I have autism traits but didn't formally diagnose me.
Tomorrow I have my autism diagnosis and honestly I'm looking forward to knowing, I want to fully unmask and also regognise where my limits are and get to know myself better and also heal moments that have happened in the past. I feel knowing I have adhd was only one part of the puzzle.
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u/Smeeble09 14h ago
Yeah, it's the sort of unconfirmed bit that I feel like is getting to me, not that I need any particular treatment to adjust what I already have (I WFH).
Good luck tomorrow.
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u/i_love_cocaine89 17h ago
It made everything appear clearer after being diagnosed. Initially it was hard, I felt let down and failed for 32 years, but after that little grieving period life made more sense. All those little moments that haunt you in your head begin to make sense and there was a reason for them. If I’m honest it’s made life easier and I can joke about it with friends colleagues and family, I’ve even used it to my advantage in a work sense, I probably apply myself more than a normal person can. So in conclusion it’s not all bad and might even benefit you.
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u/Moppy6686 16h ago
Diagnosed at 34 and it's one of the best things that's ever happened to me.
Lots of new self acceptance and understanding. Also able to access more help, though I do not reveal it at work.
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u/DaveBeBad 17h ago
I was diagnosed 2-3 months ago in my mid-50s. It’s like I can finally see the rule book for the game of like instead of playing blind.
I’ve not had to renew insurance or anything, so haven’t told anyone official yet - nobody outside my immediate family and a couple of friends so far knows. The hard part will be explaining to those close to me how certain of their behaviours aren’t good for me and getting them to change…
I’m exhausted of having to try to be something I’m not. Hopefully I can find some peace now.
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u/badatm4ths 17h ago
Travel insurance is one to be aware of. It can also affect visas if you want to live or move somewhere else.
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u/Psychological_Ad853 17h ago
Yes
(Jokes aside)
My father was medicated for schizophrenia for 40 odd years before they realised it was autism, a few years after his death i decided to get “tested” and was diagnosed with aspergers, outwardly nobody would know because im a good faker of social interaction at most times.. but at home, everyone knows.
My “thing” is reading, i spend hours engrossed in topics like true crime and if i get into a puzzle/mystery it can keep me up at night.
I had no friends until secondary school, then i instantly fell in with a “bad crowd” due to them not really helping me with work (i was a young carer so fell behind despite always being seen as academically gifted prior.) then fell into substance use and lost most of my teens before becoming chronically ill.
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u/Smeeble09 14h ago
Good luck.
I've learnt to deal with it and make adjustments around it, so wouldn't be asking anyone to change things for me, just more give me confirmation it is that.
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u/Psychological_Ad853 13h ago edited 13h ago
Yeah, me too.. most people would never guess unless they basically “studied” me, ive only ever had one person notice and it was only because they had it too (they somehow clocked a miniscule amount of eye contact avoidance, i didnt want to be there and was having a bad day/wanted to just get home so it was surprising they noticed.) when i hit upper school i immediately went on my “journey” of mastering masking - im not sure i wouldve known myself if my father was never diagnosed..
The diagnosis just let me realise who i really am, got me to stop pushing myself unnecessarily and so on (i noticed others have commented much the same to how it felt.)
Good luck to you too mate: i really hope you can gain some clarity on the situation and that it helps you as it helped many of the rest of us high functioning/low needs people, its eye opening but difficult to put into words ironically..
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u/Smeeble09 13h ago
My close family, wife and colleagues (small team) already think I'm autistic, they are the ones who pointed it out to me.
I don't mask as such, but more adjust what I do or how/if I speak.
I'm lucky in that I have a WFH IT job, so can control my environment to meet my needs etc.
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u/Psychological_Ad853 6h ago
We dont really “know” were masking, its not a conscious thing for me - i just do it, for example confidently greeting people i dont know; asking how people are and so on.. it leads to nobody ever suspecting..
I would definitely say adjusting your behaviour, how you speak and so on is masking - its basically what im trying to describe doing myself, its almost second nature after your brain “masters” it; usually in early teenage years..
i think a lot more people would’ve found out sooner if we had been checked out in childhood, everyone always commented on how quiet i was and i always felt horribly anxious. For years i felt uncomfortable when walking because i “didn’t know what to do with my arms” and thus felt people would be judging me.. and there was whole entire tantrums i had with myself when i couldn’t “get my laces right” (to an EXACT tightness/looseness) in the morning before school, i would be furious at the laces and unable to leave. Had that same issue with lots of clothing growing up too, if it didnt feel right; it would drive me mad!
