Late-diagnosed autistic women – does this sound familiar?

[DrawerofMystery]

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 could also explain some lifelong things that I've always put down to introversion or maybe something like social anxiety.

What makes me question it isn't so much socialising itself, but unfamiliar situations. For example, I often avoid new community centres, independent cafés, libraries or self-service coffee machines because I genuinely can't work out how the system works. Once I know the system, I'm usually absolutely fine. It's the uncertainty about what I'm supposed to do that I find really stressful.
If I know I'm going somewhere unfamiliar, I spend a lot of time researching beforehand (photos, layout, where to order, parking, toilets, etc.). I usually manage the event in the end, 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 tend to become intensely interested in topics. For example, when I wanted to put up a bee hotel in the garden, I didn't just buy one—I ended up researching solitary bee species, hole diameters, orientation, suitable materials, etc. I often find myself wanting to understand how something works rather than just accepting that it does. My husband laughs because I can't seem to do anything "by halves"!

Socially I'm a bit odd too. One-to-one I can be quite chatty (possibly the ADHD), but in groups of 3 or more I often don't know when to speak and end up mostly smiling and listening.

Since having my daughter a few years ago, this has become more of an issue, because I need to take her to new places and activities, and sometimes I avoid them because the uncertainty feels overwhelming.

I've done several screening questionnaires:
AQ-50: 32
RAADS-R: 83
CAT-Q: 116
GQ-ASC: 58

They all suggest elevated autistic traits, although my AQ score is around the usual threshold rather than extremely high. Interestingly, my AQ-10 score was only 5, just below the usual cut-off, which has made me even more unsure what to think.

I'm not asking anyone to diagnose me! I'd just really like to hear from women who were diagnosed as adults. If you were diagnosed later in life, did your experience sound anything like this, or was your presentation very different?

Just bumping this in case any late-diagnosed autistic women see it this morning 🙂

Hi, I'm not diagnosed but recently come to the conclusion I am pretty sure I am autistic. After more than 1 of my children are now on the pathway and reading up about traits etc I realise I am quite similar, and looking around family members now I'm sure there are many somewhere along the spectrum who have no clue. I also have always just thought I have social anxiety and struggle during conversations but now I am glad I realise there is more to it than just me struggling for no reason. I'm sorry I haven't really got any advice but yes alot of what you wrote does sound familiar. I have also watched many YouTube videos from autistic people which have been very helpful in explaining traits and things they find difficult.

@Dogsareyourbestfriends
Thank you, that’s really helpful. The social anxiety part especially sounds very familiar — for years I assumed that was probably the explanation too. Do you also find unfamiliar places difficult because you’re not always sure what you’re supposed to do or how things work there?

It’s interesting that you started recognising traits in yourself after learning more about your children. I’ve also started noticing some similar traits in members of my own family.

Can I ask, was there anything in particular that made you go from thinking “maybe I’m just anxious/introverted” to feeling fairly sure autism fitted better?

@DrawerofMystery I am not too bad with unfamiliar places it's more so the people there and big crowds I'm not a fan of. I much prefer going to quieter places that are not as busy.

Yes I always just thought it must be social anxiety but after reading more around autism it definitely fits more as I feel it's a lot more than just social anxiety. Not sure I would get a diagnosis though to be honest I'm aware the spectrum is broad and I would describe mine and the family as high functioning as in no learning disabilities with it, have families, jobs etc but they don't know how to talk and communicate properly. Also the majority is hereditary so they say if a child is diagnosed first thing they look at is the parents then the wider family.

I think the lightbulb moment for me was reading up a lot about it after the children had signs for example late speech then with the majority being hereditary and thinking about the rest of the family I think I just new. And it's been such a relief to be honest knowing why I have difficulty during some conversations, when others seem to do it so naturally.

Thank you, that’s really interesting and helpful. It sounds as though some of our experiences overlap, especially around social anxiety and conversations, although I think one of the main things for me is the uncertainty of unfamiliar places and not knowing how things are supposed to work.

It’s useful to hear how different it can look from person to person though. I’m glad figuring it out has been such a relief for you.

@DrawerofMystery Yes it definitely can present differently in different people. People struggle more in different areas I think. Also there's masking which alot of women have learned to do to just try and blend in. I know my worst is the social part and speaking to people especially people I don't know I find not easy. But have a look on YouTube there are some helpful videos on there I have found.

@Dogsareyourbestfriends
I’ve been reading quite a lot about how autism can present in women too. I haven’t really looked at YouTube yet though, so I’ll definitely have a look — thank you!

