Late-diagnosed autistic women – did you recognise yourself in things like this?

[QuietlyQurious]

I originally posted this in Neurodiverse Mumsnetters, but it seems to be a very quiet board, so I hope it’s OK to ask here too. I’m particularly hoping to hear from autistic women, especially those who were diagnosed or assessed as adults.

I’m in my 30s and recently had a private ADHD screening, where I was told ADHD is quite likely. Since then I’ve started wondering whether autism might also explain some lifelong things that I’d previously assumed were just introversion, or perhaps social anxiety.

One of the biggest things for me is unfamiliar situations. I often avoid new community centres, independent cafés, libraries, self-service coffee machines etc because I genuinely can’t work out how the “system” works — where to go, what to do, what order things happen in. Once I know how it works, I’m usually fine.

If I know I’m going somewhere unfamiliar, I research it beforehand — photos, layout, where to order, toilet location, etc. I can usually manage the actual event, but afterwards I feel mentally exhausted. I often feel as though I need a couple of weeks before I have the energy to socialise again.

I also get very absorbed in interests. If I decide to do something, I tend to need to understand everything about it. For example, wanting a bee hotel turned into researching solitary bee species, hole diameters, orientation and materials rather than simply buying one.

Socially, I’m quite chatty one-to-one (possibly because of ADHD), but in groups of three or more I often struggle to work out when to speak and end up mostly smiling and listening.

This has become more noticeable since having my daughter, because I now need to take her to unfamiliar activities and places, and sometimes I avoid them because the uncertainty feels overwhelming.

I’ve tried several autism screening questionnaires and scored above the suggested thresholds on most of them (AQ-50 32, RAADS-R 83, CAT-Q 116 and GQ-ASC 58), although my AQ-10 was only 5, which has made me unsure what to make of it.

I’m absolutely not asking anyone here to diagnose me. I’m just really interested in hearing from women who were diagnosed or assessed as adults: did any of this sound familiar to you? What were the things that eventually made you realise autism might be worth exploring?

I dont have any diagnosis. My daughter has an adhd diagnosis and is awaiting asd. My sister is on a waitlist for asd.my ex has adhd and waitlist for asd.

as part of going through the process with my daughter I identified a lot of things about myself. Someone at work when I mentioned it (has asd children and probably is himself) went of course you are.

Interestingly the one new person at work I clicked with I would swear would also probably be diagnosed.
i also struggle - feel like I am on the edge of things, overshare and over explain and then wonder why.

i don’t ‘get’ the whole networking thing.

I also put stuff in boxes, I feel like I just shut away feelings - even close family bereavements just get put in a box.

Although I don’t think I would ever pursue a diagnosis I have started some neurodiversity leadership coaching to try and help me manage some of the challenges I have at work.

@JulietteHasAGun @Ilovefruitpastilles

A lot of what both of you have said sounds really familiar to me, especially checking unfamiliar places beforehand, new gadgets/systems and going down rabbit holes.

I also relate to feeling a bit separate from other people socially — not quite “not a proper human being”, but more like I don’t naturally blend into groups in the same way other people seem to.

It’s really helpful hearing other people describe similar experiences.

I used to think noise sensitivity in autism had to be really intense, like needing to wear headphones or ear defenders, but I’m starting to realise that mine probably counts to some degree too 🤔

I also relate to feeling a bit separate from other people socially — not quite “not a proper human being”, but more like I don’t naturally blend into groups in the same way other people seem to.

It's so hard to compare oneself to others, as many many people who appear to blend into groups actually go home with these thoughts in their heads too!

Sounds a lot like me. ADHD very late diagnosis (60). But in my case I have found that being older gives me licence to be a bit dotty and also to ask for help (and get it). Whereas someone younger might be brushed off with 'work it out yourself', when you get to the age where you might conceivably need help even if NT, I no longer fear being in unfamiliar surroundings or circumstances, because a request for someone to help me, or show me what to do, is met with a lot more tolerance.

I’m autistic and you have just explained to me what I didn’t know about going to new places. It’s the system that worries me! I had no idea why I struggle so much but it’s 100% not knowing what to do. I research everything in such detail before going too, the internet is an amazing tool for this! I have a diagnosis of both Autism and ADHD, I also think I have OCD but cannot get anywhere with that u less I go private which is not affordable or even something I would know how to do.

What I have learned is that that obsession with analysis of every behaviour does eventually lessen. For a few years I was overthinking every single aspect of my day ‘is this ASD or ADHD?’ when actually now I know I have these conditions I just need to focus on managing them to make my life easier. It’s a long process but once you know for sure the reason it makes it far easier to stop dissecting your every move.

You could have described me. It’s become more pronounced as I’ve gotten older. Two autistic children, autistic 1st cousin, it’s been suggested by others that I might be. Always had to recharge on ‘busy’ days or nights out etc etc Had children and my coping strategies that I’d previously developed fell apart - it’s almost as if I had to figure out all of life and living all over again.

