Parents of girls diagnosed late/r with ASD, what were they like at 7/8/9?

[RubaiyatOfAnyone]

I read a lot here that girls present differently to boys, and of course i’ve googled and seen a lot of quite extreme examples, but i wondered if anyone could give any examples of things that (at the time or later in retrospect) were earlier signifiers?

DD has been referred for diagnosis at 11, we had the first suggestions she might be autistic since she was 10.

In some areas she is more obviously/stereotypically autistic. She gets very anxious and dwells on concerns, has issues with loud noises and busy environments, and struggles with sudden changes to her routine. She sees a lot of things as black and white, and I can see there are some social nuances she just doesn't get. She has obsessive interests that might only last a few days, but boy are they obsessive while she is in the middle of them. She has always had a habit of repeating parts of a sentence several times while she waits for her brain to catch up. School have said her pro-social score is low, though that isn't something we have seen much, and she can struggle with eye contact when she is overwhelmed. More recently we have had a few shutdowns, which have cemented for us that the suggested diagnosis is probably right - you can see how she sometimes gets to overwhelmed by the noise in her brain that she just switches herself off for ten minutes. She also stims - hand wringing and flapping when she's very stressed, or more quietly just popping joints.

However, she doesn't have a huge amount of the more stereotypical traits - no sensory issues, eats anything and everything, no obviously repetitive behaviours, no real sleep issue etc. Has plenty of friends and makes new friends easily. While she would be thrown/upset if she turned up to a class and found she'd been moved table, she has never needed a routine and can be easily pulled away from one task and set off doing a different one.

With hindsight, she was always an enormously "quirky" child who had a very formal vocabulary and seemed to live in her own world - not daydreaming, just (to quote Betty Draper) she very much marched to the beat of her own drum.

DD says the more she reads and learns about autism, the more it resonates with what is going on in her head. But it isn't always apparent, she masks spectacularly well a lot of time, and so the issues we see now quite obviously relate to the exhaustion of masking for so many years and not knowing who or how to copy now all the girls she knows are becoming such individual personalities. (I've been told girls can mask very well when they are younger because there is a more obvious 'basic' personality of a 7yo girl to copy, for example.)

The diagnosis makes a huge amount of sense and even without the formal diagnosis, all the teachers we've met at her new secondary school say she very much is autistic, it's just sort of quieter, and harder to explain , than some other presentations.

Quiet at school, no friends and would often be alone at breaktimes. Good behaviour for GPs and her dad when he was home. I know now she was masking.

Would meltdown on the way home from school. Lots of meltdowns at home if something didn't go her way, would refuse to get dressed etc. Very limited with eating. Hated having hair brushed. Loved being out in nature. Hated fiction books. Easily overwhelmed in supermarkets etc. Would get annoyed with siblings if they weren't playing a game properly. Hated cuddles. Would get me to talk for her if asked a question by an adult.

Probably loads more! I remember being totally overwhelmed by her behaviour. I knew there was something different about her but no idea about autism presentation in girls until much later.

When I was an autistic 7-9 yr old I was

• excelling academically (just been put up a year) but marked socially for this. Seen as quiet and polite at school, chatty at home. Generally accepted into the outskirts of female friendship groups in class/clubs etc but had 1-3 particular friends at any one point.
• trying to collect all the Brownie badges
• collecting china cats, Sylvanians and LEGO (I played with the LEGO but had to keep it correctly in sets, with the Sylvanians at least half the fun was ticking the sets off on my poster although I did make them houses etc). The china cats were "so that when I am an adult people who don't know what to buy me as a present don't have to buy me bubble bath that I don't want, as they can just get me a china cat instead".
• rolling special interests including Norse mythology, penguins and Superman (I won a journalism competition and had a brief phase of thinking that I could follow the life plan of being a mild-mannered journalist by day and reverting to my true alien nature at night).
• touched textures wherever I went
• said the middle letter of the names of colours when I saw the colour (not all the time, but quite a lot)
• wore a child's satchel to school over my uniform so that I could keep my smaller collections (pencil toppers with complex personalities and social life etc) on me and also chew the strap. I regularly chewed right through the strap and had to have it replaced.

Diagnosed at 10.