At first I thought I didn’t have much sensory sensitivity, but the more I’ve thought about it, the more I’ve realised I do get overwhelmed by certain sounds, including music or the TV, and by some smells too. I really can’t stand the smell inside cars, and certain fabric softeners or even some unused bin bags bother me a lot😔

@DrawerofMystery Yes I think you might find the more you read up about it the more you may actually realise new things about yourself that you wouldn't necessarily thought maybe connected. I know certain things have made a lot more sense to me now and I try to be a little easier on myself when certain situations arise.

@Dogsareyourbestfriends
That makes sense. Can I ask whether you’ve considered seeking a formal diagnosis yourself, or whether you feel that understanding it this way is enough for you at the moment?

@DrawerofMystery Just read your OP and I’m shocked how similar to me you sound.

I was diagnosed with ADHD start of last year and advised to be assessed for autism too (still need to do this). Also just started ADHD medication.

I feel exactly the same about going to new places and needing to know how things work, once I’ve been somewhere before it doesn’t bother me to go back there again.
When I had my DD now 4, I was so stressed about going to baby groups and not knowing the system and being perceived by others that I did not know the system if that makes any sense 😂

Something that did make me question autism before was if I’m going somewhere e.g speak to GP receptionist, I would need to have a script prepared in my head of what I would say or if I needed to make a phone call too I’d do the same.
I also had sensory issues too that made me question it too.

@DrawerofMystery My 3 year old is on the pathway and I'm told the waiting list is about 4 years for him to even be seen for the first time so god knows if I would even be accepted, this is with the nhs. My other Son also is showing traits and the school put a referral in for him but I've just been informed he doesn't meet the criteria to be assessed at the moment as he's doing well in school and no real problems, even though im sure he is. I would probably have to go private but don't think a diagnosis would change anything to be honest, after doing my own research and a lot of reading I am sure this fits me.

Thanks so much for your reply! The baby group example sounds really familiar. I’ve been going to a stay-and-play at a community centre, but I still can’t figure out what’s going on at the back of the room where they have a coffee counter. I’ve even seen people getting food from somewhere, but I have absolutely no idea where they got it from 😅

The coffee counter is behind a busy area with tables, so I can’t really see how people are ordering, what they have available, or even whether there’s a menu board. Then I start worrying about things like, “What am I supposed to do with my daughter while I’m ordering?” Are those the kinds of things you struggle with too, rather than just finding the physical layout of a new place difficult?

The script thing is the same for me! I usually rehearse in my head exactly what I’m going to say as I walk up to reception or before making a phone call, and I can still get a bit panicky if they ask me something I wasn’t expecting.

Now that my daughter is two, I need to take her to more unfamiliar places without my husband, and I find myself dreading it even though I want to take her out more. English isn’t my first language and I didn’t grow up here, which probably adds another layer, but I increasingly feel that doesn’t fully explain the difficulties I have.

Can I ask what first made you suspect autism in your 3-year-old, and what sort of signs he was showing at that age?

My daughter is two, so I’m becoming a bit more aware of development now. Her communication seems quite strong so far, although her gross motor skills have tended to be towards the later end of the normal range. At the moment I’d probably be more inclined to wonder about ADHD than autism with her, if anything, but with both parents wondering about neurodivergence I do find myself paying a bit more attention to things 😅

As for my own diagnosis, I feel similarly about the NHS route and I’m wondering whether it might be worth paying for a private initial screening just to get a better idea. I don’t think I could afford a full private assessment, especially when I’m not sure a formal diagnosis would actually change much about the difficulties I already have 🤔

Autism in women doesn't show up well on tools like AQ-50. The difficulty with change and with group interactions fits.

Try to find the screening tools for your native language. The language gap may confound you.

@DrawerofMystery My 3 year old is so similar to my 9 year old when he was younger so I was already keeping an eye on him. Lack of speech he just mainly makes sounds at the moment, eye contact not great, not always answering to his name, lack of awareness around him for example someone could walk into a room and start talking to him and he wouldn't even realise. Has sensory issues loves to chew everything and hand flaps alot. He only turned 3 last week but I think it's pretty obvious.

Also I am very similar to you about appointments or talking on the phone I go over in my head what I should say etc I get very nervous at any appointments and dread going for weeks or even months in advance when I know it's booked in.

As for NHS yes I would probably be looking at years to be seen. I probably couldn't afford private either and seems a waste paying a lot of money for something I think I already know. Even if you get a diagnosis that's it I don't think there's really any other help available for adults other than for peace of mind.

