Those of you with Autistic girls, how did you know?

[wulves]

I’m in my 40s and late diagnosed autistic, no hope in hell of my parents noticing anything even if autism was known in girls back then. I was just wondering what signs you saw when they were still small that made you wonder or know your daughter is autistic?

Oh - and one more thing about MIL. She does not know what to say in surprise situations.

I remember when we had a patterned carpet put down in our living room. It had previously been plain laminate.

So this was a very in your face busy pattern and no way would you not notice it as soon as you entered the room.

MIL came to our house and said nothing at all about the carpet!!! She obviously hated it but could not even say "oh, this is new"

OTOH my best friend of the time (we haven't fallen out; she just moved away) just said straight out that she hated my carpet!

And that was fine and very funny at the time as we were really close pals.

Absolutely nothing until puberty where she suffered with anxiety , depression , self harm and anorexia so we reverse engineered it and worked out these were symptoms of a cause rather than stand alone issues

We paid for a private diagnosis at 17 so she could understand herself at uni and get the support she needs .

In hindsight she had a bit of anxiety in childhood but masked so well we had no clue and no one ever flagged it up ... she is very bright but not weirdly bright and didn't stand out from her friendship group of all smart girls

2 DDs diagnosed autism in mid-late teens.
DD1
Easy baby
Didn't like being cuddled even as a child
Always quite explosive -meltdowns
Hated /could not cope with surprises. ie presents, games like pass the parcel/luck dip
Hated sand/beach
Hated the wind
Hated snow
Had a few long term close friendships
But struggled with arguments, friends moving away etc
Loved loved loved cuddly toys her bed is covered with them and still is.
Anxious and shy
Loved sylvaniain families, I thinlk this is her version of trains!
Very very fussy eater /, restricted limited foods
But academic, had friends, no concerns raised at school.
Matured slower /young for her age.
I had suspicions but DS also had some allbeit different traits but when we had initial triage appt I was told he want autistic and very chatty, made eye contact and liked cuddles( I'm pretty sure he is autistic but he's not diagnosed)
So kinda discounted getting DD assessed-I always thought school would raise it. They never did. She decided she wanted sn assessment after her sibling was diagnosed and she was thinking of university so to get support.
DD2
People pleaser
Easy baby
Socialable
Had close friends but struggled if as any friendship issues
Felt ill every Monday during term time.
Did like to control things ie if she wanted to dance with you you had to stick to her choreographed moves!
Fell apart spectacularly in secondary school
Barricaded in room
stopped talking
Stopped washing
Couldn't go to school
Become very sensitive to light/noise etc or started to articulate it.
Couldn't cope with body changes at puberty or periods at all
Exceptionally anxious.
Low mood
School suggested autism and she was diagnosed at 14-school avoidance was catalyst before that totally under the radar.

They have male cousins who were diagnosed with autism very young

I think it's because girls autism impacts them but boys autism impacts everyone including teachers.

Spend many idle moments wondering if me and DH are autistic or adhd and spotting traits in family members

At three, when meeting up with her little friend. She wanted to bring her bike. Friend was devastated she didn't have her bike (that age). She was unmoved. This was at the stage when most children are very empathetic and concerned about being kind. The other child's distress was of no interest to her.

Me again (i keep thinking of extra things!!) one clue to be found in 3 to 4 yrs is the way they play. In a former life, i was a speech language th (not specialised in autism but all SLTs are trained to analyse kids' play as symbolic (pretend) play closely aligns with language development.

For the past 25yrs though, i have been a childminder and observed hours and hours of NT kids playing.

NT kids aged 3 - if they have a toy with little figures and accessories (dolls house type - playmobil or anything like that)

And you sit back and watch - not show them what to do - they will start making a little play 'scene' by themselves. Often accompanied by chatter even if they are on their own. So they will pretend a little figure is hurt, or tired and put it to bed. Or a boisterous boy might pretend to kill some of his figures (this is normal in boys - car play and gun type play) But, whatever happens, you can observe the child pretending, making a little story totally from imagination.

ND kids either have no interest in this kind of toy or

Will start to organise it (tidying the furniture into the rooms)

Post things through the doors

You might see things that look pretend - making a figure jump off the roof, or be run over by a car, but it will end there. That will be it - more characters jump off the roof but it does not extend to anyone getting hurt, any doctor coming or any extension of the play idea.

Copying ideas they know from tv/movies - you might then hear sterotyped copied language from films.

Playing the same way over again.

If you have NT kids over to play and set them up with a toy like this - you will see and hear a difference.

Dress up and role play games (popular at 4yrs ish) are not favoured by autistic girls. NT girls generally love dress up and pretending to be the shopkeeper/nurse/mummy/princess or whatever and, by 4, they can create very long imaginative scenes with friends and no adult suggestion. You will see them embody the role of the character they are in - changing their voices and mannerisms. Pretend play is huge at 4yrs old.

