Supporting undiagnosed autistic girls

[Livelaughplay]

I think my 5.5 year old daughter is autistic. A few things have been slotting into place - mostly an apparent lack of empathy, finds it hard to join in when groups of people she knows are in slightly different or unexpected configurations, can try to implement lots of rules, couple of sensory things - amongst others.
I think I feel strongly enough to explore a diagnosis pathway, although DH is not convinced at all. But the thing is, we’re in the process of moving house and school and so everything is up in the air, and it will be a while until we can settle. So I won’t do anything official about it until home is a bit more sorted.
But! I still think she might be autistic, so how can I help support her? What tips do parents of autistic girls have, to try and help her through this? Would you pursue diagnosis even while things are unsettled?
and how do I get over the guilt for all the times I’ve pushed her to do things that she was uncomfortable with? And what is the balance between trying to make sure she has opportunities to do new things, encouraging her to be a bit braver sometimes and not pushing her unfairly?
I feel like a crap mother and I’m worrying about her future and having changed her school

3.41% of u17s have a formal autism diagnosis: https://questions-statements.parliament.uk/written-questions/detail/2025-07-01/HL9024

That is 1 in 29 children. And of course there will be more that don't have a formal diagnosis, but are symptomatic like the OP's child.

The same source says 0.79% of adults have a diagnosis. But there is uncertainty about true prevalence. It says "Evidence suggests that diagnosis rates remain below the levels indicated by evidence on prevalence in ... older people, but are higher than the most recent prevalence estimates in ... younger people." However, this is a reference to results of the Adult Psychiatry Morbidity Survey which were withdrawn in May and are due to be republished soon:
https://digital.nhs.uk/data-and-information/publications/statistical/adult-psychiatric-morbidity-survey

Research should always use authoritative sources.

Good child psychologists will use authoritative sources too. Bad child psychologists may not.

TBH I would question the reliability of any stats around autism prevalence, given the variability in diangositc criteria and quality,

Also one more personal anecdote: I really struggle when I think that rules state that you must do thing X, but I can’t bring myself to do thing X, and the conflict between following a rule vs something I can’t bring myself to do ends in tears. And rules can be of any kind: I have stuff about food (easy to comply with for me), and there’s social rules (at university you’re a student, so you must go out partying and getting drunk, at work we all go for lunch together and you’re expected to come along and chat). So you can be in a weird place where you feel you HAVE TO do something because Rules but also cannot, just cannot do something.

I wouldn't be surprised if that's exactly what the revised paper will say.

I knew from age 3 but only got a diagnosis recently just before age 9 as everyone kept fobbing me off. It was obvious to me but not anyone else before a couple of key meltdowns when she was much older and it was no longer age appropriate. Be prepared for everyone to gaslight you about the more subtle stuff. I would get the process going now. As the GP to do a referral if the school won’t.

I also have concerns about the whole “masking” agenda. It is just coping with the world alongside your personal needs as much as possible, and yes age does help. But we finally got a diagnosis when the coping didn’t start happening at an age expected level (age 8, basically) along with other criteria (extensive echolalia) which could only be picked up by the psychologist/ peadiatric team (not us as parents or school teachers). I agree that doesn’t mean she won’t cope and adapt more expertly as she ages/gets into teens; all our support is directly towards that goal.

Ps @LivelaughplayMy DH didn’t see it at all either. You know your child and you probably observe her alongside her peers more often than him perhaps? What confirmed it for me was her younger sister developing in a radically different (neurotypical) way. But the reason my DH didn’t see it, I now realise, is because he is ASD and this is his normal. He really struggled through his childhood. I got him on board by helping him realise DD could have a much better childhood experience. Could any of this be the case for your DH?

sorry to read this bit it’s sounds like you got support at the right time.

After having my own children it’s been very clear to me that some of the stages they all go through under 5 (those who don’t go on to be diagnosed with anything) are some of the stages that the diagnosed autistic children go through at much later ages - sometimes in primary, sometimes later.

it’s within the realms of normal for verbal reasoning skills to still be developing at age 7. But some children get to the upper levels of these at younger ages.

Understanding verbal reasoning skills could be extremely helpful actually OP, as it’s linked to receptive comprehension and how we might discuss things may need to be adapted to the child’s level.

