Girls-signs of autism?

[Hitthedrummergetwicked]

What age did you notice any signs and what were they?

My experience based on many years working with teenagers is at a lot of girls with Autism cope pretty well in primary school but things become more challenging when they get to secondary. Year 8/9 seems to be peak time for girls we've not been concerned about before starting to struggle hugely with friendships and regulating their emotions, then on exploration it turns out there have been issues for a long time but they've been good at masking socially.

Flitting from one friendship group to the next, forming very intense friendships but then not being able to maintain them for long is common IME. As is being highly suggestible and easily influenced by peers, which can be really detrimental to them. We see lots of girls with Autism struggle to cope with social media, knowing what is and isn't ok to share and having trouble distinguishing what they see online from the reality of people's lives. They may get in trouble for truancy or punctuality because they're trying to avoid lessons that are particularly noisy or avoid the crowds at changeover time. If this isn't picked up and tackled early enough it can often result in a child avoiding school altogether. Issues with food are very common, a lot of teenage girls who are referred to CAMHS with suspected Anorexia turn out to have issues around atypical eating associated with Autism.

What continually saddens and frustrates me is that so many of the issues above could be avoided or certainly the damage limited if Autism was picked up and support offered earlier.

My eldest, I always suspected something but didnt know what but nursery and school initially said oh no she's fine. Then when things fell apart in Y9/10 and she started to display outside of home, they put it down to my parenting. Eventually she was diagnosed at 17 after being managed out of her mainstream school at 15.

With that in mind I was always on the look out with my younger children. Desperate to get early intervention if needed to avoid the same issues that late diagnosis brings.
DD2 always showed signs of ADHD from babyhood, but primary school couldn't see evidence so our request for assessment was rejected even though she scored highly at home.

She is now in Y7, really struggling socially and emotionally, secondary have said they can see traits of autism in her, which made sense as soon as they did but I hadn't considered as she doesn't have meltdowns, compared to her explosive older sister. Anyway, back in the queue for CAMHs with a 3.5yr waiting list. I'm debating going privately to be honest.

Its so frustrating. Perhaps if I had been listened to last time we could have got a diagnosis and support by now.

At 2 years her sensory problems were very much evident.
At 4 in reception she'd refuse to move all day from under a table and I was advised to delay school for a year.

At home she was a happy cheeky fun loving little girl. She played very well on her own in a world of imaginative creatures. Special interests/ hyper focus very evident.

At school from reception to year 7 she struggled with relationships so badly. She tried to understand but just couldn't. She'd get so cross when others refused to 'be told how to play'!

At year 8 she left school permanently, her autism had triggered a breakdown and it was this that got professional involvement and a diagnosis. She was about 14 when we got a diagnosis.

I'd say our main indicators looking back were significant sensory issues. If you can get a decent private paediatric OT to assess it's worth it's weight in gold.
Other indicators were extreme anxiety, fear of things outside the home and not understanding how to play with others at all.

Our home is an autistic home and it shielded her so lots of things that may have been issues in other households were assimilated in ours. It was more when she had to go off without me she didn't cope.

She's an adult now and we are still working on catching up.

@JomonotFomo we went private there were a couple of options around £1500-2k mark still had to wait 6mths to be seen but better than 2-3yrs wait list NHS in SW. But it literally just gives you a piece of paper I felt confirming everything we’d already told the school! You still need to join the queue to get EHCP assessment but at least you can push harder with a confirmed diagnosis and focus on what reasonable adjustments are needed.

My girl was spotted at 18m. Initial assessment at 3 where they wanted an 18 month wait before confirmed, diagnosed at 5. Then diagnosed ADHD at just turned 6.

She won't make eye contact. Wouldn't respond to her name. Was in her own world. No joint attention. No pointing/clapping etc. No speech. Limited communication

Shes 7yr9m now.

Talks a lot but actual communication is difficult. Lots of echolia. Lots of set phrases that you only notice when they don't quite fit.