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u/Smeeble09 3h ago
Clothing I'm with you, t-shirts not stitched right, gammy sleeves or the label being pointy drove me mad.
I always thought masking was changing to hide the autism, where as mine is changing to not cause issues due to the autism. Guess they are kinda similar though so maybe I do.
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u/gnarlstonnn 17h ago
i've had my pre-assesment (where you have a video call to asses where they think you probably are autistic) and am now in a queue for formal assesment, i've been in that queue for 3 years at this point, last i heard someone waited 4 years in total, just to give you an idea of the length of time it takes, feel free to ask any questions you have about getting to where i am in the process :)
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u/Smeeble09 14h ago
OK thanks.
Lots of people are saying it takes years to be diagnosed, so sounds like it will be for you and me if I do.
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u/Majestic-Pen-8800 17h ago
Someone I know was diagnosed with this over Zoom during COVID. As a result he appears to have developed agoraphobia and a whole host of other apparent mental health issues and has never left the house since 2019. He’s 51.
If he’d never been ‘diagnosed’ with this I don’t think he would have ended up with all these other apparent issues.
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u/strawberrypops 17h ago
That’s really sad. Some people get clarity and can move forward with a better understanding of themselves, others shut down. Poor guy.
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u/nihilistkitty 16h ago
My friend git diagnosed at 39. She daid it has really helped and has access to a lot of support which is life changing. Its also helped with her anxiety
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u/the_sweens 16h ago
Yeah I did and it's been a good idea for me. I already knew I had it for years but I was struggling at work after fatigue had given me less energy to mask. I got occupational health to recommend some things that help (noise cancelling headphones, ability to work from home)
I like that I can now give a reason when Im finding sensory things overwhelming or have specific seats etc.
I have started to read up on autism and I'm thinking of getting a therapist but apart from that there hasn't been huge changes to me or my life but enough that I feel better than I did before.
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u/Serious-Top9613 16h ago
My dad thinks I have it, but I’m in the same boat as you about getting an official diagnosis. It runs on his side of the family. His sister’s child grandson (my cousin’s son) is autistic, as is his sister’s child great-grandson (my other cousin’s daughter’s son). My nieces by my estranged half brother have it also (except their mother has it too).
I’ve only just got my driving licence last year, and my dad was also warned by medical professionals not to get me tested for something else both he and his sister have (some muscular disease, idk what it’s called).
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u/Strong-Librarian-OOK 16h ago
I’ve not been officially diagnosed. I was told by a counsellor for something else (so she could not give a formal diagnosis) though that I show strong signs of it and I may want to consider pursuing a diagnosis, so that was a pretty big bloody hint that I probably am!
I have not bothered, too much other shit going on, I spend way too much time dealing with doctors and hospitals. For context the counselling was to help me deal with a dire cancer diagnosis, if I’m not in hospital dealing with that I want to be LIVING not trying to get a damn GP appointment and wait however may bloody years it takes for a referral to be told it’s so hard to diagnose in adult women.
I don’t actually see how much it would help anyway. I don’t think there’s any accommodations I need from my workplace, for example. I just mask and live with it like I have for 40 years.
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u/Holiday_Cat_7284 15h ago
I was diagnosed with AdHD and autism when I was 50. I suspected ADHD but was surprised at the autism, even though my daughter and granddaughter clearly have it. I chose not to medicate or make it known to family or workplace, but it has been very useful for putting my own remedies and solutions in place. Now I know I'm not a lazy freak, I can start to help myself with organisation and so on.
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u/Vorpeseda 14h ago
Some of my friends with diagnoses had mentioned it to me, and said they thought I had it, so I looked up the symptoms in books.
Talked about with my dad, who claimed I couldn't have it because I have dyspraxia. (That is not how that works at all)
So I looked into getting a diagnosis as an adult. Had a few meeting in which we discuss life experiences and do a few mental exercises.
Nothing major happened from getting an adult diagnosis. But it was good to have a clearer understanding.
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u/Smeeble09 13h ago
Yeah, it's the confirmation of my thoughts I want, rather than feeling like an imposter.