My eldest dd avoided it by sticking with arts and crafts.

Youngest dd did play with dolls but it stayed simple - pushing dolly in a pram. Putting her to bed. Changing her clothes.

Neither embraced dress up role play.

Knew by 2 as she didn't speak at all. She's severely autistic though so different to most girls who are autistic, was diagnosed age 3

No daughters but I thought posters might find this interesting. Was listening to a radio program last week on eating disorders and the psychiatrist thought that around 60% of girls admitted to hospital with ED were autistic, mostly undiagnosed.

Took me until 12 (and a diagnosis at 13) to know. I have a very much younger ASD half brother (30 years!), studied for a degree in psychology a few years earlier and did a project on autism… but it still took me an age to join the dots because in my head I still thought it was mainly a boy thing or an ‘extreme’ condition.

I’m not sure what my lightbulb moment was, perhaps a growing understanding of what my brother’s experience of ASD was and realising that those traits/behaviours/stress responses had been there all the time. Maybe an article on it somewhere. Certainly a need to understand the extreme distress my DD was experiencing with the onset of puberty was a flashpoint.

That said, I also didn’t pick up on my son, 3 years younger, until he was 15 or twig to myself being ASD/ADHD until around then either. I think the issue, for girls, has been the very limited and rigid understanding of what autism actually is due to an over-reliance on outdated male-based stereotypes that still seem to pervade today. It has been a real obstruction to understanding and diagnosing girls, but I think has been an obstruction to boys and adult diagnoses.

Yep - all the female ASD/ADHD people in my family had ED’s (DD has ARFID, I would say). My mother growing up was volatile and erratic and does from her ED in her fifties - I thought she has a personality disorder/bipolar, but now am convinced she was AuDHD (and her drug addicted brother, probably the abusive, alcoholic father who abandoned her mother too)…

Sensory issues - would only wear certain pairs of socks, found labels itchy, wouldn’t wear certain things. Sensitive to noise and light.

Showed signs of intelligence from a young age. She was very bright and switched on, even as a baby, but slower than peers to reach physical milestones - rolling over, walking.

She was quite a serious, solemn child and confident talking to adults. Keen to make friends, but her peers gave her a wide berth.

She had epic meltdowns from a young age.

We're all different though! I loved role play games as a child and always wanted to dress up and use my imagination. I'm still very much autistic.

DD1, who was diagnosed as an adult. But as a child - never slept, from a newborn would sleep ten minutes and be awake all day. Learned to read at two, read absolutely anything and everything. Suffered dreadfully at secondary school, got through by having a few close friends and came into her own when she got an excellent job and met her girlfriend. I should have sussed that something was wrong somewhere, but I've got five kids and they are all so individual and different that I really thought it was just her.

As a young child (so three or four) DD1 was noticeably anxious about change and unfamiliar situations, more than we thought was typical for her age. Put that down to me having PND when she was a baby and again when her youngest sister came along when she was four.

But as she got older there were other things like being a cat (she still is aged 12), struggling with social interactions with other children. She initially plays well but then gets controlling and upset if they don't play how she wants them to.

She can be very dysregulated, especially when feeling frustrated. When we moved house when she was 10 she started having huge, violent meltdowns, which were scary for all of us (most of all her). She doesn't seem to understand emotions beyond happy or sad, and cannot tell us what she's feeling or was feeling when overwhelmed.

Her sleep is terrible, has been from about age 7. She doesn't get to sleep before midnight, and melatonin doesn't help.

She was an early and precocious talker - full sentences and big words used appropriately from a young age - and is fantastic at making connections, especially in books. She often predicts what's going to happen in stories and is correct.

ETA: Obsessions. She changes them regularly, but will be completely obsessed with a TV show or series of books or a game and talk about it incessantly. It's currently Minecraft - even before we got it for her on the computer. She researches it all the time, and plays it a lot. She can monologue about her chosen topic for hours if we let her, and doesn't notice when others aren't interested; fortunately for my sanity "Aha" is a perfectly reasonable response when she's telling me stuff so I can let her tell me things for a while without me getting too overwhelmed.

Also: we're thinking DD3 might also be autistic. Biggest sign so far (apart from some similarities with DD1) is that she does not pick up on social cues at all. She was trying to teach a friend how to play a complex board game recently, and when I came into the room her wee friend looked at me with "HELP" eyes, so I had to redirect DD3 onto something fun for both of them.

Maybe her behaviour is exemplary at school - but has overwhelm and meltdowns at home?

So much so, that neither you nor your teacher recognise the description of the child the other one knows?

