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?

Hi. Im 42, was diagnosed ASD and possible ADHD a few months ago. I identify with a lot of what you say - researching new places, needing time to recover afterwards....
My main thing was that ive always felt like an outsider. Like an alien who didnt get the rule book on how to be a human.
I have very black and white thinking.
Like you I an ok 1:1 but put me in a group and I go to pieces.

Hi,
I am similar when going to a new place- especially when it comes to parking.

I have an ADHD diagnosis but my ASD scores were lower and I wasn’t accepted. I do feel like some of my anxiety and thoughts are quite similar to what I have read about ASD, but I also know that there is crossover with sensory issues and other thought patterns.

I am trying to read more about ADHD to try and help me understand.

My dh reckons I display aspects of adhd . Not been diagnosed.

The comment about being an alien so resonates with me.

The odd thing I find is that put me in a work situation, I can chat to anyone. However, talk to those same people in an informal and/or social situation, I don’t know what to say.

Also, at work, I’ve seen newbies integrate and get into the inner circle, whilst I feel on the outside. I feel I missed cues onto how to progress, or am the last to know something, even if it’s something as mundane as Suzy’s got engaged.

I’m all about systems. If I can’t frame it as some kind of system, I struggle. And this is how I deal with people too - I run them almost as an analysis of a system, there is no intuition.

I get very absorbed in things and have to take them to the n-th degree, but I can’t choose what’s going to trigger the absorption.

Like you it was having children that lead to a diagnosis. Turns out my work and life are perfectly set up (almost accidently) to facilitate my approach to life, but my children didn’t get the memo. Having to deal with them was what made it clear things were not normal.

I recognise all of this. I'm not diagnosed but my DC are and I was considered an odd child. My mum wouldn't let me be assessed further as she was afraid it would stigmatise me and hold me back. I suspect she may also be ND in some way and my dad almost certainly was based on what I know of him (he died a long time ago).

@Frieda86
Thanks for your reply!
Re researching new places — I’ve seen that for some autistic people, checking a place beforehand is mainly about avoiding sensory overwhelm. Can I ask if that’s the case for you too, or is it more about wanting to know the layout and how things work there?

I don’t drive, but I’d definitely get nervous if I had to find parking or use an unfamiliar car park!

I also have some sensory sensitivity — I get overwhelmed by sound, so I barely listen to music, watch films or turn on the sound on my phone in my free time. Certain smells really makes me sick too, especially cars, some fabric softeners and even unused bin bags 😔

The overlap between ADHD and ASD does make it really hard to work out what’s what.

I check parking, the way tables are laid out and seating, but also feel nervous about whether pay first or take a seat first etc. Anxiety is common with both autism and adhd. It is ok to self identify as autistic if you feel you fit and it helps you to reframe certain things in your life. It was only when my children were being diag osed that I realised a lot of the things considered normal in my family growing up were traits

I really relate to the part about seeing newer people integrate while still feeling on the outside. I’ve had that a lot too — people seem friendly enough with me, but somehow it often feels quite surface-level, while other people seem to form closer friendships much more naturally.

That really resonates with me, especially the bit about systems. I think that’s exactly what I struggle with in unfamiliar places — not necessarily the place itself, but not knowing the “rules” or how the system works.

I’m really curious about that part. What kinds of unfamiliar places do you find hardest, and what are you usually trying to figure out beforehand — where to go, what order things happen in, what you’re expected to do, or something else?

Yes sounds familiar to me I am the same

That’s really interesting. I’ve started wondering about my family too — I suspect my dad may have some autistic traits, although of course he’s never been assessed. It does seem quite common for people to start recognising similar traits in relatives once they begin looking into autism.

@QuietlyQurious Yes, so true. Someone once said to me that I knew a lot of people. Maybe I do, but I don’t have that close network of buddies who go on spa weekends, out for coffee, have New Year’s Eve parties etc. Instead, I feel let my dc down as a result. I so wanted a house where their friends come and go, but it’s not happened.

Yes, that’s exactly the sort of thing I mean! Things like whether you pay first or sit down first, whether there’s somewhere to return a tray and where it is — those are the things I find myself wanting to know beforehand.

