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?

I've not been diagnosed autistic but on a waiting list:

• Wouldn't talk at school but would at home
• Panic attacks and high anxiety
• Meltdowns but weren't really recognised as such. Used to rip up my books when angry for example
• Picking nails/scalp til they bled
• Not wanting social time with friends. Preferred to read/be with parents
• Crying a lot - very emotional and sensitive
• Often called eccentric, sensitive, weird

I should add my dd was different from birth looking back, I'm serious. The biggest thing was she didn't sleep much, hours less than books, midwife and health visitor suggested was needed. Was under paeds at 6 months for a few development issues too.

To add:

• Very fussy eater
• Phobias
• Extreme sensitivity to noise and smells
• Hated disturbance to routine

Dd 16 not diagnosed but suspected. Separation anxiety. Dd was the last child to settle at school and tears daily continued into year 1, when school created a sticker chart. Sensory issues, labels, seams on socks having to be perfect, only one school blouse and skirt were deemed ok to wear for a long period of time, wore a head scarf in year 1 and 2 for about 18 months as a security blanket… this was peak anxiety time. Got a child psychologist involved age 6 (year 1), who didn’t see autism. This helped a lot and by year 2, dd was going in, no tears as long as she could hold my hand queueing up.

Would refuse to wear the school shoes purchased as they were the wrong ones then decided as she grew to only wear boots to school, summer or winter. Will still only wear shoes to school (6th form), which are ‘approved’ by her friends. Transitions between years became easier as familiarity set in in primary. Secondary initially fine. Then not. No issues in the playground but dd was part of the gang of very popular group of kids. As a result she was unable to function in lessons for fear of doing something wrong in class. Lockdown in years 7 and 8 saved her educationally as she worked hard, completed every task set including PE unlike the overwhelming majority of her peers. Getting close to school refusal on return in year 9 and changed to private provision/

Anxiety increased and developed anorexia at the beginning of year 11. Inability to participate in assembly. Has a medical condition, where her heart stops beating and is so anxious she would rather die than seek medical assistance. Too anxious to access therapy. It is now clear dd stopped developing (again) when I had surgery - this was the 3rd surgery I had and she stopped coping so has in some respects the emotional age of an 11/12 year old.

Also has suspected pathological demand avoidance so when I say die rather than seek medical assistance, this is meant. Is very sociable. Has many, many friends. Hair has always been a major issue. As a young child, her parting straight, bunches the exact same height and correct place etc. Still the same. Has to look the most perfect. Now it is hair and make up.

Lots and lots of anxiety and masking. I asked a few people if dd is autistic. They thought not. Now I am being told by the eating disorder coach dd likely is and with PDA.

Willing to be the 'NT' one is not NT when every other female in the family is ND.

Strictly speaking, she's ND because she has dyslexia but I don't think she's autistic because she went straight through a mainstream high school with no social problems and no mental health issues associated with school or school refusal.

Diagnosed at 40. Looking back lots of signs. Sensory issues, eating same foods all the time (e.g. had to have apple sauce with everything). Didn't like people drinking from 'my' cup. Struggled with friendships. Migraines from age 2 (apparently common in autistic children). Speaking at 9 months, walking at 10 months. Forming sentences at 12 months. Potty trained very early. Incredible memory (first memories are before 12 months old). Coped well with primary school generally but didn't like being touched or my stuff being touched. Reading age about 4 years older than actual age. Secondary school was a nightmare - couldn't cope with noise, being shoved and touched in corridors, found timetable difficult to follow and keeping track of homework. Nurses office and library were my safe spaces. I find it difficult to know what to say in social situations so either don't say anything and just watch or over share information. Find it hard to maintain friendships even in
Adulthood. Lots of things blamed on being an only child, being mature for my age or being around adults so much.

DD had very few signs until she was over 10, pretty much anything before that could have been put down to anxiety, which she also has. She didn't find school or friendships a struggle until year 6 though she did have specfic issues around transitions but those seemed to centre of her anxiety, things like worrying she'd go to the wrong classroom. She started getting lots of sensory issues with sound and finding the school environment overwhelming in year 6. She still does very well academical. Early talker, zero delays.

