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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

What was signs of asd in older girls?

113 replies

schoolissues1234 · 22/10/2022 20:31

My daughter is 9 and I’m questioning whether I should be looking at getting her assessed for asd.

She is a lovely girl but there are a few quirks that are starting to feel a little age inappropriate.

she is extremely fussy with food and struggles to try new things.

she struggles in some situations (for eg a transport museum this weekend) where she starts crying and saying she wants to leave.

she spins a lot. She also sings all the time or dances about. She was a mad climber when she was younger and was always on her head doing headstands etc.

she doesn’t cope well when plans change. For eg if I say I’m bringing our car to school and it’s a nice day so I decide to pick her up on foot she will break down and cry in front of her friends with no embarrassment.

she has nice friendships though and she does do a lot of imaginative play on the other side of things.

she is very shy around new people but very happy and comfortable with people she knows well and family.

she doesn’t always answer to her name and seems to ignore requests (time to get out the bath etc).

she reads all the time, total book bug and can play with her toys by herself
for long periods of time.

she has weird sensory things. Like wanting to put her hand in our mouths when she’s falling asleep (we don’t allow this any more!)

she does well in school, although she is dyslexic so struggles with spelling.

OP posts:
buttons123456 · 23/10/2022 07:18

We had dd assessed when she was 17 . Not one person flagged asd up when she was young ..
In puberty she got depression and anorexia after struggling with anxiety for a good while ( Covid didn't help) ..

Asd in girls is often hard to spot and both the psychologist and psychiatrist said it should literally have a different name as it often has no similarities to classic autism in boys ..

Get on the list now as it will take years ( we went private as she was nearly an adult and I didn't want her to go to uni not understanding herself properly .

georgarina · 23/10/2022 07:25

With my sister, it was stimming (flapping hands), speaking in a very fast monotone voice, specific intense interests, and difficulty making friends

TheHouseonHauntedHill · 23/10/2022 07:38

My dd sounds similar but no stymimmg etc.

She does chew a bit, incredibly stubborn, we can't say... get dressed we are going out.
She told me she's shy not like the other girls at school?
She has good friends and I saw her play with a wonderful pal who lived next door they seemed so balanced and rational but she has issue with other girls at school.
Very late to reading but it's mostly the lack of smoothness she won't do as asked it's always a struggle.

I wonder if I should get her looked at?
Unfortunately the school is beyond useless, beyond. Senco is beyond unhelpful and we had a massive struggle to help for her not reading. (Did it myself in the end)

Would I go to gp?

I'm very worried about school secondary.

Fink · 23/10/2022 07:43

schoolissues1234 · 22/10/2022 22:56

@Fink how does your daughter present if you don't mind me asking? Just looking for more clues myself thanks.

I don't have time to write a full list now, I have to get ready for work. But, off the top of my head, things like a lack of empathy, inability to keep friends (can make friends, but they get fed up with her quickly), overly-literal interpretation of figures of speech, gets burn out from things like WhatsApp after a day at school and can't keep up with expectations to keep in touch with friends, fidgeting, sensory issues with food, lack of eye contact ... there are loads more, but I have to run.

Winter789Mermaid · 23/10/2022 07:56

Follow your instinct do your research and support / parent as if she is at home.I told school when my daughter was age6 I thought she was autistic but was ignored until school refusing with huge anxiety started to kick in age 9-10. We got a private diagnosis age 10 as wanted to get more support at secondary school asap or risk her dropping out. Shes academically very able which has been an issue because primary school just couldn’t ‘see it’, they just saw a quiet anxious child but the gap in emotional regulation & social skills between her & her peers grew a lot age 10-11. She’s now 11 in year7 at school they have been great with structured sensory breaks, can leave class when overwhelmed, leaves school 5mins early to avoid bell.

have a look at the referral process for a child in your local authority area, just filling in the forms is eye opening & emotionally upsetting as a parent when you start to really articulate the differences between age appropriate behaviour and your own child. But you need to in order to secure any kind of support at school. Good luck.

Winter789Mermaid · 23/10/2022 08:01

@TheHouseonHauntedHill have a read of the PDAsociety co uk website parenting guide is helpful if you have a child who doesn’t respond how you think they should it’s challenging but does help with rephrasing things.

TheHouseonHauntedHill · 23/10/2022 08:05

@Winter789Mermaid

Thanks, can I ask what forms? Going to a council reception where do you ask to go.