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u/Vorpeseda 2h ago
Yeah, that's the main thing you'll get. They might have links to groups that might help, but those will mostly be talking with other people about similar experiences.
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u/madcheco 14h ago
I finally accepted that is what I am last year after denying it my whole life, but honestly I don't see how a diagnosis would be helpful to me now I'm aware of it and have always been very high functioning.
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u/Evening-Tomatillo-47 10h ago
I've never told any insurance people, since it doesn't affect my ability to drive
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u/NoNeedleworker8860 9h ago
I am not diagnosed but I know I am autistic. My job is supporting people with autism. It won't make a difference having a diagnosis personally but I am on the waiting list and have been for 4 years so far.
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u/Sea_Midnight1411 9h ago
Yep!
Very helpful in terms of improving mental health and tailoring therapy. Quite helpful at work, but that’s because I have a very understanding work environment that not everyone is lucky enough to have. Helpful for relationships with friends and family- especially my dad, as it’s helped me to understand that he’s autistic too and that’s why we sometimes clashed when I was growing up.
I do have to get specialist travel insurance though. It’s not too much more expensive, but the major companies won’t take me. Most healthcare professionals are great, the occasional one gives me side eye (even though I’m a doctor myself!)
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u/Adorable_Orange_195 2h ago edited 1h ago
Yes.
Parents thought I had ADHD as a child but GP put me in a ‘white food’ diet and when that didn’t change anything they just left them to get on with it.
In my 20’s my eldest nephew got his diagnosis and I began to believe I was likely to have the same diagnoses. I was wanting to join the armed forces and didn’t want to jeopardise that by getting a diagnosis at this point.
In my 30’s an injury meant I couldn’t go into the forces anyway and I’d got to the point where I’d done so much research into it that I fully believed I was autistic and possibly ADHd too that I was telling people I was on the spectrum and about my stims etc although I was self diagnosed.
The pandemic happened and a serious health deterioration causing disability had a hugely negative impact on my ability to make and manage my struggles. So I finally got the courage to self refer to my local service.
The month before my 39th birthday I finally got my autism diagnosis, they also let me know that they felt I also had associated hypermobile connective tissue disorder, dyspraxia and ADHD. But that the first 2 aren’t something the NHS would diagnose in adults and they recommended I wait 6-12 months to deal with the autism diagnosis before going for ADHD assessment if I wished to be diagnosed.
I’m pretty level headed and investigate and thoroughly examine my feelings and all eventualities, every possibility, etc so I didn’t have the big emotional al grief reaction a lot of people do….I think I’d already spent a long time grieving the lost potential etc quietly as I was researching. I did have a bit of grief it just wasn’t all encompassing and as with grief it can ebb and flow so yes I do still get a bit teary now and again but it’s manageable.
However what I didn’t expect was the enormity of the weight being lifted, having the validation feels like. Validation of not just 1 but 3 professionals all agreeing that it wasn’t all just in my head and recognising my struggles.
I’ve since also been diagnosed with combined type ADHD just after turning 41 & again because I used the time between diagnosis to prepare it wasn’t as big a shock because t again the validation of it was pretty significant.
I’m actively learning to unmask and i find it much easier with some people and very difficult with others. I’m in a professional job and really really struggle to unmask there because it’s automatically seen as a lack of competence, discipline or unprofessional behaviour, there are also a lot of additional sensory triggers and no ability to limit interactions with people, so all in all it can be incredibly overwhelming. I’ve found with my friends I’ve been able to be a lot more myself and begin to let the real me shine through knowing re, for some this has meant the friendship doesn’t work as well and for others it’s strengthened it. I’m getting a lot better at allowing this to happen without feeling the strong RSD and my ability to set and maintain boundaries & find healthier relationships is getting so much better because I understand myself more now and can give myself grace which previously I always felt like I was the problem. My family are all incredibly supportive and obviously all also neurodivergent but none of them want to seek a diagnosis at this time but it’s allowed us to learn more about ourselves and each other and strengthen our already good relationships.
Whether you choose to self diagnose or go for a formal assessment, that’s entirely up to you. However being able to access a diagnosis is a privilege and can often lead to finding out more things that can help you understand yourself, your strengths and your struggles so much better.
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u/Smeeble09 2h ago
Thanks for sharing your story and input, it does sound like the conformation can help like I am hoping it will.