This is a good explanation. It’s essentially a speech and language tool. All children go through these stages. Children with specific speech and language difficulties and autism can sometimes find these stages more challenging to understand.

https://bedslutonchildrenshealth.nhs.uk/services/bedfordshire-and-luton-childrens-speech-and-language-therapy-service/supporting-the-understanding-of-language/blank-s-levels-of-questioning/

Autism is a speech and language condition spanning social communication and interaction skills.

If you read the above and really get to grips with it you can see how reading stories to children and then using questioning that matching their blanks level can really support understanding of the wider world. As I say, all children benefit from this, which is why reading to children is extremely important.

The other challenging side of autism is emotional regulation which can be linked to social interaction and understanding the world and events in their environment. (And also physical sensory differences) Some children are more sensitive to this than others; their fight or flight systems are more easily triggered (just as children without autism and adhd can be more or less sensitive. You can have hyper sensitivities without autism and adhd. The book and research behind Orchids and dandelions is helpful to understand here)

It won’t let me edit the mistakes in the first paragraph- hope your daughter is doing well now

*receptive communication and comprehension

You sound borderline excited by the fact that she maybe autistic . Those things you describe could be her personality . I wouldn't put her through a load of tests at age 5 , if she is autistic it will become very apparent and believe me it's no picnic as there really is no support for parents or children . I say this as a parent of a 44yr old autistic son who has struggled all his life . Just let her be a 5 year old .

I don’t read the OPs posts as excited - but I agree that it feels like, since social media algorithms went a bit bonkers on this, an awful lot of people think they are autistic or adhd or their children are. And they might be or might now be.

having taught in the area for 25 years, had my own children, seen friends children struggle and be diagnosed, and more recently, had friends be diagnosed, I have a nuanced view of it. I agree with Frith that the rejigging of diagnosis and abandonment of Asperger’s in 2013 was problematic. I agree that early intervention for needs is really important - some children do so well that they actually wouldn’t pass an adult diagnosis.

I know that many adults would probably “pass” the diagnostic criteria but actually have found ways in life to live and not be affected (see Tony Atwood’s recent comments) - I know a few GPs and teachers who strongly suspect it in their children but as their child is actually coping ok, and is very bright academically, stoically won’t seek diagnosis. Similarly I know some who recognise that they did need to as their child simply wasn’t coping.

And profound or severe autism is completely ignored/ forgotten about in all of this. And is extremely disabling.

Underneath all this is a massive lack of discussion about what actually helps children and young people - which is a key point in the gov interim review. And maybe if these things were more widely available, practised, accessible and known about some wouldn’t feel the need to seek diagnosis for themselves or their children.

Because what happens if the child isn’t diagnosed? They still have the same needs, challenges and difficulties that started the process in the first place.

School system needs a good shake up but that’s another thread!

I'm late-diagnosed with autism and adhd. One thing I will say is that a lot of people talk about getting outside your comfort zone as a good thing. I understand that it can be, but what those people never seem to understand is that some of us spend most of our lives outside our comfort zone just by leaving the house or answering the phone. I think maybe encourage but dont force, and try to ensure there's always a way out (and she knows in advance how to access it) if the new thing does get overwhelming. Some things are of course non-negotiable, like doctor's appointments etc, but other things might need an escape route planned in.

Thank you everyone, it’s all useful reading. This is the only social media I’m on, so I’m not excited by it or taken in with social media craziness and wanting to be part of some trend. And I find that quite an annoying response when I’m asking for ideas.

Im interested in this info about masking - so it is a thing, it isn’t a thing? It’s just coping and that’s a good skill? This is exactly the kind of info that I’d like to find out more about, so I will check out the reading on it.

also interesting that some think this is normal 5 year old stuff, especially given that we’ve got lots of stuff going on at the moment. I think that taking a beat is probably good. This is what my DH thinks and I’m happy to listen to him on it. I get that for some people it’s so helpful to know what’s going on with them, which is what I’m conscious of. And about whether to try and broaden her horizons or not. I think I just need to sit and observe a bit more perhaps

Masking is taken as gospel in the community, but actual rigorous evidence is very low and/or poor quality. Uta Frith, well respected autism researcher got clobbered lately by various interest groups when she pointed this out.

Agree that watching and waiting isn’t a bad thing to do right now, especially if you have a lot of other things going on. And actually if there’s lots going on, now is probably not the time to broaden her horizons. She’s 5 and will benefit far more from stability than random “enrichment” right now.