@thestraycathouse
The neurodiversity leadership coaching sounds interesting. I’ve actually been debating whether to pursue a formal diagnosis or not. Part of me thinks I could just focus on finding coping strategies or perhaps try some neurodiversity-informed therapy, but another part of me wants some kind of confirmation from a specialist so I'm not making the wrong assumption about my struggles, if that makes sense 😅

@concertinacornflake
That’s a fair point. I suppose it’s very hard to know what other people are actually feeling internally, even if they look like they’re fitting in easily from the outside

I was diagnosed ADHD in the 90s and now in my 40s waiting for an ASD assessment, even my family say ADHD isn’t the full picture.

I only realised I might be ASD when my child was diagnosed and the book I was advised to read basically described me 😂

But yes, I plan everything in advance so I know what to do.

Is it possible that these things are a way of dealing with low executive function? I have ADHD and I do have to research things before I do them-not because of autistic traits but because I’m not confident I’ll be able to stay on task and focus on the right things once I’m in that situation. I try to focus on so many things at once that it becomes overwhelming, so preparation resolves this a bit by eliminating the unknown.

I can’t enjoy team sports because I try to watch everyone on a pitch at the same time and end up not having a clue what’s going on and it’s similar in other busy situations, so prep is essential.

The deep diving could be explained by ADHD-there is a tendency to hyperfocus on something and then drop it, that’s probably one of its defining features.

I wouldn’t rush to assume any of this is autism unless there are other factors that align with it too that’s you’ve not mentioned here.

That makes a lot of sense. I think I’m slightly earlier in the process than that — I already feel fairly convinced that ADHD is part of the picture, but until this thread I genuinely wasn’t sure whether autism was a realistic possibility for me as well.

A lot of the things I struggle with didn’t look like the more obvious autism traits I’d heard about, so I’d always assumed they were just me being bad at certain things, or perhaps social anxiety. The unfamiliar-place/system issue is probably the biggest example of that.

Hearing from several people here who are diagnosed with autism or AuDHD and who describe that same “I don’t know how this place/thing works” feeling has made me think it probably is worth exploring the autism side properly rather than dismissing it.

This is so interesting to read. My DC has been diagnosed autistic (I think AUDHD) and my mum and brother are almost certainly autistic. I've wondered about myself and so many of the traits described here are me to a tee. I only really connect with other ND people and so I've stopped beating myself up about not fitting in.

The one thing that's different is that once I'm shown a system I learn really quickly.

I probably do have some ADHD traits but won't pursue any diagnoses as I have arranged my life to suit me, e.g. I work term time only to give me enough down time, I only put effort into friendships with people I gravitate towards and activities I can manage. I research everything when going to a new place, thank goodness for Google maps and street view!

One thing I would say is for me, going through the perimenopause was extremely difficult and all my traits were magnified, I struggled loads more with executive functioning, it really was an awful time. Hrt helped a lot but it did bring home my limitations.

I also really identify with being outside of a group, not feeling integrated into it.

I like travel and have to do it a reasonable amount for work. But airports have a beautiful system: check in, security, find your gate, board. I will also do loads of homework beforehand, which I just put down to good research/being interested and it took my husband pointing out that no, it’s not usual to have the list of every meal and the associated restaurants planned out beforehand after having been through all the trip advisor photos.

I got 118 on the RAADs questionnaire but needed scaffolding. It was questions like the one about obsessive about trains (I’m paraphrasing) and I said that question has no relevance to me whatsoever because I don’t care about trains, and the person doing the test had to say, if you swap out trains for calories (I’ve written down everything I’ve eaten for years, and know calorie contents almost by rote) and number plates (I’m very good at remembering car number plates), it’s entirely me. But I failed to recognise it because I got hooked on the “trains” bit, if that makes sense?

I get really caught up in “this is how you are supposed to behave” when it runs up against “but I don’t want to do it” - I have a PDA diagnosis as well. My systems part is saying e.g. “families hang out and watch tv together, therefore sit here and do this activity” and another part of me is screaming that doing this is absolute torture, and the wheels come off. I’ve been lucky in that for my life there has been good overlap between “this is how you are supposed to do things” and the things I can do, to be honest.

I also use lots of fairly hardcore exercise, hot baths and electronic music to regulate- it keeps enough parts of my brain occupied to allow functional bits to function if that makes sense?

I'm not officially diagnosed, but over the years, a couple of mental health workers have done some initial screening tests with me and the results indicated I'm likely to be. I've been diagnosed with GAD and agoraphobia in the past, but I think these are primarily a symptom of being autistic.

I definitely relate to the unfamiliar situations struggles. I avoid doing new things by default, then realise I've basically become a recluse and my world has become so small, that I need to actively plan and force myself to try new things and go to new places. I don't understand people who can just go out and do day trips most weekends like it's nothing. If I'm doing a couple of activities a year then that's pretty good going for me.

