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

Start sorting a diagnosis.
Do some research so you can put together a life fit for an autistic girl.

Buy a bunch of books and read online accounts by autistic women who describe their childhood experiences. I like Fern Brady’s book. There are loads of books on Amazon and forums online. It will give you a rounded look at how it can present in girls, how they were perceiving situations and how the adults were perceiving the situations.

Dd was quiet, sensitive to noise, very emotional, went stiff if you tried to cuddle her sometimes, very pedantic, needed alone time, had anxiety about texting. Her best friend, also autistic, was talkative, touchy feely, missed a lot of social cues, always wanted company and wanted to text all the time.

You have to get to know what’s best for your dd as general tips may or may not work for her.

I’d start the diagnosis process now as it takes a long time (years) to get seen.

Thanks this is interesting, perhaps we had better get started with the process. I will check out that recommendation

One of the things I liked about the Fern Brady book is that she realises that her parents had, in fact, been quite neuro-affirming in lots of ways. Diagnosis is great but it doesn't come with instructions on how to parent your individual child.

DD has done well so far with good routines, rhythms (so more challenging stuff balanced with down time) and indulgence of special interests up to a point (still glad we didn't get the dog...) In that though it's ok to have your own set of expectations and needs as a parent; a lot of online ASD influencers and some groups can be very 'my way or the highway". Someone in a local ASD group told me it was abusive to send any ASD child to mainstream school (never mind the fact she's doing well there and enjoys it, part way through secondary). But we have worked with schools as a partnership in that.

In general we do expect her to give new things a go but within the bounds of things we know she will get a lot out of. So I wouldn't expect her to start going to a social group, but there are some structured and unstructured new activities she will enjoy, she travels well etc.

But is all very much about your individual child! Tbh DH has been better at instinctively parenting than me but engages very minimally with any reading or any 'shoulds' which I guess is a great example of knowing your own child.

I’m going through the exact same with my daughter, almost 5. I know she’s autistic but it’s not obvious to the naked eye and I’m worried i wont be listened to. Even friends and family think im being silly. Im so worried about her struggling when she starts school

@Livelaughplay knowledge is power, so do read up and help her navigate it but, so long as she is high functioning, don't expect the world to bend over backwards for her... its a very common condition, and many people lived and thrived with autistic traits before diagnosis was a thing.

BBC News - NHS bosses warn of chaos in ADHD and autism care - BBC News
https://www.bbc.co.uk/news/articles/cy4zgpynwdjo

Thank you, this is really helpful. I like the idea of rythmns as well as routine, I think we lean a bit this way already.
and good to know it’s ok to push her sometimes. Parenting is hard!

Interesting- thanks. Yes I do feel a bit of a jumping on the bandwagon, but it’s really surprised me! In a way it’s good to hear it is common really. I just want her to be happy

DD is 6. I have noticed a number of things in the last 6 or so months, I've contacted school to discuss as she starts yr2. We've had a lot of change in the last couple of years. Divorce, lived with my parents and now our own house.
I'm not concerned from a learning point of view but I take a lot of the fallout. A lot of it for us is trial & error. Lot of sensory things i.e. short sleeves with a cardi or coat/ponytail at a certain height/extra large egg timers. I feel like I have 20 strategies in place to stop things falling apart sometimes but, fortunately, most of the time it seems to work.

I wouldn’t call 1-2% of the UK population common 🧐

The bit about " do your research" is not a path i would go down. Find a good child psychologist and get their advice as well as flag it for the school. These people are trained and will give good advice rather than the dark hole of online " experts"
Do not gamble your daughter's future on the Internet

DD is diagnosed by the way (and was v obvious to us from around 2). I would still pursue that, but bear in mind there isn't loads of support out there anyway. If you think you need an EHCP later then having a DX, if she gets one, helps speed things up marginally and with some schools can be helpful.

Parenting is hard!

Assuming you're staying in county try to get the referral started as it can take a couple of years. Or if your area is still doing right to choose through NHS that might be quicker.

You never know when support will be needed even if 'coping' fine now. E.g. a lot of ASD girls start struggling in secondary school. But either way they will know they're different so understanding why is vital imo.

My advice is to get an ADHD assessment at the same time. They often go hand in hand, and ADHD is treatable.

Look up low arousal.
Social stories.
When you say lack of empathy do you mean she can't imagine how others are feeling, or she doesn't care about how they're feeling?

I'm audhd
I wish I had someone on my side growing up that could of explained to me how my brain is just different. How I need downtime to function but it doesn't make me broken. I internalised so much growing up that I was wrong/broken because I could never be like my friends who seemed to sail through life whilst I was exhausted.

Definitely echo what pp have said that it's about learning your daughter and specifically what she's needs. Lots of trial and error. Definitely start the diagnosis/ehcp (its taking years with my child even with right to choose)

I'm a high functioning high masker. Whilst I hated school it wasn't untill secondary that I could of really done with a ehcp. So it's absolutely worth having even if things seem fine now. I also had counselling at school I look back now and can see that really helped and got me through some of the really tough times at school. It was essentially having a safe place and 1 to 1 support. Had i of had more support in place I think it would of been the difference of thriving instead of just surviving. I was very academically able but because I was so exhausted just existing there was no room and I felt no point in trying hard with school.
University was the most wonderful place for me where I absolutely flourished. If only schools could replicate more of what Universities get right.