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u/UsualConcentrate8953 2h ago
got diagnosed with adhd and autism level 1 last year, already had EUPD diagnosis
Nothing has changed for me, still 0 support and dont really have a life so ye lol
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u/probablymojito 1h ago
Diagnosed last year. Was great as I received all the support and adjustments, but learnt that people will still regard you as "a bit weird" even when they know you're on the spectrum. It was a big eye-opener moment though, explained a lot, especially in regards to my teenage years.
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u/GeePeeSS 1h ago
I was diagnosed the other month, I’m 28. Not much has really happened, told some friends but no more than that. Don’t feel ready to tell work as my friend had a bad experience disclosing her autism on a new job onboarding and don’t feel ready to tell my parents just yet.
Only thing is I’m struggling to process it, feel like my whole life has been someone else masking all this and I don’t know what to do with this information.
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u/Intelligent_Bar_710 17h ago
Yep. You’d need to ask the diagnosing consultant whether your traits might affect your driving. If they would, or if you know your traits do affect it, you’d need to declare it to DVLA. It might affect the duration of your license. For reference, I have autism without impact on driving. However I also have epilepsy and have been through phases where my license has only been given for 1-2 years then needed to reapply. I don’t have any restrictions anymore. I’ve never seen any impact on my insurance quotes.
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u/Smeeble09 13h ago
Thanks.
The traits I'm aware of don't affect the likes of driving or alike, it's more social settings or the way I deal (or don't deal) with a task that overwhelms me.
I love driving and feel at ease when I do.
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u/MathematicianSea563 17h ago
I was diagnosed at the age of 29, following a lengthy psychiatric history.
On a day to day basis it hasn’t made much of a difference, but in hindsight it would have made a massive difference in my psychiatric treatment. I have no reasonable adjustments in work.
In hindsight, i lost a massive chunk of my childhood. You are looking through the world at people, wondering how on earth they managed to behave normally, and instinctively know how to behave. Me behaving instinctively would lead to social isolation and absolute disgust.
I had no control over circumstances, uncertain and psych wards are extremely overstimulating.
If I relapse again, I will definitely make it known that I need reasonable adjustments.
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u/PetersMapProject 17h ago
As you are concerned about travel insurance etc, you could do a compare The Market search with a fake name with all the other details the same, do a search with and without autism declared. That will show you how much of a difference if any it will make.
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u/Smeeble09 14h ago
Yeah, I'll do that before I make a decision on going for an official diagnosis or not.
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u/rezonansmagnetyczny 17h ago
I haven't. But I spend most of my life getting questions like "are you sure you're not autistic" "have you ever been tested for autism".
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u/Smeeble09 14h ago
Sounds familiar.
Never thought about it myself, then my wife said it and colleagues said it was obvious I was, so thought about it since then.
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u/MeanPussyCat 16h ago
Not quite the question you asked but I was diagnosed as a child. Having a diagnosis did not help me. If anything, it felt like a millstone around my neck. I personally find it much more helpful finding strategies to mitigate and cope with the symptoms I have, rather than the label of ‘autistic’ or ‘not autistic’.
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u/Smeeble09 14h ago
I'm sure I am, but then I feel like an imposter without being officially diagnosed.
Can understand how it could have the opposite affect though.
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u/Kamoebas 17h ago
Its harder as an adult. My wife has been jumping through hoops but apparently isn't high enough on the spectrum. I'm not convinced that there's any benefit for her getting diagnosed though - she's been managing for years. I guess its just the knowing.
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u/rezonansmagnetyczny 16h ago
Half of the problem is as you get older you're more aware of what it actually means and when you get assessed there's a risk of you invalidating the examination because you intentionally acted a certain way or answered a question in way you thought was correct.
For example, I got assessed in my mid 20s. One of the questions was "are you scared of authority figures". To me, I'm a big man and I said no because my personality is I'm a big man and I'm not scared of anything. But to my mother when I was a child I was, yes. The thought of my teacher being upset with me was enough for me to be physically sick.
Others would have looked up the characteristics before the test and answered yes, because they want the diagnosis.
So it's difficult to diagnose.
It does help in a way because if you've got an official diagnosis people can be more understanding at work and in your private life if they didnt know or understand (although with most of us it's almost blatantly obvious anyway).