Driving is a huge stumbling block for me. I got my license 9 years ago, but found the fear of getting into a situation I'm not expecting has stopped me from actually driving. It's completely illogical as people around me tell me I drive safely. People tell me the more I do it the easier it will get, but I don't think they understand I'm constantly operating on being slightly overwhelmed at best by just being outside my house!

That’s a really useful point, and I have wondered how much of this could be ADHD/executive function rather than autism.

I think the part I’m still trying to understand is that, for me, it often isn’t mainly about staying focused once I’m there. It’s more that I genuinely don’t know what I’m supposed to do or how the system works — where to go, what order things happen in, whether to sit down or pay first, what something is for, etc. Once I’ve seen someone do it or I know the routine, I’m usually much more comfortable.

I completely agree about the deep-diving though — I’d always assumed that part was probably ADHD hyperfocus. But then I also have some very intense, specific interests that have been consistent since childhood, which makes me wonder whether there might be an autistic element to that as well 🤔

There are other things that have made me wonder about autism too, but I definitely don’t want to assume that every trait has to be autism just because it overlaps.

I find it interesting that you view this as an 'autistic' tendency as i read what you put and thought surely most of that is being practical and organised? Its so easy to do now with the internet i think it's completely normal to look up a venue online before you go, check what the parking situation is, have a look at the menu, have a look at their insta to see what the vibe is?

You've made it sound like anxious behaviour, i dont see it that way at all.

These days we are all on our phones all the time, its so easy to do. I personally enjoy something more when i know a bit more about it beforehand, whats wrong with that?

I relate to pretty much all of what you've said, OP. However, I am not autistic; but I have always struggled with anxiety. It runs in my family.

On your point about 'systems' in various settings - I always end up feeling pissed off that we're somehow meant to psychically know how things work!! I never understand why the rules/procedures etc are not clearly laid out somewhere.

It's weird. I'm actually very outgoing and love visiting new places, trying new things, meeting new people etc. But at the same time, it's like I exist in some kind of glass box where I can see the people around me but can't quite connect to them on the level I want to as an adult, especially when only seeing people sporadically/for "catch ups" etc.

@ pragmatismuniversalsentimentalist ·

Yes you are right in that most people check out a new location and parking, but to what extent do they do so and how anxious are they? I have to have everything written down, directions train times etc even when visiting the town I was born in. I will sit and re read the instructions whilst travelling, worry about taking wrong turns etc. I got lost in in a hospital whilst visiting my Dad for over half an hour recently. I had to bowl up to the help desk and ask for help and then then still struggled to keep the instructions in my head.

I definitely is anxious behaviour for me.

@QuietlyQuriousmore than happy to pm details of the lady - am only 2 sessions in though.

regardless of whether I would or would not get a diagnosis I think coming at it from that angle helps. I was part of a mentoring scheme and the mentor I was matched with I just k ew was a bad fit. He was a partner in a big consulting firm and he was oh you just need to do this - in my head I’m going it’s not that simple my brain doesn’t work like that.

in someways the mentoring is making me wonder if I should seek a diagnosis as I do relate to it so much and then I think well maybe everyone does…… a friend has in her early 50’s and the medication has really helped.

My dd will drink an occasional redbull if she forgets her meds as she says it has the same effect - I’m wondering if I should try that before work one day to see what happens 🤣

Interestingly none of my behaviours are anxiety driven - I’m almost the opposite of anxious about most things, confident to the point of ignoring any other opinion or input.

I'm a late diagnosis too - I found some of the articles on this blog really helpful especially the ones about being exhausted just trying to figure out how social situations work. https://helenjeffries.wordpress.com/

I mean, there may well be and it wouldn’t be beyond the realms of possibility, but it’s so hard to distinguish isn’t it?

I remember post diagnosis there was a time when I felt like nothing more than a collection of traits (as opposed to just having a personality). I’ve come full circle now (like many posters here) and try to address those traits individually rather than worrying about where they came from; but I think that’s probably a privilege of having gone through the process of having accepted them all, irrespective of provenance 😆

I wish you well and I think you’ll be fine either way. Self reflection is really useful in this old journey, I’ve found.

I’m reading all the replies and really appreciate them — I’ve got a toddler keeping me busy so I’m a bit slow replying, but I will catch up when I can 😅

@ kingarthurt ·

Popped back to say, I also have a diagnosis of OCD, we sound quite alike. There are repetitions of intrusive worries and systems I have had to create in order to navigate life. I also agree that the trying to separate ADHD and Autism traits lessens over time. It becomes a case of finding resources and tools to be able to regulate better generally.

To the poster who mentioned things getting worse in perimenopause, I agree whole heartedly. Things are really improving for me in the post menopause years. Getting a diagnosis was really part of this for me. It brings a sense of peace and clarity.