Can I ask, are you diagnosed autistic yourself, or did you mainly start recognising the traits in yourself when your children were being diagnosed?

@Gateappreciation
I really relate to that feeling of knowing people but not quite being part of the closer circle. I’ve had situations where I thought I was getting on well with everyone, then realised they’d been meeting up or going out together without me.

I can understand why that would make you feel sad about the kind of social life you hoped to create for your DC.

I am diagnosed AUDHD it can be hard to differentiate between the two. ADHD can result in intense hyper focus, but there is a repetition of intense interests for me, some since childhood. I have watched favourite films for instances, dozens of times. My sensory issues and social anxiety are very prevalent. A smell, sound or certain lighting can instantly make me feel physically sick. Whilst being aware of not fitting in and trying to read social cues, I invariably, say too much, say the wrong thing and have no filter.

I am overwhelmed by things such as action films at the cinema, to the extent that my brain fog and exhaustion is so bad the next day, that I can barely function. I mask very successfully, but can totally identify with your feeling of being on the outside of things. I frequently rehears what to I want to say, share things I didn't intend to and then dissect the conversations I have critically, sometimes for days after.

@Neuronimo
Thank you, that’s really interesting, especially hearing from someone diagnosed with both.

I relate a lot to the sensory side. I can’t really cope with concerts or live music because I feel the beat almost physically in my chest and it makes me feel unwell. Even at home I often prefer no music or TV, especially when I’m tired, because having rhythm and sound coming at me regardless of how I’m feeling can start to feel overwhelming and just “too much”.

My interests also feel quite specific and consistent. I’ve always had a very strong interest in animals, plants and wildlife, whereas I’ve never really been able to get interested in things like celebrities or pop culture.

At the same time, I can be very chatty, which I suspect may be more on the ADHD side. I definitely have a tendency to overshare with strangers and over-explain things, then sometimes wonder afterwards why I said so much!

It really does seem difficult to work out which traits belong more to ADHD, which to autism, and which are the combination of both.

Can I also ask whether you ever struggle with unfamiliar places like cafés, libraries or canteens because you’re not quite sure how things work there or what you’re supposed to do?

Yes I absolutely struggle to navigate new places, travel is very problematic for me, unless it is a familiar and frequently travelled route. I do think that fits in with the autism side of things. It is hard to explain, except to say the unfamiliar can feel very strange, overwhelming and disorientating. Struggling to learn new gadgets and equipment again absolutely. I had one job for over twelve years, but learned painfully slowly through repetition of tasks, until I became reasonably successful.

I do also research things, like you do. I call it my rabbit holes, an intense hyper focus that can last hours days or weeks. I think I see the world in quite a fragmented way, noticing a lot of small details but sometimes not making sense of the bigger picture. I don't always retain what I have learned, even if I have spent a long time researching a subject. My learning profiles were extremely spiky as a child, with some specific learning difficulties in subjects like maths or technical drawing. Numbers make absolutely no sense to me and I struggle to see certain patterns in things. Words and English language were a joy.

I am disorientated by corridors particularly, even the GP surgery which I am very familiar with. If there are identical doors I can't work out entrances and exits when I come out of a room. Escalators are physically hard to navigate and I still struggle with balance, coordination and proprioceptive awareness. My husband will give me a left and right instruction and I'll ask which left? 😄

I can learn a skill and then lose it, particularly on the computer. I do think that fits more with the inattentive ADHD though. It would definitely be worth you exploring the autism side of things I think, as they are often linked.

Earl loops help a lot to filter out loud music in shops and cafes. I know what you mean by the heart racing effect.

Wow, there’s actually so much in this that sounds familiar to me!

The disorientation in unfamiliar places especially really resonates. I’ve always assumed that was probably more of an ADHD thing though. I can follow room numbers or signs to get to a consulting room in a GP surgery, dentist or hospital, but once the appointment is over I can genuinely struggle to work out how to get back out again 😄

I think for me there are two slightly different things going on with unfamiliar places. One is the physical layout and getting disorientated, but the other is not knowing how the “system” works — where I’m supposed to go, what order to do things in, what something is for (or if it's for me to use), whether I’m supposed to wait, pay, sit down etc. Once I’ve seen how it works I’m usually much better.

