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?

Hopeful bump for the daytime crowd?

Sorry have nothing to add but I'm very curious to the answers too!

Also watching with interest, as I’m suspecting DD (nearly 6) has ADHD/ASD

Mine was ‘difficult’

Tantrums and awkwardness. Would cry when told we were going out. Angelic at school. Wouldn’t sleep alone until 13. Has severe anxiety about dress up days. Didn’t like loud noises. Very sensitive to everything. Sanctions made no difference ( oh the joys of wrestling to get her in the naughty step😞) Raised/ firm voices made her cry.

Diagnosed at 16. We thought it was just her personality. Crashed out of A levels with burnout.

Very similar experiences with my DD. Extremely noise sensitive, hardly ever slept (even as a baby), never wanted to go to friends' houses, didn't like school (although fairly academic), wanted to be home all of the time. Big mood swings, which are continuing... But she really is a joy - gentle, kind, affectionate and great company. Diagnosed as a YA.

DD2 was diagnosed at 11. She's always made eye contact but quite briefly, then looks away. She loved school at 7-9, started to struggle later, around age 10. There were definite social challenges - she had 1 or 2 close friends and made friends in the park quite often but it kind of seemed like she wasn't on the same level as other children sometimes, they found her a bit weird. She would just approach someone and start talking about whatever was on her mind. She didn't always know when it was her turn to talk in a conversation. She didn't have any obsessions or special interests and she was very flexible about routine, going to new places etc. But she didn't always like to try something unless she knew she could do it. She was always on the move and used to do laps of the living room whilst talking to us at length about a topic of interest. She didn't eat with a knife and fork and had a very restricted diet. She was highly intelligent and had a high reading age but actually preferred books for her age or younger like the wimpy kid. If she was excited she would jump up and down and flap her hands, but only at home, not at school or in other settings. She struggled with her swimming teacher who was 'scary' and we stopped lessons around this time but she was very attached to her class teacher in school. She enjoyed lockdown and was quite content at home but also happy to go back and upset about the second lockdown. She was very sensitive to criticism or teasing (she doesn't understand teasing and just thinks the person is being mean). She could be obsessive about sweet food and would steal cakes and sweets from the cupboard if she had the opportunity and hide the wrappers. She cut her own hair and wrote on the walls and cut holes in her clothes.

Mainly friendship problems at that age. She had an unusual gait, I had to remove labels from clothes and she hated the noise of hand driers. She also re-watched the same film on repeat after school. Didn't think anything of it...tummy aches started in year 5 and I had trouble getting her to school.
Things deteriorated and she stopped going to school completely in year 9. She had a savage mental breakdown which blew all our lives apart.

I've just deleted some upsetting details I wrote as you didn't ask for them and it could be inappropriate to hear them just now.

You have to fight. Fight the ignorance of professionals who should know better and the judgement of friends and family.
We had to fight when we were on our knees with no fight left to give and in fact when it was far too late.

We had no idea at all there was anything to be concerned about about DD at that age so I don't suppose we would have or could have done anything different. My main regrets are around later on not advocating for her quickly enough when services (camhs) were crap.

The only thing I can think back to is she had vocal tics. Really no other clues, then high school and BOOM.

My DD - seemed completely NT to me in primary. Diagnosed at 13 (high functioning), which apparently a common age as a) girls are really good at masking, b) the 'typical' autism traits apply to boys not girls, and c) adolescence is a key point where an autistic child finds they can't mask any longer, and has a breakdown.

I suppose looking back: tantrums (more so than her brother), fussy around food, very strong willed (in terms of what she would and wouldn't do), and struggled in some big, noisy settings. But nothing that made me think of autism.

That said I've only just been diagnosed myself, as the things they said made my daughter ASD applied also to me. So it's all a bit mind-blowing really! I just thought I was an introvert who was a bit shit with people.

If you want to take it further, make sure you have her tested by someone who understands how it presents differently in women and girls. The 'usual' tests like I say were created by looking at how it presents in boys; autistic girls are very, very different.

Yeah the strong will😖And the persistence😭

Shes 17 now and just delightful. Still stressed about new things. Got an EHCP and about to restart her A levels at an ASD 6th form.

Mainstream A levels have honestly given her PTSD. She stopped going in April last year and started crying about a certain teacher last night. 10 months later. 😡

An absolute dream, high achiever at school, no challenging behaviour (although would bite herself if overwhelmed), strong sense of injustice and hated that other children just couldn't behave, didn't like lifts or hand dryers. Took part in dance, singing, drama, bushcraft activities, generally very busy. Was quirky but I put that down as being an only child and spending lots of time with adults, was never fussed about not seeing other children, was far more independent at 8 than she is now at 14 as secondary has done a number on her. Has had one constant friend since 3 years old who tends to go out and gather other friends for their group.

I knew she'd struggle with a loud busy mainstream secondary s we applied for a private selective girls school which she got into but we didn't get a scholarship as they were prioritising supporting girls already at the school s it was during COVID.