Very sensory.

Has zero social awareness. Zero awareness of appropriate behaviour. Zero understanding of suffering situations = different behaviours.

No eye contact.

Has no friends and no interest in peers, she isn't interested.

Limited sense of danger.

She needs specialist school but is in mainstream with a full time 1-1 of about 45 hours per week.

Oh and for years she made this horrendous clicking/growling noise as a stim constantly.

In hind sight she always showed signs, even as a baby.
I felt autism was likely at 6.
Someone experienced picked it up at 7
She was diagnosed at 9.

@MermaidSwimmer oh absolutely. When dd1 was finally diagnosed they gave me a sheet of A4 with some links to parent groups and websites. Nothing else. But the diagnosis has protected her in the workplace as the anxiety and depression alongside affect her attendance.

I just wanted an earlier diagnosis for DD2 so that she had more protection from secondary school managing her out and also for an easier experience for her.

Many of these describe my child.

Wondered how many others also have joint issues, hyper mobility thing? Which I believe may be related

I knew my daughter was ND early on but couldn't place my finger on it. She was not a happy baby, undiagnosed milk allergy contributed but I realise now that there was a certain amount of overwhelm too. She had a special interest/obsession that started at 8 months old and went until she was 2 or so, which in hindsight I see it for what it really was now! I was a nanny for autistic children before having her and it didn't really click though their needs were more of the classical idea of 'low functioning' ASD, though I'd argue that label.

Colleagues suggested looking into ADHD which seemed to fit, she was 3/4yo at that point and main indicators were social development and special interests really, though there were other little things. Paediatrician suggested ASD assessment as well last year when she was just 5. Now she's 5.5yo and the emotional side of how ASD affects her is really starting to become obvious. She's home educated and I expect that had she been in school it would have become clear very quickly there as the social burnout/masking is a real struggle for her. Usually 3hrs out and about/with other children is her limit before she starts struggling. She manages a whole day as an occasional thing but needs a day or more 'off' afterwards or her behaviour becomes increasingly difficult to manage and she finds it harder to self regulate. Not officially diagnosed yet but waiting for her assessments, both of which should happen around the time she's six unless there are delays.

Dd was 2 non verbal, behind on other markers too refusing anything but milk and fries. She learned to talk at 4, is extremely clever but different, she's an adult at university now

By the way the signs were there from birth, I just didn't see them. Her sister was so different

Always knew there was something different put it down to her just being quirky. She had amazing fine motor skills very early on, Walked early, talked early, taught herself to read. Couldn’t be bothered with learning phonics. Very gifted at drawing. Hyperfixations, was never a typical girl, had one friend who is still her best friend.

By secondary school she couldn’t keep up with the masking, around covid she was badly bullied and then it became apparent she had autism. To her I think it was a breathe of fresh air, in her own words she didn’t feels like a weirdo anymore. She’s totally embraced her ASD now, she’s wonderfully bonkers still has hyperfixations, going to college to study animation. She dresses how she wants and has given up trying to fit in.

Interestingly, I am a SEN teacher and I would say we have 8 boys to 1 girl in our school. It’s primary and severe and complex needs so I think at that age boys are just getting diagnosed quicker and girls shunted into mainstream as they seem to cope (mask) better.

I was 3, diagnosed with low functioning and got told I would never talk or lead a normal life. Signs were being overly sensitive to noise, couldn't do crowds, couldn't sleep alone, refused to go to school etc. Now as an adult I find I no longer have any of the struggles I had as a kid, noise and crowds don't bother me at all. But I do struggle with maths, always have done and it meant I never managed to complete any gcses.

I had suspicians early on due to poor sleeping and extreme reactions to noise. As a toddler no fear and running away, generally wired behaviour. Very sweet and funny but extremely wilful and unresponsive to discipline. Real problems started at school with explosive behaviour. No tolerance for things not going her way. Relatively calm at home. I was convinced it was ADHD as she was very bouncy and didn't sleep much. Language skills always good and able make friends and play imaginatively. Diagnosed with ASD with sensory processing disorder at age of 8. We think she has PDA but not able to get a diagnosis.