What you said about learning equipment and computer systems painfully slowly through repetition also really stood out to me. I’m exactly like that. I can eventually become quite competent once I’ve repeated the same process enough times, but learning a new system can feel incredibly difficult.

The rabbit holes sound very familiar too. I can research something intensely for days or weeks, but then once my interest has moved on I sometimes retain surprisingly little of it. I once wrote my dissertation in an intense period of hyperfocus and then, not that long after submitting it, someone asked me what the title was and I couldn’t immediately remember it 😅

I’m also the opposite of the stereotypical “numbers” thing you sometimes see on autism checklists — numbers like population or large amount of money don’t stick in my head at all, but I'm very good at languages.

I've been interested in Loop plugs for a while now. I’ve wondered about trying them. I’m usually OK with ordinary café noise (I do struggle to hear/understand if it's busy though), but when I’m tired I can find even music or TV at home too much, and things like building work or live music can feel physically overwhelming.

Thank you for taking the time to explain all that — it’s really helpful hearing from someone actually diagnosed with both ADHD and autism. I’m starting to think it might actually make sense for me to explore the possibility of autism as well.

Struggling with new gadgets is me to a T. So I bought a fancy coffee machine and tried it once, struggled. Didn’t turn it on again for 12 months as was too overwhelmed and only did it then as one of my siblings came over and made me do it. Saying that I haven’t used it for over a year now as it is too much to cope with.

bought a fancy camera. Never used it apart from a five minute fiddle Was very expensive.

but I spend ages researching what coffee machine or camera to get.

if I go to a new place I have to do a google maps streetview thing of the building before going. If it’s a new town then I will google streets map the entire journey before going.

I don’t have any diagnoses but can relate to a lot being discussed here. I’ve wondered about getting assessed but worried how it would impact things like jobs, critical illness cover, etc. Having said that it would be nice to have a reason for the way I feel.

I’ve always felt like an outsider / alien and not a ‘proper’ human being as I don’t innately know how to behave in certain situations and struggle to make connections with people.

Have a huge fear around parking in unfamiliar places and either book on just park type apps so I know exactly where I’m going or get to places super early (ie the beach when it’s not even warm yet as so early).

I like music in certain situations but never listen at home or in the car as I find that overwhelming, so my house is very quiet. I prefer podcasts. I can’t stand strong smells, etc - find it baffling that some people choose to put those artificial air fresheners in their homes as those sort of really synthetic smells are the ones I find the worst.

I’m very quiet and reserved but then sometimes I’ll talk over people and blurt things out.

Can relate to the not being able to figure things out so much! Often buy things that stay in the box for weeks, months or even a year as I can’t face trying to work it out. In fact even if I order new clothes, etc I find it takes me weeks to open the parcels, to the point where I’ve been forced to keep things as it’s past the return date.

I don’t have any intense hobbies as such but do get obsessively into things from time to time and go down rabbits holes reading up on them.

I want things in my life to very organised and tidy but find I can be quite chaotic and disorganised.

To those who are diagnosed, have you found any downsides with getting your diagnosis?

Yes, a lot of that sounds familiar to me (diagnosed last year at 37). I scored a clear 10 on my AQ-10 and my GP (who specialises in neurodivergence) said he would have diagnosed me on the spot if he was allowed to 😂

It's interesting that there are so many similarities. When my son was diagnosed with autism, they explained the struggling to hear in busy places as hearing everything as a wall of sound. We both hear all sounds at once without being able filter some sounds out.

I feel similarly to you. I enjoy music or tv on the days when I feel well regulated, but need to retreat into my cave, on the sensory overload days.

@Ilovefruitpastillesthe main downside for me was that getting my diagnosis almost gave me permission to stop masking as much, which led to people thinking I was faking or exaggerating as “you were never like this before”.

I’ve also been told on here (under previous names) that as I express myself so well I can’t possibly need the support that I claim to need.