She started Secondary and as expected really struggled with the school environment her MH started to spiral and she simply wasn't coping and completely shut down over Christmas.

I had previously worked at a secondary and had experience with autistic girls and it had always been on my radar as a possibility as two other male family members exhibit traits that are highly likely to be autistic so I had save up over 4 years with a Help2Save account incase she needed assessing. I got in touch with a clinic specialising in girls and got her diagnosed within 6 weeks compared to 4 year NHS wait. Turns out she's twice exceptional so autistic and extremely gifted and it's highly likely her ability disguised her disability at Primary.

I don't think it would have been worth while getting assessed earlier as her traits were not causing significant challenges in her day-to-day life so she probably wouldn't have received the diagnosis at Primary. Like many it was the start of Secondary that overwhelmed her.

DD loves rules and knowing where she stands so she is very easy to parent even as a teen. She is very logical and if a rule makes sense like - putting her phone in the kitchen overnight so she isn't disturbed she is 100% happy with that. She still can't stand other people who cant follow rules and misbehave at school.

Year 5 and 6

Friendship issues started. Couldn't keep a friend very long without them ditching her for someone else.

Never got invited to people's Houses more than once. Very noisy and fizzy when she was happy. All arms and legs and hair jumping around.

Tummy aches on a Sunday night and before school. I didn't realise that was anxiety.

Vocal tics when excited. Squeaks and squeals. Friends asking why she was being weird.

Unable to do homework. Meltdowns that would have her retching and crying.

Obsession with her hobby (making jewellery) would talk about it, do it, all the time.

Couldn't hold a 2 way conversation. She could wait her turn to speak, but it likely wasn't about what the other person was talking about. No chit chat.

Anger. Lots of anger at home in Y6, directed at her dad and herself. That's the thing that made me realise there was something a little bit different between her and other girls and got her assessed and she was diagnosed.

Y7, so 11 years old now

Very anxious, still gets used and ditched by friends. Still fizzy and excitable at home. Still has vocal tics when she's excited, but apologises for them now, even at home 🙁

Doesn't enjoy school. Falls asleep on the sofa after school every day because she's exhausted from masking so hard and trying to fit in.

Obsession with her appearance, needing it to be perfect or she cant leave the house. But that seems to have relaxed a bit recently 🤞

Really poor sleep from birth, feedback from that she was very bright but did not want to engage in class discussions, peripheral in friendship groups and really struggled once hit Y5. Got worse in secondary school, started school refusing and getting very anxious but would happily do all her schoolwork at home. Then COVID happened and I think that saved us the complete breakdown others have faced as being at home studying suited her. Diagnosed at 15.

Some of the delay in diagnosis was also, in retrospect, because I am a single parent and likely ASD too, so home was very ND friendly, even if I didn't realise. I kind of knew she was not quite like the other kids, but I wasn't like the other parents so I thought it was just a personality/family thing.

• Difficulty maintaining friendships - good friendships for a while that would then end in a sudden fallout.
• Couldn't tolerate the noise of hand dryers or toilets flushing.
• Slept OK but needed someone next to her to fall asleep.
• Awful at sharing or taking turns
• Overbearing
• Not academic but happy at Primary School
• Labels needed to be cut out of clothes.
• Very poor concentration and needed to always be on their move.
• Impulsive and low risk awareness

At age 9 the official diagnosis was ADHD. At age 13 a lot of the ADHD symptoms declined and the ASD symptoms just absolutely multiplied.

• Very restricted diet
• Stimming (lots of it)
• Unable to sleep at all
• Absolutely not coping socially or academically at Secondary School
• Emotional based school avoidance
• It's become clear that socially she misinterprets so much information and situations. Debates are perceived as arguments, jokes as insults etc.
• Body and gender dysphoria 😥

The teenage ASD years have been awful.

In hindsight she should not have been in mainstream school but she masked well until it all fell apart and she went into burnout.

My eldest at that age was on the ‘gifted and talented ‘ register at primary school and excelling massively in all areas except maths where she couldn’t do it at all. No real friends except one who had English as a second language (in hindsight I think they got on as then dds difficulties with social interaction were not as noticeable due to some language barriers)

Younger dd had more significant issues around friendships (eldest was indifferent as always said she hated everyone anyway) but younger dd frequently in tears as couldn’t make friends / keep friends and desperately wanted friends .

Issues for both with eating at school (noise and smells)

Both started with obsessions around age 8

The big problems came with the transition to secondary

Dd on the pathway for assessment now at age 10 (Y5). Only became more obvious at school since starting Y5 due to changes in friendships etc. She sounds very similar to everyone else's girls who have commented.

• Bad sleeper since birth
• Sensory issues (clothing, noise)
• Very academic, has no issues with school work
• Highly anxious
• Fussy eater
• A couple of niche interests
• Struggles a bit with physical things such as tying shoelaces, catching and throwing a ball in PE etc
• Terrified of escalators, lifts, heights, water
• Very self aware and perceptive of what others are doing
• Does give eye contact and has good friendships, but is finding it difficult now friendships seem to be changing at school this year

I could go on forever!