Very needy from birth til about 6 months old, I couldn't put her down at all in her early months or she just screamed blue murder. It was so bad I couldn't go to the loo & even accepted her from our Maine Coon cat, who I realised would lie alongside her & purr & it was the only other time DD would settle. This became my toilet routine, looking at baby & cat whilst I sat in the loo or got washed.

Sensitive to food chemicals from birth & passed through breast milk. Affected behaviour, skin & bowels. Sensory processing disorder & IBS diagnosed by 3 years

VERY early on all of her milestones. First word at 5 months, speaking in full sentences before 1yo, up & running around by 9 months. Taught herself to read by memorising whole words by 2,1/2... (this needed some unpicking by the time she was learning in school as she struggled at first with phonics.) Taught herself to count by 16 months, became obsessed with maths & was doing complicated sums before she ever started school. We used little sums to keep her occupied when out shopping & soon realised we couldn't keep up with her & dug out a calculator 🥴😂

She was ahead in all lessons once she started school, was frequently praised for her kind, caring thoughtful nature & how she'd teach herself a bit of a new language ahead of mentoring a new non English speaking kid joining her school. She had & still has an enormous sense of justice, fairness & a mile wide perfectionist streak. Anxiety became apparent as time went on & her sense of fairness & justice had her speaking up against "naughty" behaviour in her friends & classmates lead to her being bullied.

She did exceptionally well in school, was picked up as gifted & was by now also diagnosed with Ehlers Danlos (linked to ASD) her quirks & anxiety were kind of covered by this & school put her eccentricities, perfectionist streak etc down to her being gifted & other health issues covered poor balance etc.

By high school her health nose dived until she was also diagnosed & treat for pernicious anaemia. That was a tough few years with her mostly bed bound, unable to walk, in constant pain, anxiety & sensory issues through the roof. Her b12 injections thankfully turned most of it around & she made it back to school & finished school & 6th form with amazing results, especially considering what she'd missed & still dealt with.

There were many times that us & other friends & family questioned if she was ND, but there was always another answer for her issues & she was just so incredibly bright & mature for her age & friends boys with ASD had struggled in school, so we kept putting it away in our minds.

At 14 DD came to us having watched ASD in HFA girls videos & recognising herself & asking for diagnosis. Despite our GP, who has known DD since birth agreeing that she too could see ASD in DD, CAHMs rejected her referral twice. We were finally starting to get through the system a third time, when DD pulled the plug & decided she doesn't want a diagnosis. She was 17 by then, so her call. But we had got as far as her scoring much higher on the AQ10 test than any of us expected & a psychologist agreed ASD looked very likely after meeting her.

Now we know more about ASD in HFA girls & that it isn't just developmental delays that can indicate ND, but abnormal development too, we can absolutely see she has autism too & we've had counselling ourselves to help us better communicate with her, as things got really bad for a few years. Our psychotherapists DD has ASD too & there are so many parallels to our DD. This has been really helpful to us & things are getting better with DD

Because she had

Wondered how many others also have joint issues, hyper mobility thing? Which I believe may be related

@FirstAidKitNowPlease

It's definitely connected. Our GP used DDs Hypermobile EDS diagnosis as part of her referral information & both GP & other doctors have told us there's a 7x higher chance of ASD with EDS/Hypermobility

Honestly- from being days old my daughter was different to my other children. She wound scream uncontrollably and would actually cry to be put down rather than held.

Around the age of 3 I just knew. She was really highly strung, everything had to be planned meticulously. She had really rigid routines and imposed rules on everything. She really struggled with sensory overload. At 5 she was still wearing nappies.

Finally diagnosed age 6.