Haha oh my god that sounds exactly like how I would be at the playgroup. I wish I’d had a mum friend like you with a similar brain 😂
I do get quite overwhelmed with the logistics of things too like you’ve mentioned and really overthink/ over prepare for situations.
I also over analyse situations and worry if I come across rude to people cos I’m awkward 🥲

I’ve always wondered how other people just seamlessly know things/ do things whilst seemingly completely un-phased or maybe that’s just how they come across to me?

I can’t even imagine how it must be living here with English not being your first language too as it adds a whole other layer. What is your first?

That’s a really good point, thank you. I’ve wondered whether doing the questionnaires in English might affect the results a little, especially with questions where the exact wording or nuance matters.

I might see whether there are validated versions in my first language and compare, although I suppose masking and the way autism can present in women could still make any questionnaire quite imperfect.

The difficulty with change/new situations and group interactions are definitely some of the things that have made me wonder about autism rather than ADHD alone.

@Dogsareyourbestfriends
Thanks for explaining, that makes sense. It sounds like there were quite a few things together that made you feel fairly sure, especially as you’d already seen similar traits in your older son.

I don’t remember having anything particularly obvious as a young child myself, although I do remember being told that I didn’t show much expression on my face 😅

I actually had a dentist appointment for myself today, then another one for my daughter a little later. We also had two visitors scheduled in the afternoon (although my husband was going to deal with them). and even though I’d known about the appointments for months, I started dreading the day more and more as it got closer.

I think it was the combination of uncertainty at the appointment because I had some administrative issues to sort out, having several things scheduled in one day, and the fact that having visitors always feels stressful too. But once I'd actually stepped out of the door and gone to the appointment, I was basically fine, and once it was all over I wondered why I’d been so stressed beforehand. The night before was probably the worst part for me.

@Matchalattecoco
Haha, yes, that’s exactly it 😂 I’m always wondering how other people seem to just know what to do without having to think everything through first.

I originally assumed a lot of it was just because I wasn’t used to how things work in the UK and English isn’t my first language. But I'd say my spoken English is fairly fluent by now, and I’ve realised I have very similar problems even in my home country, so I don’t think language or cultural differences fully explain it.

I’d rather not say exactly what my first language is as I’m a bit paranoid about outing myself on here 😅 (There are not so many people from my country in the UK)

Ah sorry of course, I didn’t even consider that! I’m not a regular contributor on here😅

I was going to ask if there was much culture difference as I’m sure that could make things trickier. I find alot of British people quite indirect with how they talk, so it can be harder to read people sometimes.

I saw you mentioned potentially your child being neurodivergent. I’ve had similar thoughts about my DD who seems to present veryyy similarly to how I did as a child. I’m unsure whether to wait to see if when she starts school if anything is flagged.

In my case, the diagnosis unlocked Occupational Health support and reasonabek adjustments at work.

There are definitely quite a few cultural differences, although my own culture is quite high-context too. I think what confuses me more is when I don’t know the usual expressions people use in certain situations. Sometimes I understand every word in the sentence, but still can’t work out what they actually mean or what they’re expecting me to do 😅

With my daughter, I’m not particularly worried at this stage because she’s still so small. She does seem quite sensitive to different environments though, and if she gets overwhelmed it can sometimes end in a fairly big meltdown.

When she’s tired, a tantrum can last around 30 minutes, whereas her more typical ones are probably around 15–20 minutes. It seems to happen less often now that the worst of her teething has passed, but when she does have one it can feel quite intense and long compared with what I’d expected. She can't be touched/talked to during the tantrums (it gets worse!) and I can only stand there trying not to meet my eyes with hers and staying very quiet and still😭

So at the moment I’m more just keeping an eye on things rather than thinking there’s definitely anything going on.

Oh bless her, that sounds challenging. My little girl was very similar until she got to around 3 and it did calm down a lot. She was such a highly sensitive baby/toddler, I struggled so much!!
Even now I still just sit my with Dd during tantrums as she’s hard to get out of them and just offer her a hug for whenever she’s ready and can talk about it.
Like you say it is still very early and hard to know what is just ‘normal’ behaviour/their personality. Especially with mine being my first.

She now just seems to present very similarly to how I did as a child being more of an observer, sensitive, very thoughtful/day dreamy and loves routine. But shes very happy/settled so I’m not too concerned atm🙂

@Matchalattecoco
It’s good to hear things calmed down for your DD around 3 :)
I’ll just see how things develop with mine, I guess! Thanks again for all your replies — they’ve been really helpful.