What were your girls with ASD like as toddlers?

[Haveli]

My DD (2 yrs 8 months) is struggling with nursery at the moment, she says it is too loud. The staff have said she is much happier in smaller groups, comes into her own when the other children are napping so it's quieter, and will often take herself off somewhere quiet.

This, combined with a few other things (e.g walking on toes) has led DH and I to have a conversation about whether she could possibly have ASD.

She doesn't have any of the 'classic' symptoms like a speech delay or lack of eye contact - in fact her speech is amazing and she's very sociable when DH and I are around. But I've read and been told that in girls things can present very differently, so I was just wondering if anyone could share their experiences? TIA!

I would (in hindsight!) have described my DD1 as 'always on alert' . She was wary of new experiences, slightly anxious. Very sensory (clothes were tricky as she a) preferred to be naked and b) they had to be very soft with no labels... she lived in soft joggers for years! She has also was very very restricted with the foods she could tolerate.
She also had excellent speech, good eye contact and was quite sociable, but did need a lot of 'down time'

Now an adult, and a doctor! Still very sensory, highly anxious with a very restricted diet (now called ARFID) but has good friends and a good life on the whole. We didnt realise until DS2 came along (dx with Autism quite early) and realised she was just a more able version of him!

Worth asking for assessment now if you are worried as it's a long process.

Thank you @Sonolanona - I can already relate to a few things you've said especially the seeming sociable but then needing a lot of down time after.

Mine was very sociable, almost obsessively so. Had a very intense friendship with her best friend (a boy) at nursery, which we now realise is unusual for 2 year olds (both now have ND diagnoses). Very very talkative - incessant. Probably hyperlexic. Was ahead in a lot of areas developmentally (so we did not realise there was a problem other than the frequent very intense what we thought were tantrums). She was a nightmare with transitions - would scream for an hour at nursery pick up (not drop off!) and was difficult to get to activities even if she loved the actual activity. And then leaving anywhere always prompted a tantrum. Very stubborn and determined. Very limited diet and sensory issues with clothes - another one who would prefer to be naked. In particular hated hats, shoes, socks, coats (this has not changed). Absolutely hated having hair brushed. Toilet training - had one wee accident then declared she was not going to do that again (and didn't) - but withheld poo and had to go on laxatives. We had a holiday in France when she was 2 and she did not poo for 2 weeks! Was obsessively into the Wiggles - could have been a special interest or just a normal two year old thing...!

Completely non verbal, didn't speak till she was 4.

Mine was very well spoken, almost precocious. Like a tiny, polite adult.

DD is very precocious and has continued that way well into secondary school and is predicted top grades across the board. However it's the little mundane things she can't do like go to student reception and enquire about a lost coat.

As a toddler she spoke early and we did sign language too and she could sign sentences by about 15 months. Roleplay games were either reproductions of games we had already played or the plots of books or TV shows.

Lots of her 'quirks' were easy enough to put down as being an only child, she was like a little adult and a fantastic companion, couldn't really stand other toddlers/children as they were too noisy, messy, spontaneous.

Hated hand dryers (still thinks they are the devils work).

Only particularly concerning thing was she used to bite herself if overwhelmed, so hard she left the bite imprint for upto a week.

She never had tantrums, never melted down, used to punish herself on the 'naughty' step if she thought she had done something wrong even though I had never used the naughty step as a behaviour tool.

Food wise she is a real foodie and loves a wide range of food and going to nice restaurants is her idea of heaven - BUT she struggles to eat at school as it's loud or something puts her off her food.

As a teen she struggles with anything that requires imagination and freestyle creativity, brilliantly skilled at anything she turns her hand to and picks things up quickly like art and music but the second she's asked to make something up herself she struggles, although an early reader hates novels and once she moved away from illustrated books has preferred non-fiction, poetry and play scripts.

She doesn't need that many adjustments, quiet time to chill and extra rest time scheduled into holidays and breaks away, she plays sport for the county but we might travel up the night before and stay in a Premier Inn so not too much going on at one time that type of thing.

What I would advise is watch and wait, write anything down that is quirky / unusual whether that may be being very good at something or things she struggles with and start saving for a potential diagnosis should you need it £2.5k at the moment as it's a very long wait on the NHS that way if it turns out an assessment is required in future you'll be ready, and if she grows out of the quirks as she develops you can use it to go on holiday. Most girls start to struggle when they start Secondary school. However even with a diagnosis you just get a sheet of paper with a few recommended books and waved on your merry way, it's useful for validation but in most areas there's not a lot of support unless you pay for it privately.