Because she has been masking and focussing so hard to follow the rules at school that when she comes home, it all comes out once the lid is off?

dd2 is 16, and got her diagnosis last december.
I have wondered since she was about 8, but we are pretty tuned into autism as my godson and 2 nephews are autistic.

dd was at a super selective grammare school, she is academically able and very much wants to do well, and achieve, but could not do any homework at home and there were loads of mental helath things as a teen complicated by covid.

When we sat down and did the assessment forms I realised how many clues there had been as a kid. So things from her younger years:

transition - this was a big one, she struggled to go through the door into school every day, but once she was there she was fine, I had to peel her off and hand her crying and shouting over, and literally once she was inside and hanging her coat, she was fine.
Unknown events, she had a meltdown before every birthday party (that she had begged to go to) so I used to say - let's just go and drop the present off and leave, as soon as she got there and saw everyone she would say - bye mum you can go now.
meltdowns, violent emotional meltdowns that went on for ages and went on until she was 13 /14.
she used to explain jokes to us when she got them, even though we had all got them.
play - she had LOADS of toys, but she played in pretty rigid ways with them and it was a disaster when friends came round because they were not allowed to play with them 'wrong'
All her possessions and toys laid out in her room, and I wasn't allowed to move them, getting them tidied up so I oculd clean was horrendous, as she got really upset
frendships, the older she got the more obvious it was that she struggled with friendships and had very poor empathy for how the other person feels.
Ironically now she can have excellent empathy for someone, if she agrees with them, but she CANNOT see the other point of view.
sensory issues, but not extreme, she didn't like certain clothes or socks, but I'm pretty laid back so just let her wear what she wanted, and didn't realise it was an 'issue'
masking, she comes home from school and collapses really. Cannot do school stuff at home. Is often exhausted from coping at school all day.

I can believe this, and most of the girls I referred to CAMHS for eating disorder management in the last few years were identified as possibly being autistic and assessment by the appropriate service was arranged.

One of my daughters (not the one known to be autistic) was hospitalised with a severe restrictive eating disorder in her teens. While she was an inpatient she was seen by a psychologist who told us that she was autistic and that despite the fact that she was intelligent, articulate and sociable, her emotional reasoning and empathy were at toddler level. But at the time she was assessed she was still very underweight and irrational, there had been nothing to suggest that she was autistic before she became unwell, and when she had restored her weight and had been eating enough for several months she no longer presented as autistic.

That's really interesting.

My neice had an ED in covid, in her mid teens.
My DB and SIL were told that until they had reached 80% of their target body weight, her brain was not able ti function as it should, and so talking therapy etc really only kicked in to be effective once she had hit that weight.
My brother said it was like seeing her come out of a fog as she got to that point, and then they were able to have rational conversations with her, in a way that was not possible earlier. I don't think I'm describing that very well, but I was amazed at the link between the brain function and weight.

Having said that, I think she is very much on the spectrum, but not diagnosed.

One of my daughters had ferocious meltdowns and huge sensory issues. Whilst reading about signs of autism in girls, I realised my other daughter was also autistic in a completely different way (just like me).

Just been diagnosed at 50!

Not really accurate. Children dont really start to develop empathy until much older.

Call it what you will, most children that age look to comfort another child who is crying. It might be technically empathy but they aren't unloved by the distress of a peer. Nursery were able to demonstrate that.

Well son now almost 30 had been diagnosed before .he was three, dd came along when he was 8. I swore I wouldn't look too hard and enjoy her. I tried, I had a few niggles when she was a baby, she didn't smile much, she had seemingly no special attachment to me and her first words weren't what you'd expect. At 13 months over the course of a few days she lost all her skills so she no longer smiled, waved, clapped, laughed or said the few words she had. I knew then she was autistic even though son never experienced a loss of skills. She was diagnosed the week of her second birthday.
I suppose the things that I would have noticed had she not already been diagnosed would be she is overly passive, she has never misbehaved in her life, as a tot she had a large vocabulary but her speech was a mish mash of dialects and accents as she picked up words and phrases and reproduced them exactly how she heard them, she is very emapthetic, she feels everything deeply, she cries easily, she is easily overwhelmed and needs a lot of rest to manage even minor demands.

Interesting! Of my 5 dc, all ND, none has imagination for play. Both my dd have no mind's eye and cannot imagine anything really at all. Both very practical and logical.

My ds do have a mind's eye but never did pretend play - one ds watched the wheels of his toy cars. One preferred push button computer toys.
The other was run around, very inattentive (adhd there too)

Play is definitely an aspect that is affected in autism so i am interested in your experience; thanks for posting.

@cryinglaughing

That food one used to drive me mad till I learned not to buy too much of something cos that would be the exact point they wouldn't eat it again!

My DD is very imaginative and can get lost in role play sometimes. This is a common feature of PDA that can confuse people when thinking about "typical" ASD.