Reading for many hours a day
Intelligent
Funny
No tantrums or melt downs
Quirky clothes, no apparent regard for what people think (good for her!)
Facial tics, raising eyebrows and jaw and blinking and clearing throat
Bland food
Difficulty with manners or seeing any point to them

Oh and collections of hundreds of things found in the street.
Lots of Minecraft

Not sure if that's all kids though!

Sorry also

No eye contact
Fantasy worlds that she talked about obsessively

DD2 was a lovely girl, sunny and smiley, popular at school, nice group of friends. Always found reading/concentrating on reading a book with me more tricky than DD1, but hard to compare as DD1 was way ahead of her age and I just though DD2 was more normal/average ability. Used to sit down with her to help encourage her to do homework, but if anything this was more of an issue with DD1 who went through a stage of worrying about getting things wrong and would get upset. Never really thought of ADHD even let alone ASD, other than the concentration issue with some tasks but it didn't seem severe. Always got good school reports. Never liked writing stories or any long bits of writing though but there was not really any concern about her progress. Really shone at sport.

Hardly missed any school, very good attendance...until 2020, end of Y6 after school closure and starting secondary school. Initially thought it was anxiety due to the pandemic/poor transition to secondary and also got possible physical sources of stomach aches checked out by GP.

Still going on now, she was officially diagnosed with ADHD (both kinds) ASD and anxiety last year. Propanolol and Concerta have helped but attendance sis still poor. She has had low mood and panic attacks about school but is much better mentally now even if her attendance isn't great- and pretty lovely sunny and chatty still, especially for a 15 year old! The next thing is to try a bit of sertraline to help with anxious thoughts.

Mine was spirited, no awareness of social norms (sharing, taking turns, manners - still the case now) she still doesn't sleep all night in her own bed at 11. Incredibly single minded. Determined. Bossy/ a good leader, depending on how you look at it. No empathy. 7/8 was less obviously different to others her age as it could have just been developmental. But now it's more obvious as people expect more of her.

Yes, I guess DD2 has rather a tendency to disregard social norms at times. And is normally agreeable but is also the most stubborn child on the planet if she decided something wasn't a good idea. I just thought she was my nice little weirdy Aquarian rather than having any particular diagnosis, for a good 11/12 years anyway🙂

I don't have an ASD daughter, but I am one, and I'm also TTC so want to be prepared for a child with autism. Genetics and all that jazz.

A lot of your girls seem to hit the wall and masking seems to become more difficult at around the start at secondary school.

in an ideal world, what would be the solution to this? Smaller schools? Private schools?

How do you think your girls will get on in college/uni/work?

I can only go off my own experience as a child, and not as a parent, so I'm genuinely interested in what we can do. Because as a kid, I had no idea the anxiety, ocd and difficulty with friends was due to ASD.

I was very worried about secondary but my dd thrives there. I think this is because she found her tribe. She is doing well at college now. It has been very unremarkable, no stress or anxiety. I'm very relieved.

I'm not sure why it worked other than finding good quirky friends, no pressure at home. A school where difference seems to be genuinely celebrated

She has declared herself non binary, some on MN would say this is a failing of mine or something! It is very common in autistic girls to say they are trans, but that's another topic!

@overthinkersanonnymus I think had DD been able to go to the academically selective girls school she got into she would have largely been fine as it's the school environment she struggles with. The girls school had 250 girls in the entire school and classes of 20 whereas hers has 2000 and classes of 32. Academically she hits all the top grades but would probably do better with more students at her level to bounce off. And the busy corridors and misbehaviour of other students (often because of their own challenges) is a big issue. However the girls school would have required much longer days and I suspect if she had managed, then we would not have gone for assessment so she may have struggled later in life.

I expect she'll be fine at uni, providing she has her own space however I don't think shell manage to work at the same type so I'm trying to climb the career ladder so I can support her as much as possible.

In the world of work I expect she'll be more than capable of living independently but will probably work part-time or compressed hours possibly with a Wednesday off to recharge. So again, I'm expecting I may need to cover that extra day of lost earnings to support her. We are a way off that though so we'll see but I am forward planning in case she needs financial support into adult hood

My DS autism presented in more of a ‘girl’ way (for lack of a better word) and he has also unravelled since starting secondary. The mainstream system needs an overhaul.

@pitsoffashion I think it's much more likely that rather than male/female autism that it is (male)Autism shown more externally with meltdowns and physical reactions and (girls) Autism shown more internally with shutdowns. And I think alot of quieter boys along with girls as a whole are missed.