Isthisexpected · 23/10/2022 08:18

Some examples from an 13 year old:

  • incredibly blunt and no desire to learn social etiquette eg "do you want to come to my party?" "No it sounds boring."
  • very literal and will only do exactly what was instructed eg please get some cutlery - will only get her own.
  • loads of the same with PP such as food issues, struggling with the unplanned/unexpected/ changes.
  • blank expression when others are talking and no attempt to hide boredom

Much of it didn't really become apparent until about 9 when her friendship group changed from nursery and it was clear she hadn't any desire to mask (or knowledge that's what she could do). Has really struggled since. Will make a friend by intensely bonding over a shared interest outside or inside school then when she's had enough of it and wants a new focus she drops friend completely or if friend suggests broadening their interests she ditches friend.

ByTheGrace · 23/10/2022 08:33

Worries disproportionately about breaking rules

This, massively so. It doesn't help that her school have a ridiculous behaviour policy, which punishes behaviour attributable to ND traits, (fidgeting, doodling, calling out etc).
School is 99% of the problem in DD's case. Awful, awful amount of bitchiness from her peers, part of the reason why she doesn't want an autism diagnosis, as she said it will make her a social pariah. She's already known as hyper and that would be less of an issue.

For the pp feeling guilty about not starting the process sooner, don't. There's no guarantee you'd have had any help. DD has been in the system since she was 5, lots of muttering about related diagnoses, although it wasn't helped by lots of relocations when she was younger. We've been told she will probably age out of CAMHS before she gets to the top of the assessment waiting list.

Namechanger965 · 23/10/2022 08:40

My DDs 5 but reading the OP was like reading a description of her. DD is under assessment for ASD, paediatrician we saw for her midway assessment seemed to think it was likely she would be diagnosed. The dancing and singing drives me barmy as she like to have the song playing at the same time and if she messes up a line or misses it she has to restart the whole thing and redo it. She has to do them exactly a certain way. We also had meltdowns at school about attending and anxiety leaving me.

I would start the process for assessment now. DD was referred about 18 months ago and the list is years long.

PaulaTrilloe · 23/10/2022 09:01

OP check out Caldwell Children diagnosis support charity

PaulaTrilloe · 23/10/2022 09:05

Sorry CAUDWELL children autocorrect!

miffmufferedmoof · 23/10/2022 09:09

My DD(9), recently diagnosed, is extremely sensitive, both emotionally and sensory wise. Any tiny thing going wrong can set off tears or screaming. Fussy eater and struggles a lot with the feel of clothes.
has recently started to struggle a lot with things happening not as expected. She paces round in circles a lot. A perfectionist. Sometimes interrupts or monologues, showing she doesn’t quite understand the rules of conversation, although this is fairly subtle.

She’s beautifully behaved at school, has friends, engages in imaginative play, is empathetic and verbally very articulate.

Paddingtonthebear · 23/10/2022 09:17

This is really interesting. I have a 10yr old DD with a few strange quirks and I’m not sure whether there’s something “there” or not.

Thehonestbadger · 23/10/2022 09:20

I’ve done endless reading on the differences between boy ASD presentation and girls.
My eldest (DS) is ASD and my youngest (DD) isn’t as far as we can tell but she’s only small still (16m) so I’m really alert to it presenting.

with my DS it is very obvious. He’s non verbal, somewhat low functioning and has a lot of the very clear signs.

Girls often don’t. Girls are much more likely to pass as ‘normal’ till later in life. They are more likely to hit milestones like talking, imaginative play and socialisation but just seem a bit ‘off’. Maybe struggle emotionally or sensory and fixate on certain things.
With what you’re describing id push getting her screened you have nothing to lose whilst she has everything to gain x

Paddingtonthebear · 23/10/2022 09:27

How do you go about getting a screening?

ScottishInSwitzerland · 23/10/2022 09:34

I would agree with others to kick off the diagnosis process if possible. Our experience was that ASD became more obvious as our daughter got older.

ASD definitely can present very differently in girls. For example my daughter is exceptionally passive at school and for a long time they thought of her as a ‘nice, sweet, quiet girl’ (of course she is lovely and sweet but she wasn’t being passive because of that but rather because she was overwhelmed and retreating into herself).

CoolBeanie · 23/10/2022 09:42

One I’ve thought of, which can make it harder for school to understand and pick up when it presents this way… is my DD can be “overly expressive” and sometimes have slightly exaggerated social responses. Her voice isn’t monotone and she is very enthusiastic and animated when talking.