I put her on a private waiting list just after her brother was diagnosed. I wasn't sure then, it was more of a hunch, but by the time we got to the assessment 18 months later I was. She's very self aware and she's felt like she was different since she was quite young. I could see the similarities between her and her brothers', not the same behaviours but the same motivators, the same underlying thought patterns. If her siblings hadn't been autistic and she hadn't felt that sense of difference we'd probably just be trying to work things out now in high school and even then if I didn't know much about autism I'd have put it down to something else. Kids that mask well often hit a point where their ability to mask/cope breaks and everything hits them all at once, that's what happened to DD, she barley functioned for 6 months, lost all her friends. It' was still mostly out of sight though from school and friends and family. She's slowly doing better now.

Late walking but very early speech. Completely inconsolable in new situations. Terrified of people she doesn't see often. No eye contact with people outside of immediate family. Huge noise sensitivities. Repetative play. I believe I was similar, I went through all of school too shy to say anything so struggled. But back then I was just incredibly shy. She has autistic older brother. I'm sure without that and the late walking we would just think she was very shy.

My daughter is yet to be assessed but some of the signs that stand out to me.

Rigidity around routine, to extent it would cause big meltdowns over any small change.
Poor sleeper since birth, still wakes and needs daddy in bed with her
Lots of sensory issues, needing to wash hands immediately if they get dirty
Meltdowns over clothes getting wet or dirty, only wanting to wear specific clothes otherwise meltdown
Difficulty integrating with other children
Overwhelmed in large crowded busy areas
She used to bang her head when younger also went through phase of pulling out her hair
Appears to be away in her own world alot when around other children
Extremely limited diet

Also big sensitivity to smells and doesn't really like being touched or cuddled

As a baby

Bad napper
Anxious
Cautious

Toddler
Massive tantrums that could last hours.
Extreme knowledge of dinosaurs

Primary
Steady no real issues very bright but quiet. High scores in tests etc. Was clearly masking like a pro

Secondary
Mask falling off slowly
Some
Friend issues but that did settle in year ten with a new set.
Extreme fear of vomiting than needed on going therapy
Anxious about some social issues
School avoidance
Wont speak in class
Fear of being called out
Executive function difficulties. Organising Revision difficult etc
Stomach pains
Eventually By sixth form dropped out due to burn out.

After school
Doing well. Working part time Seeing her friends. Will do most things Holidays still hard due to vomit fear but working on it
Doing a part Time course in an area of interest

We claim
Pip for her and I get carers allowance as I still have to ensure she eats washes takes meds gets to work etc due to her terrible executive function but she is super intellectually and creative with sculpture painting etc.

It's very hard work at times but I love her for her difference and her boss adores her. Also late diagnosed asd.

Yes!!! Also won't be cuddled etc. Moans if I get too close

But if she is poorly or wants attention she will ask for a back massage or foot rub

I'm like yourself, OP, at 45.
Asperger's diagnosed in mid life.
Where I grew up, no nonsense was tolerated in the most brutal way, many of my former schoolmates are battling psychological problems.
I was very good at "masking", the only way to survive.
Adults around us, mostly so called Silent Generation, were proper bastards.
Very little of that matters now, most are silent forever.

Meltdowns she didn't ever grow out of.
Shut downs where would just grunt and stim.
Does not get empathy or social cues.
Highly intelligent with very specific interests from a young age.Morphed from knowing every fact about animals to self teaching herself ancient history.Lght reading is the King James bible and Anglo saxon history, self taught Latin.
Thinking everyone else wants to know about ancient history , Latin and the Anglo saxons and sharing this information at length when they clearly don't.
Masking then meltdowns/self harming after school.
Telling us she had learnt what to say in any potential conversation that might crop up at school that day and did this everyday...doesn't everyone?

1 - nothing obvious at the time. Very precocious, very articulate, very chatty (but with adults more than peers), intense special interests, some friendship issues at school (1 or 2 intense friendships), big rages/struggles to control emotions, difficulties getting to sleep. Happier in a routine as a baby. As an early teen more severe friendship issues at school, social anxiety, depression, minor self harm. Felt different. That led us to seek help and diagnosis.