I noticed traits at 11 months but looking back now I can see it from as young as 4 months. Dd didn’t babble, didn’t smile, didn’t make any noises at all.
She didn’t look at anyone, didn’t respond to songs or games. As she approached 1 and beyond she never responded to her name or any noises (so if I clapped at one side of her, she wouldn’t turn to see what the noise was) she was completely unaware of others around her especially children, she had literally no idea her big brother existed, would just walk straight past him.

It was only my mum and childminder who shared my concerns. With everyone else it was ‘oh they’re all different, she’ll catch up’.
When dd had her 12 month review (happened at about 14 months) she passed all her physical milestones except being able to jump and failed every single speech, language and communication milestones. She was referred to ENT and we then began our journey to assuming dd would be diagnosed as deaf. The test was very hard to complete and we had to return many times as she just wouldn’t tolerate it. Results eventually revealed she wasn’t deaf so we then moved onto speech therapy. Dd still didn’t respond to her name, she said ‘nose’ once and that was it, never said a word again until she was 4. She would take our hands and lead us to what she wanted.

Speech therapy did nothing, she spent the majority of the time screaming in a corner, covering her ears (what I now know were meltdowns) or climbing everything in sight or trying to climb out of the windows there.
She hit us, bit us, punched us, scratched us. She had no sense of danger awareness, ran into the road, she would bolt without warning, jump from the top step, climb as high as she could and just jump, extremely sensitive to noise, very sensory (only wear certain clothes), extreme dietary requirements (safe foods and textures etc) TERRIBLE sleep, would strip off naked in public, wasn’t toilet trained until almost 6, still in nappies at night now at almost 9, just pull pants down and toilet wherever we were.

After speech therapy showed no improvements, she was placed on the autism pathway. We saw lots of paediatricians and educational psychologists, it was a hell of a journey. She eventually began to use some words at 4, recommended apps and YouTube kids did wonders for helping her talk, and she can now speak - in a fantastic American accent, we’re from Yorkshire 😂people actually ask us where we’re visiting from!

It hasn’t got easier as she’s got older, we just recognise triggers and what to do and can mostly manage things but it is difficult and draining. Through the years we have had genetic testing done which has revealed she also has learning disabilities and muscular dystrophy so she also uses a wheelchair now.

Dd received her diagnosis at 4.5 yrs, she will be 9 soon. We have no idea how she will develop but she is still making progress everyday. If you met her, you would probably think you were chatting to a 4/5 year old, she is very delayed. Her understanding is still not great, has no concept of time whatsoever (when she says yesterday, it can mean yesterday or 2 years ago) but we have some cracking conversations. She is so so funny, has absolutely no filter and although she hates noise she is the loudest in the room.

Gosh sorry that was long!

What do you mean by a strange noise?

It was a noise I'd never heard before or since but it was like a constant whine through gritted teeth which is why the GP suggested she might be cutting teeth I suppose. Speaking to the paediatrician later he suggested it might have been cerebral irritation but I don't know what it was only that dd was changed from then but she was autistic before then it wasn't the cause of the autism.

Age 11 months her first words were where? (because I was trying to encourage her to point) hair (only the specific hair on a specific fimble toy) and square (you could show her all sorts of shapes but she would only say square when it was a square so could obviously identify a square

What...? You think your daughter could ask where in context, and identify hair on a toy and a square at 11 months? Don't you think it could just have been a particular noise she made since they all sound similar?

Diagnosed at 13.
Took her to the GP as she had really low moods and no enthusiasm to do anything. The GP called it as ASD then, said she'd be surprised if it wasn't. Up until that point, it hadn't been on our radar, we just had her down as quirky and very smart.
In hindsight, there were signs when she was a toddler. She always struggle socially.

@ObviouslyNotAFan No the three words were crystal clear. I had early talkers, really early talkers (A GP saw my son at 15 months and said he had never heard vocabulary and comprehension like it and called in the other GP to listen to him hold a conversation) so it wasn't unusual for my children that they could speak but the first three words she spoke were not typical words