Sunshine on legs. Speech was delayed but mainly due to verbal dyspraxia and it was only as her speech caught up, that things like the rigid thinking became obvious - but an incredibly easy and sweet-natured toddler... actually she's still a very sweet natured and easy going pre-teen to be fair.

Quiet calm and watchful - everyone else's toddler would be running off and grabbing stuff and just generally toddler-ing but she would be by my side just taking everything in quite happily.

Obsessed about space and animals, would reel off lots of facts about them that would make us look at one another and go "wtf did she get that from?"

Very restricted diet, everything was bland, reluctant to taste new stuff.

Couldn't do imaginative play, she wasn't interested in dolls and teddy bears picnics etc, she just wanted to make stuff and do colouring and baking.

@DoNotScrapeMyDataBishes yes, my DD has the loveliest and most mature personality.

She has friends but avoids any drama, simply does not understand the need for it at all

She is never rude or disrespectful, I've never as much as had an eye-roll from her.

She will happily do any chores asked from her - but you do need to point out that X needs doing, even though X needs doing every night. She won't connect the dots and do it instinctively.

She is in year 9 and as we speak is sat revising and making revision resources for her science GCSEs because if she does it now it's less to do in the next two years (I used to teach science so we have the relevant resources).

Raising her has really been a dream and very easy. Even potty training, she just turned around one day and said "I'm too big for nappies now" and that was it, just used the toilet from then on.

Obviously there are many children with autism that have more challenging behaviour and I am very fortunate that her presents itself in such a manageable way.

Mine has a speech disorder associated with neuro-diversity (Cluttering which is in itself a neurological condition) so she was verbally unclear. I now realise that her difficulty in settling at night was part of her letting her stress out once in her 'safe space'. She was also impossible to toilet train until we found the specific motivation for her (money...) as she failed to pay attention to any of her body's needs. Enjoyed all manner of creative projects and takes everything from colouring in to cooking very seriously.

She was always very kind, generous with her sweets etc, and her photos are always of a smiling child on out days out. She was either 100% happy/content or 100% miserable. No middle ground.

She was also a bolter. Had to be held firmly near roads and needed strong well-maintained boundaries with behaviour. There were a few tantrums but I figured that was successful parenting. Children will push until they find a limit, and then test it many times!

She's pretty much the same at 13. She doesn't think she has friends, but I know she is well-liked by some children at school from the stories I hear. She has more frustrations as she moves through her teenage years and we've made efforts to give her 'caves' to retreat to. Firstly her room and now we're building a shed (with half decent insulation) as an art studio/workshop for her/her sister to retreat to as they both continue to be creative. Apparently I'm not allowed to leave any of MY creative projects in there without permission.

We did have a short-lived problem when she was 11/12 with her scratching herself when anxious. Neck, forearms or thighs until she had welts/bled - she's been referred to the school nurse team for her anxiety and has support (for anxiety, not so much for her ND at the moment, but it's working OK for now). She tends to 'freeze' when anxious and she has lockdowns rather than meltdowns - and the scratching happened then. We're working on her identifying her triggers when things happen. Something she can be oblivious to most of the time.

She's intelligent, kind, witty in a dry way I adore, inquisitive and intuitive.

Non verbal until past 3

Wow can relate to a lot of this stuff.

Is it worth getting an assessment if there is no real help available? I can buy books etc myself and we could probably stretch to a private assessment if it came to it.

Did not nap ever
Happiest in the book corner
Not great at playing with others, didn't understand what it was
Got on best with the adults

That was me, only diagnosed in my 40s.

I think earlier diagnosis would have been helpful for understanding WTF was going on in the absolute shitshow that is autistic female puberty.

Personally I let things play out until she started Secondary, she was great at Primary and wouldn't have really benefitted from any interventions, I just saved so if things did spiral, which is common I was in a position to get her assessed, we went private and it was 6weeks from my initial enquiry to having the report in my hand, compared to 4+ years via NHS.

For her it brought validation and that she wasn't losing her mind when she suddenly couldn't cope with things that weren't an issue before. She's learning how to juggle her energy needs so that she can get the most out of the day. She gets some small adjustments at school like access to a quiet room at lunch, corridor and toilet passes to access them at quiet times, when it's whole school testing she gets to go to a quieter room.