She smiles a LOT, and seems happy even when she isn’t. In fact, there can be a correlation between how “okay” she seems after something upsetting happens and how upset she really is. There is a certain type of smile that I describe as “a stage school smile”
and it’s a cover up one that I have come to recognise, but it certainly isn’t something that people who don’t know her would see, and it contributed to school thinking she was “fine” when she really really wasn’t.

The bigger the smile and the more emphatic “I’m FINE, I understand” (about something like not being invited to a party sleepover) the more concerned I am, and it usually comes out later in a meltdown. I don’t think she is deliberately lying about her feelings other, but it takes her a while to feel or to even recognise her emotions, as well as partly wanting to cover up socially.

Re: the not being able to feel feelings -for example on a Sunday evening before school she would often be awake really late with a headache and nausea. She would say it had nothing to do with school (and I think she really believed this) but that she was ill. Soon as we took her out of school this stopped.

Back to the masking and social skills - my DD doesn’t come across as shy, and she will talk to anyone. Seems really confident. But actually, that is a little bit unusual in itself, and as she has become older (she is 9) I notice it more, as older DC don’t usually start conversations with shop assistants and strangers, so it stands out more than it did when she was a younger child. She also keeps talking even if the person isn’t being especially responsive.

She also uses stock phrases “So, how was your day today?”/“Any plans for the weekend?”.

Recently I could hear her chattering away to the receptionist, when I had a quick hair appointment, and DD asked her “So, are you doing anything after work tonight?” and it made me smile. It’s hard to explain but if you listen carefully it’s possible to pick up the social phrases she has stored, that sound a little bit adult.

This was picked up in during the ASD assessment. Also, there are a few parts for it when the clinician makes small talk and talks about plans they have. I heard my DD exclaim “That’s amazing!!” when the clinician talked about her plans for the weekend. But later on DD responses again with “That’s amazing!” or “How amazing!” , “Amazing!” in the same tone of voice in response to the clinician sharing information about herself

it was exactly the same each time.

This was picked up on. They also noticed that when my DD exclaimed “I’m so excited!” a couple of times, her facial expression didn’t
change or show excitement to match what she was seeing.

So, the masking side of things is really subtle and took experienced clinicians - who know a lot about masking and autism in girls - to recognise. Some traits of DDs are stereotypically autistic, but the social communication side was harder to see.

School insisted “She has loads of friends” but this wasn’t as true as it seems. She has acquaintances but can’t seem to form many close friendships, or she forms them and then loses them, and is desperate for a “best friend”. School weren’t seeing that though, they saw her with other children in the playground and took that and face value. She is actually also more comfortable and confident with adults than with her peers.

We saw the extreme meltdowns and the loneliness and fear and anxiety at home but she usually holds it together in public. So girls can be harder to recognise.

schoolissues1234 · 23/10/2022 09:55

Thank you all.

OP posts:
buttons123456 · 23/10/2022 14:02

@Paddingtonthebear it's incredibly difficult but you ask for a referral via your gp . I skipped all that and paid for one for dd ( around £3k) because camhs are useless unless you are the child of a druggie or alcoholic family and at risk ( yes they admitted that to me ) ..

Dd wasn't but needed help so I paid for it 🙄🤷‍♀️

Winter789Mermaid · 23/10/2022 15:51

Someone asked up thread about referral forms you look on your LA website for child services and a referral it’s all online in my local education authority.
www.ipsea.org.uk has good information

Cats1234567 · 23/10/2022 16:07

Your daughter sounds very similar to mine, yes definitely get her assessed.

my daughter is diagnosed with high functioning Autism and ADHD.

Cats1234567 · 23/10/2022 16:19

Forgot to add, my daughter gets also obsessed with things, is very literal, has difficulty understanding emotions, and finds it difficult expressing her needs to others, she acts very young for her age and is easily swayed by others. She sings and talks constant throughout the day, spins, paces, and sometimes rocks back and forth when sitting down. I have also had people not believing me that she is autistic as she gives eye contact and can be sociable (although that’s on her own terms) but she is a masker, so sometimes in girls it’s not always obvious…

miffmufferedmoof · 24/10/2022 07:55

@Paddingtonthebear it varies by area, but where I am you can ask either your school or your GP to refer

Toomanysquishmallows · 24/10/2022 08:30

I don’t want to derail , but I have a 13 year old daughter who was diagnosed at two , although a lot of what is mentioned here is familiar regarding terrible sleep and anxiety.The I question is , if autism in girls become seen as a separate condition to autism in boys , what happens to girls like mine , who got an early diagnosis because of obvious traits ? Would she get diagnosed with “ boys autism “?