An ideal world is that all children are screened, including the ability to see below the ‘mask’

They are then channelled into ASD school according to their level of impairment. Some make it through mainstream but a lot don’t. The majority of secondary long term absence is due to SEND.

My daughter is choosing her A levels according to jobs where she can work in her own.

Gender non- conforming re clothes and hair. Would only wear a very small range of very comfortable clothing - preferred school uniform.
Hyper-focus re interests and at school - very academic and would get her head down and ignore all distractions around her.
Would get upset if things didn’t follow the expected plan but masked all this at school - only a very occasional outburst that I now know was a meltdown.
Found relationships difficult but we thought this was because she wasn’t a ‘girly girl’ and also her interests were more intellectual than other children’s.
Didn't like hand-dryers and showers as a younger child but coped with them until secondary.

Like many others, it all fell apart at secondary school, especially regarding friendships. Also, she has said that she didn’t realise she had so many sensory sensitivities until her diagnosis at 13 - she had no idea that everyone else didn’t have the same reactions and feelings. One of the reasons she wasn’t diagnosed earlier is that we, without realising, had a very autism-friendly household and also, she did huge amounts of exercise which helped her regulate. As others have said, the diagnostic criteria were based on some very stereotypical behaviour and that people with ‘quieter’ presentations have often been undiagnosed. I certainly know many adults who have only become aware of their traits after their children’s diagnoses.

I hope you don't mind me gatecrashing this thread but I just wanted to say a thank you to all the posters who have responded and replied. My youngest ds is currently under the neurodevelopment team awaiting diagnoses however as I read more and more into ND behaviours and presentation I feel that my eldest is quietly ticking boxes and this thread has gave me some light bulb moments ( not sure if that's the right word?? The gp shook my concerns off when I asked for a referral as he makes good eye contact and is doing very well in school )

He's almost 9, very, very rule oriented ie we collect him from school at 3:30 and he will not speak to any of his class friends once he leaves that classroom door as school finishes at 3:30 and he is "no longer required to socialise with them" (his words - I used to be very embarrassed and apologise to other parents as he would just blank the other kids). We have to walk the same route out of school & home, we cannot take a short cut or nip to the corner shop for milk. Acitivity dislikes holidays / days out / change in routine- you can't be spontaneous otherwise lots of angry outbursts, crying on the floor. I struggled terribly with him as a toddler but he seemed to thrive with the routine & familiarity of school. He is happy being at home and going to school or going to the war museum with lots of prep & forwarning (he's had a fascination with war memorabilia since around 4 years of age) his other interest is collecting those lucky cats with the moving arm - we have a house full!
He's an avid reader and is excelling educationally however dislikes his class friends for chit chatting, struggles with breaktimes as he has spoken up from year 1 that he doesn't understand why they need to run around when they could get their work done instead. He wears ear defenders during mealtimes as he doesn't like the sounds of chewing, we've tried to drill politeness into him but manners are something he doesn't understand. Still struggles to sleep (I lie with him) and wakes early at 5am. Won't wear socks/ clothing with seams, his school jumper and has never worn a coat. Is managing now with hair cuts and will reluctantly wash his hair after he read a book on diseases. He constantly clicks the joints In his fingers.

Should I push for another referal for him?

Following with interest!

@Theantsgomarchingtwo yes absolutely I think you should from what you've written!

Age 7-8 was when my DD started really growing away from classmates in terms of interests, and expressing this.

She spoke early and often, as a toddler she could answer our careful explanations of what she had done wrong and it was a while before I understood that she didn't understand these, rather she understood how to answer us. Once she was at school she was a voracious reader.

Age 9 she started boarding at a choirschool (her choice) - the structure suited her such that when we were looking at senior schools for 13+ the local selective girls options just didn't feel right to her, she needed to continue boarding and wanted the co-ed option. (thank goodness for bursaries!) She actually found the school transition very difficult which surprised me at the time. However after one difficult term with her getting used to her new routine things settled fairly well. Until at least her GCSE year she was able to separate school was for work and home was for rest and recreation. In her first year at senior school, they shuffled the dorms regularly but recognised she needed to stay put and have her room-mates change rather than have to move, they were able to prioritise her for a single room earlier than they usually would which also helped.