2 - a bit behind developmentally, speech difficulties, was “a runner” as a toddler, didn’t interact much with peers at nursery, meltdowns when started school. Meltdowns/hitting/scratching carried on up as she got older when it was no longer “normal” for her age. Difficulties with sleep and toileting /soiling later than would be expected. Anxiety about school and friendships, difficulty going into the classroom in the morning

Have 2 girls diagnosed with ASD and very different presentations with both. They are 9 &7 now. Younger one was noticed first - delays walking and talking were the first signs
we noticed, but looking back lots of the signs were there from birth or infant stage. She was referred for services just before her 3rd birthday. We missed all the early signs with the older girl as her communication was and is better - emotional regulation and anxiety were the main issues noticed, and this peaked around 6/7 to the point she was trying to run away from school. She has also
been diagnosed with dyscalculia and dyspraxia in the last 12 months as well as ASD as well which does not help with the anxiety. But we have come to the conclusion that most of my side of the family are neurodiverse - both my nephews have ASD as well and I strongly suspect I do as well. So strong genetic link in our family anyway.

The one sign my family reports is that I never smiled as a baby. There may have been others but for some reason they fixate on that one. My social awkwardness was noted but not seen as any real cause for concern.

I never said it did, I was talking about my own experience. I have an autistic family member who is very academically bright. But for my DD this is what led me down the route to getting her diagnosis. Autism often goes hand in hand with other conditions and disorders. She was diagnosed with development delay and sensory processing order a few years before she got her autism diagnosis. She had her intelligence tested as part of her diagnosis and it said she was average. But as a baby/ toddler she had difficulty with feeding, crawling, walking, speaking.

40% of people with dyslexia are also co-morbid with adhd/syspraxia/autism

Very advanced at reading and writing but can't count
Enjoys playing alone or being the boss of the games
Upset when rules are broken
Seams, labels and elastic irritates
Intense interests
Hair brushing hurts
Very sensitive to own and others emotions

Hi OP

my DD is 6 and was received her diagnosis at the beginning of the year.

As a baby she was late to meet all of her developmental milestones, she hated the hairdryer or hand dryer - she would become hysterical at the sound of these. She was a very easy baby who didn’t cry much.

As a toddler it became more obvious that she didn’t interact with any children, her sound sensitivity became more pronounced along with her need for structure and routine. Slow to develop speech.

By the time she started preschool it was very clear that she was very different from the other children - she preferred to play alone or just watch from the periphery. Her play was restricted and repetitive. She would cover her ears often, walk on tIp toes, finger stim, become easily overwhelmed and was extremely dependent on the adults in her classroom. It was then that the referral was made and she received her diagnosis within 6 months.

Her traits become more pronounced the older she gets.

I hope you find some peace in your late diagnosis x

Op can i ask how did you get your diagnosis without your parents input? Isn't it really difficult?

Looking back it was obvious from birth but I began to wonder when she was 2. She was diagnosed at 6 years old.

I now spend idle moments wondering if I am.

Just to add - i am sure my mum in law is autistic and she is nearly 80.

When i first met her, she was in her early 40s and married to FIL. I think she got away with passing for NT as her social life revolved around his work events.

So - when i first met her she came across as someone who was very supportive of her DH. They were always very polite to each other and there was none of that affectionate banter you get between loving couples that have been together years.

But, as i came from a family where my parents were always at each other's throats, i thought it might be normal.

When FIL died, i spent more time talking to MIL and her personality has come out more.

Here are her 'traits'

Hates surprise
Fussy eater and high anxiety over food
Writes down topics of convo beforehand before meeting friends or convo dries up
Eye contact with me is poor (this might mean she doesn't like me!)

Would hate us to turn up unannounced.
Never ever gossips. About anything.

Convo lacks reciprocal quality as she does not ask questions that follow on from the unfolding convo. It is like she follows her list of 'how are you, what have you been up to' and then goes to comments about the weather or her garden.

Her life has been one of very safe routine. She met my FIL aged 15. She will only drive 2 routes (and this has been the case since she was in her 40s!)

Playing any fun games at Christmas is impossible. Even with close family members, she gets too anxious. She never seems to be able to relax and laugh properly. She is always worried about making a faux pas.

She does have friends but sees them one at a time and always very formally arranged. Like if she sees someone every 3rd Tuesday, she would stick to that.

Inability to form or sustain friendships with peers, doesn't always understand social cues, outbursts at the most minor thing, huge anxiety under pressure (ie we exams).