It's really sad to hear of so many struggles once hitting secondary school. I am dreading it to be honest

Yes! DD is a single child and she's just like me. I didn't realise just how much I made things more Autism friendly at home, simply because I find those things uncomfortable or unbearable. DH is very laid back and used to my ways so he didn't see anything unusual either.

What Floopani said. Almost to the letter.

@Youcanpayit Yes, the Ed Psych said DD had probably coped so well as she is an only and I'm a single parent so our day to day life is automatically set around her. When we go out she doesn't like lifts so we automatically go up the stairs - couldn't do that if I had another in a pushchair, or spontaneous things that siblings need like drinks / food / first aid when scrapping a knee which disrupt the planned activity. Our home is very quiet too which means she always been able to recharge

I'm not a parent but I have ASD and am female, if this helps you at all.
Age 7-9 I was:

A daydreamer, very off in my own little world.
A high achiever and very academic but hated school and had lots of stomach aches (anxiety) .
Enjoyed small world play by myself in my room.
Didn't like dressing up.
Had a hard time making friends.
Spoke in a slightly unusual way - used old fashioned words and phrases, formal speech in informal situations, etc.
Had difficulty recognising when I needed a wee.
Very messy room that I never got round to tidying, but would spend hours arranging my teddies in neat little rows.
Very sensitive.
Didn't naturally pick up social communication skills.

Both my DSs are currently waiting for ASD assessment. My main concern is that they get diagnosed (if they do have ASD) before they start secondary. I found secondary school particularly tough because the social skills and awareness you need to fit in really ramp up and it gets harder and harder to mask.

Ages 7 and 8 was when she was taking school work and perfectionism to the absolute extreme. She is highly intelligent so she would convince teachers to let her do alternate projects and then make them so over-the-top elaborate that she would melt down from the pressure of the demands she placed on herself.

extreme picky eating throughout

difficulty sleeping

hyperlexia.

The ability to debate adults and find the loopholes in every argument.

An absolute dream of a child but with a stubborn streak. Very academic and creative but in her own world. Very curious and interested in exploring the world but not particularly interested in making friends. Always truthful and baffled as to why anyone would ever be unkind. Also no interest in competition of any sort. She attains high grades without any compulsion to prove herself. All in all a beautiful soul who at 13, knows more about most things than me. No stimming, sleep issues, food fussiness or sensory symptoms.

Very similar to what others have said:

Difficulty sleeping from birth, had to have one of us sitting with her while she went to sleep (which took hours)
Sensory issues - cutting labels out, hates socks/shoes/hats/gloves
Tantrums - what we now know were meltdowns. Extreme, long, nothing we could do to help. Sometimes hit herself during these. Seemingly set off for no reason/ tiny reason, but actually a build up of overwhelm. Absolutely had to explode to 'reset'
Extremely stubborn/determined/nothing will divert her from something she wants to do
Extreme fussiness over food but obsessed with sweet food - almost like an addiction
Never stopped talking, but mainly 'at' us, focussed on her interests, rather than with us
Series of special interests - animals/ particular films or bands or books
Very strong sense of justice
Appeared to give eye contact, but if examined closely this was mainly looking to one side/ nose and/ or was v brief. Not many gestures.
Very academic, strong reader/ writer but preferred books and TV shows for younger children. Watched these on repeat
Struggled with other children not following rules in school
Could not cope with being teased at all
Very excitable over things she enjoyed
Never stopped moving, lots of running around in circles, handstands, jumping, bouncing etc. Struggled to sit still to eat meals/watch TV
Nail biting
Lots of repeating of phrases/noises/lines from songs. Constantly had to be making noise (this very irritating!)
Lots of friends, but struggled to understand complexities of friendships and interests are younger than friends, found others moving on difficult (eg at 9 preferred to still play pretend games, friends wanted to talk about boys). Got quite possessive over best friend/ upset if she played with anyone else
Quite often picked up/ copied gestures or expressions from friends
Strong preference for things to be done the same way all the time. Really disliked change.
Need to know what was happening next/ what to expect. Meltdown if things not as expected.
Difficulty with transitions - getting dressed/ going to bed/ leaving house/ leaving parties/friends' houses
Struggled to identify emotions/ discuss feelings. Could not say 'sorry' or 'I love you'
Demand avoidant - eg hated being told to go for a wee before leaving the house
Struggled to tell when cold/hot/needed a wee/felt ill etc
Used old fashioned language/phrases picked up from books
Perfectionism
Messy room but would spend hours setting up dolls/ sylvanians etc.

There's probably more...

I have a much younger sister, diagnosed as an adult. When I think back to her at 6/7/8 she was very eager to please, compliant, seemed to go along with whatever other people wanted. Perfectionist with her work. Looking back she says she knew she was odd or different in some way but wanted to fit in so pretended/just tried to make other people happy.