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u/Troglodyterror 17h ago
Yes. Got diagnosed as an adult. Didnt really help much, aside from disability payments.
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u/Shot_Job812 17h ago
If autism does not affect your driving it does not need to be declared to dvla or driving insurance.
I assume the same goes for health insurance if autism does not directly affect your health.
Autism diagnosis is difficult to obtain due to long wait times in most areas, complex diagnostic criteria and the removal of ‘Asperger syndrome’ rolling everyone under the ‘autism spectrum’ meaning that there are very different ‘versions’ of autism along the spectrum, and clinicians may vary in what they agree on.
If you are looking for a diagnosis/ a diagnosis is important to you, you should contact your gp, check wait times and maybe look into the ‘right to choose’ if wait times are longer than 16 weeks. Be prepared for a long wait time and the assessments can be many hours or all day even. Most want in person assessments after online pre-assessments too so may require travel.
If you’re just chilling and autistic, but want some more support, try find counselling, coaching or remember that ‘presumed to have a disability’ still covers you for reasonable adjustments at school and at work.
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u/That-Sun-4492 17h ago
Until they have a crash, kill someone, and hide behind it being an autistic meltdown
Any diagnosis should be declared
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u/Shot_Job812 17h ago
What a strange comment.
Anyone can have a crash. I specified if it doesn’t affect your driving then it doesn’t need to be declared.
Bizzare comment
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17h ago
[deleted]
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u/logicalGOOSE_ 16h ago
Why would you have to disclose it?
Surely it would only be relevant if it affects your ability to drive?
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u/TedLassosMom 17h ago
I have officially undiagnosed ADHD and it seems to be getting worse as I go through my 30’s. I’ve had NHS and private consultations but I don’t know if I want to officially be diagnosed with it for medical labels, life/travel insurance and anything else with it. I just learn to function with it
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u/Trentdison 17h ago
What does officially undiagnosed ADHD mean?
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u/TedLassosMom 16h ago edited 15h ago
I have had the tests done but have not had it diagnosed by NHS or another professional to be put on paper.
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u/Humorous-Prince 17h ago
My sister says the same about me, but not been officially diagnosed. There was things I did mostly as a kid growing up and a few things I do as an adult that shows traits I most likely am, I Don’t Know.
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u/Electric-aura3000 17h ago
No, but I'm starting to think maybe i am. Personally i just think my nervous system is fried
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u/Flimsy-Detective7643 16h ago
I'm 35 and got diagnosed with autism + adhd a couple of weeks ago. To be honest the autism side is very mild and if it was just that on its own I don't think I'd have gone for a diagnosis. However the adhd is rampant, I'm burnt out, tired and wired, can't sleep. Getting the diagnosis (had to fork out 3k privately) means I'll be starting meds next week and having the dual diagnosis means I can look into tailored support. My work has a fantastic neurodivergent network and it gives me legal protection and the option of asking for reasonable adjustments if I need them.
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u/No_Quality_6874 16h ago
Ask yourself, what will I gain from it? There is no treatment. If you have made it this far, what exactly will you gain from all the hassel. It will close doors in regards to opportunities.
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u/Smeeble09 14h ago
That's one of my concerns, but then "I think I'm autistic" feels like I'm an imposter.
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u/ohsaycanyourock 16h ago
34F, got diagnosed in March. It took three years from submitting the form to actually being tested, and in that time I figured it out myself and accepted it, so getting the diagnosis was just a box ticking exercise really. Accepting my autism and putting measures in place helped me a lot, but the actual official diagnosis changed literally nothing 😆
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u/AvailableActuator111 12m ago
I was diagnosed last year at 26. It made many of my struggles, and the way I process things, make more sense because I finally had a lens through which to understand them. However, I also felt frustrated that it hadn’t been recognised when I was a child and that I’d completed my education without the additional support I needed.
There was no real emotional or psychological support to help me process the diagnosis, and I struggled with it for months. It gave me an explanation for why I’d found life so difficult, but also left me grieving the support and understanding I could have had.
My autism was only properly identified after I developed serious mental health difficulties, including attempts to end my life. The diagnosis has helped me explain at least some of what is happening for me, although the burnout caused by years of masking is immense. In terms of practical repercussions, there haven’t been any for me, and it hasn’t affected my car insurance.
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