Sleep - yes, terrible sleeper from the start, still has problems getting to sleep but strategies to manage this.

Sensory stuff - looking back there were issues with food textures from weaning, clothes somewhat, but as others have said we were much more aware of the sensory issues from 11 onwards as she started to be able to explain them to us. 11/12 was when we started seriously exploring ASD - when I first mentioned it to her as a "perhaps", she went away and read up ++ and found that immediately helpful. She was at her new school when diagnosed - I found it interesting that the boarding mistress and form tutor had absolutely no doubts within mere weeks of meeting her. The biggest benefit of the diagnosis was that it gave her permission to be different rather than constantly struggling to fit in / work out what she "should" be doing or be like. Time out is her biggest need when stuff gets overwhelming. Yes to the need for lots of exercise - lockdown was interesting as we both knew by then she had to be able to get out every day, but she is also a rule follower and I did quite a lot of explaining to bring her around.

She's now at uni and seems to be thriving. A super gap year job overseas massively helped her, I feel we've been very lucky.

I recognise DD who is now not going in to y7 school at all in every one of your posts. Accidentally ASD friendly home here too. No idea about ASD until some sensory stuff (wet, cold, shoes, hair brushing, limited range of bland beige food, love of extreme taste like salty and sharp, hand driers) became apparent for me as forming a picture aged 10. Diagnosis at 11,of ASD, ADHD, dyslexia dyspraxia etc. very very anxious. So anxious wouldnt sleep alone still can’t. Can’t manage sleepovers. no chance of accepting being babysat by anyone.

Love of animals. Collects sets. Odd combination of messy (can’t clear up after herself or organise) then very very neat and tidy (school bag, perfectionist presentation in written work). Loves babies and adults can’t bear toddlers and kids. Desperate to avoid boys of her age.

Dread of deadlines or transitions. I suspect PDA traits. Any kind of expectations, pressure unacceptable. Slow processing so always bang on average at school because of reading and writing despite ability way above age shown verbally. Masking desperately at school causing falling asleep on way home. Has never really had a friend her age apart from another girl with autism.

Love language is to come and talk at you about her interests. You just need to drop everything and listen. DD can’t say sorry or accept responsibility for things she does wrong which can be infuriating. If I say I love you she says nothing or no. I can’t hug her.

As she gets older I am increasingly grateful that more kids weren’t possible for us financially and we never wanted more. Great need for quiet recharge and familiarity. Same exact family holiday each year. . She is great company for adults and it’s a bit grating the number of them that tell me she must be fine because she can chat to them(they don’t notice, because they’re being indulgent that it’s always all about her interests). Teachers love her.

Now we’re in crisis she won’t discuss school at all, which is very difficult but, school options are looking like tutoring EOTAS or at a push a small quiet single sex school. MS state secondary has been disastrous. There isn’t any support.

DD has hated school since the start of primary. Poor attendance has been an issue throughout. I think the physical problems each morning were all anxiety symptoms looking back. Wish I’d understood ASD and ADHD esrlier. Knowing her own diagnosis has been transformational for her and given her more self acceptance. A relief in some ways to have the diagnosis for DD as a parent. But also no help comes with it so it’s still isolating and anxiety provoking.

Mainstream destroyed mine too.

There are some very god ND schools though. Would she consider that? The one l looked round had a kid working in reception as he was too anxious to go into the actual building. So they were teaching him there. 💕he’d been there 6 months and they were hoping one day he’d be able to access the school. But no pressure on him.

That’s lovely!

At age 8/9 anxiety and perfectionist tendencies started to kick in. She would wake in the middle of the night crying about not being good enough. Nothing that ever came from us or school, quite the opposite, she was an incredibly able student.

She was very immature in some ways - still playing with dolls at age 11. On the other hand could recite all of the relevant facts about the Russian Revolution with extraordinary detail and possibly has a photographic memory.

Totally hates loud noise. Is very sensitive to smells.

Has food aversion issues.

As a baby and toddler she was extremely clingy to me and would go into complete and uncontrollable meltdown if a stranger spoke to or looked at her. She was known to cry for days when we went on holiday.

Diagnosed with ASD2 at age 13 after school intervened due to panic and anxiety. She was also diagnosed at age 16 with ADHD. Now medicated and is coping much better.

I know! So cute.

I think that’s when my school refusing Dd decided this was her place!