What was really, really helpful as part of her assessment is that she did the WISC cognitive testing, she scored as extremely gifted in 3/5 sections which made sense as academically she just flies but her working memory and processing were 'just' high average. This also made sense because she can do incredibly complicated maths on paper but struggles with her timetables in her head, she also struggles with remembering verbal instructions so a written list is better and when you ask her a question it often takes her 30 seconds or so to answer because shes processing. So it's this information that was really useful in talking to school about what she needs to reach her potential and not just coast, and it was really useful in adapting my own parenting and not getting annoyed at her. So instead of giving her a list of things that need doing Ill WhatsApp it to her or write it on our whiteboard.

So I would leave it a while if it's not causing ay real issues until she's a bit older.

Having the diagnosis has also been useful for future planning, she should be going to uni but it's highly likely that working whilst studying at college and uni will be too much so I'm getting myself in position that I can support her financially for longer than I may have ordinarily. Same with the world of work, to be successful it's likely she'll have to work PT on or similar so I'm preparing to support there too.

Yeah this was me too. A highly verbal, highly intelligent mini adult who didn't get on well with other children as I couldn't understand them. Shy and anxious.

I also had a lot of sensory issues. Everything was too loud or bright or itchy. Then at four I developed trichotillomania and was VERY nearly sent to a psychiatrist (GPs recommendation) but my parents said no.

I still wonder how different my life would have been if I'd been diagnosed aged 3 instead of 32.

Huge vocabulary at a very very young age, only wanting to talk to adults, constantly pushing boundaries using manipulation techniques that I would not have expected in a 2 year old.

Very unusual tone and intonation when talking. Various accents (would copy the accent of whoever she spoke to).

Meltdowns that went on for hours and hours and then followed by 6 - 8 hour sleeps

I'm in my late 40s and spend half the week speaking Yorkshire and half posh Home Counties

I mirror accents very fast without trying

This is very helpful and reassuring in a lot of ways - you’ve just described my 2 year old … May I ask do you think a diagnosis would have given more understanding and or more support. And how could your parents have supported you more - trying to prepare myself

such a helpful thread thanks op

I debated whether to have dd assessed or not (currently y2 and doing very well), but having spoken with lots of parents of girls a few years older who coped well until they really really didn’t, we have decided to go ahead with an assessment. My thinking is that having that piece of the puzzle means we can move faster with interventions/ access additional support quicker if needed. I have been parenting her like she is autistic for years now, so won’t make a difference at home, but I think it will at school in terms of how any issues are handled.

in our area it is a 3 year wait for assessment if you go via NHS. We are going private, which is 3-6months - much better than NHS but still a long time if you have a child in crisis.

I will say that while I always suspected neurodiversity, dd’s presentation changed over the years with some of the suspected signals mellowing, while others became more pronounced. There is less obvious sensory sensitivity, for example, but social communication issues have become more pronounced as her peers develop.

dd did very well in nursery, but the transition to school was tough and really blindsided us all. She really couldn’t cope with the extra demands and it was sensory overload in a small class with 31 children. We were able to move to a private school with a calmer environment and really good reputation for pastoral care and Sen support, and it was like flipping a switch - really thriving now. From speaking with other parents of autistic girls I know that this may not be enough as academic demands increase (she is academically very able, but struggles with external demands / needs downtime), and also as the social landscape becomes more complex. I am hopeful that a proactive approach will help us navigate some of the complexity.

@PivotPivotmakingmargaritas I was bullied a lot throughout school and was always told I needed to speak up and be more confident instead of being accepted for the autistic person I am. I feel like if I'd had a childhood diagnosis and greater understanding from my teachers and peers then perhaps I'd have become the confident person (a process that took a lot of time and space) I am now a lot more quickly.

Thank you for all these posts. I am finding them extremely useful- in fact I recognise myself in much of them as well as my daughter.

Can anyone recommend any good reading material?

Our ASD boy was super chatty and nerdy. I can only describe our ASD girl as sometimes feeling like you were talking to her through a window. She was typically non-responsive and in a world of her own, building high towers out of bricks. She had typical patterns of behaviour including spinning, tiptoes, speech delay and so on.

It has become less clear over time. She has some words now and meet eyes, whereas before this was clearly uncomfortable for her.

We love her so much, but she unquestionably presented as classically autistic.

Hi x you could have described my daughter x she is only 18 months and no other concerns apart from toe walking and the fact that she seems very shy around other kids but she is very sociable with my DH and I . Have you got any updates? ☺️

Hi could you describe hyperlexiaand unusual language in your DD ?

My dd has many of these in a very mild way eg 2 on a scale of 1 to 10.
Won't spontaneously do her one small job in house without prompting.
Very bright mild mannered almost too much.
Very mild clothing sensitivity but only on obvious things never pronounced.
Very very mild food dislikes eg mushroom and mash.