Still to this day no one I meet believes I am audhd. So I'd say having you believe her would make a world of difference.

Thank you, I’ll have a look. She does stuff like throw a ball in my face and not seem to think it might not be nice for me, I explain it, but she just sort of either doesn’t seem to care, or can’t articulate or show her feelings that she does care, so it certainly comes across that she doesn’t care.
Her tone can also be so rude, she mimics a lot of things I say with her brother, and I have to remind her she’s not the parent, but I’ve started to wonder (looking at the big picture of lots of little things), if maybe she’s trying to order her environment and control her brother (this steps up a lot when she’s anxious). It’s hard to explain it. I’ve found myself this holidays saying that she’s being a bit selfish, that’s she’s being rude, that she’s being thoughtless, that she doesn’t seem to mind that she’s hurt someone’s feelings, that’s she’s not more important than her brother - it’s all with me, DH and brother - and I wondered if maybe these things are telling a different story than she’s just a brat.

and I don’t want to damage her by keep saying these things to her if actually she’s got something else going on. There are other things too - a few social and sensory things, but these are the things that have made me start to wonder.

Be aware that evidence for masking is poor quality, despite what the internet tells you.

I am a late diagnosed autistic woman but looking back my parents absolutely got it right for me, and if they hadn’t I’d probably be a mess. I had huge freedom to do what I wanted (mainly read books and spend time with computers and model horses), school was a small part of my life (only 9-3:30) with a 5 minute walk by myself there and back, and crucially it was an all girls’ academic school where I got a social pass because I was academically strong.

No enforced hobbies, no enforced socialising, minimal enforced interactions. I feel I had a very good childhood.

Thank you for sharing this. It must have been so hard. This is sort of what I want to avoid for her - instead of me saying ‘you’re not a nice person and why can’t you be kinder and more thoughtful’, I want to support her so she knows she’s ok, she’s great, she’s just coming at it differently.

DH isn’t completely open to it, because she’s always been described as doing really well at school, lots of friends. But I’m saying, maybe she’s masking, and also she definitely struggles socially with certain things, it isn’t all plain sailing

Also be aware that a lot of what you describe in this post is entirely within the boundaries for normal 5 year old behaviour. FWIW I can spend hours navel gazing about whether a particular trait of mine is autism, normal or some mashup of the two.

And do you think that was better than being able to try lots of things? My daughter never wants to try new things, or activities. Her friends all do lots of weekend and after school things, and she always says no when I ask her. But should I push her to try some things to see if she likes it, or just leave her be? I feel sad that she’s not having these exciting opportunities, but I want to also be considerate.

This is what DH says. It’s just normal, she’s got a lot going on, which is true.
I don’t know anything about diagnostic criteria for girls.

Firstly you’re not a crap mother!

And secondly, definitely look around at what might help - apart from anything if she gains a diagnosis you will have already started to work out how to help, but if she doesn’t - you’ll have started to work out what helps too.

it’s quite hard to advise over the internet as whilst there is more info about the “profile” of autistic girls in practise I don’t think it’s very helpful (I teach children with autism.) As I’ve met girls who fit the stereotypical profile that’s been written about and many who don’t at all.

Stories are extremely helpful as they support understanding of life - all stories that look at normal life. Like the Alfie books and similar things. They teach the rules of life. So read as much as possible to her. It’s why so many like peppa pig and Bluey as they’re about normal life. Social stories can help but are best done with support from a speech and language therapist. Which may be much further down the line.

Playing board games helps hugely - it’s a structured way to introduce play which over time can be transferred to social interaction - that’s where a background of understanding social interaction via stories can help.

If you have any opportunity to seek and pay for support from a private OT that might be helpful too.

I agree with @DeafLeppard. And the things I’ve listed will help any child. If you’ve noticed some issues look into what is needed to give her a boost.

Masking is not evidenced - the very things that a child with autism struggles with is an inability to suppress those things. Over time children can learn emotional regulation, social communication skills. Some it may take till their teens and they’re more likely to be given a diagnosis of autism. Some it’s very early and they stand out as being extremely socially able but others fall in the middle - they just need more time to develop rather than diagnose. Having said that Id probably start querying and investigating a referrals simply because it takes ages. And if she doesn’t, as I said, you’ve started looking at strategies to help her.

Being forced to try anything is my idea of hell. I can guarantee you I missed out on absolutely nothing by not trying (mostly poor quality) kids’ activities. Everything you said in the post above is about comparing her to others - about what you think she should do, what her friends should do. Autistic or not, that’s not her. Save your battles for the stuff that you probably will need to make her do at some point - forcing her to do stuff that’s utterly a bit pointless (to her, anyway) just wears her down and leads to a breakdown in trust.

The activities I did (and continue to) enjoy are solitary and therefore quite difficult for a kid to do. I did really enjoy piano (not an orchestral instrument, something I can do by myself), swimming - I could spend hours just messing about by myself in a pool, and later in life, running and cycling.