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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To wonder just how well girls with ASD can mask?

77 replies

Tiredmum1511 · 13/12/2019 18:16

I'm struggling to get my head around likely ASD 5 year old DD being so one way with us and so different at school.

Can reception aged children really mask this well? Apparently she's completely normal at school

OP posts:
LastMichaelmas · 13/12/2019 19:19

I'm gonna give you an invisible 10kg sack of potatoes and I'm going to need you to carry it around with you. But nobody can know you're carrying it, cause nobody else has a sack of potatoes and they don't want to be aware of yours. That means you can't use a rucksack, a trolley, or anything like that.

Hiding the fact you're carrying makes it way harder, but you have to. How long do you reckon you could keep it up? The longer it goes on, the heavier it feels, the more pain you feel, and the harder it is not to grimace or grunt or give up.

So when you get back home, where you don't need to hide the potatoes, are you going to keep carrying the sack while pretending it's not there? Or are you going to grab a rucksack or a trolley to carry them with, or maybe even throw the fucking potatoes on the floor and collapse on the sofa knowing you have to do it all again tomorrow?

NewNameForMeNewNameForMe · 13/12/2019 19:24

Look up the coke bottle effect. That explains what you are seeing. The ASD or anxious child holds it in all day & is under so much stress to conform that as soon as they get home they literally explode as if someone shook a coke bottle & then opened it. This is particularly common in girls with ASD.

I have 2 DD with ASD. One presents in the way you describe & the other doesn't discriminate. It is very hard getting girls dx. My youngest was dx at 12 but the eldest (who presents like your DD) was 18. I am now 46 & also presented as you describe. Hoping to get my own assessment soon. I'd say set the ball rolling for assessment ASAP.

LastMichaelmas · 13/12/2019 19:25

In other words, some of us? Really really well. Up to a point.

yellowellies · 13/12/2019 19:27

Like the sack of potatoes analogy, when DS 1 was first diagnosed the example given was a bottle of coke. Each little thing through the day was shaking the bottle up- transitions, plasters, whatever, but she still has the lid on the bottle, so no one can see how shaken up it is. Gets home and unscrews the lid, coke every where!

pontiouspilates · 13/12/2019 19:34

Yes, girls with ASD can present very differently to boys because of the masking and this often results in delayed diagnosis.

LastMichaelmas · 13/12/2019 19:35

Schools need to change. It needs to be okay if people can see you're carrying a sack of potatoes. You shouldn't have to pretend; it just makes it all ten times harder. And they need to stop gratuitously shaking the Coke bottle too. I see those two analogies as each being better at hinting at slightly different aspects of the same problem — the Coke bottle part, having to force yourself to pretend things aren't bothering you, and the potatoes, the burden of constantly interpreting others and creating the correct impression.

beautifulxdisasters · 13/12/2019 21:24

I did.

I often wonder why the hell my parents didn't pursue a diagnosis, as I don't think I masked very well at home.

If you think it's a possibility, getting her diagnosed will be a positive thing for her development. I wish I'd been diagnosed earlier.

TheSpatchcock · 13/12/2019 21:42

@bitheby

It's really common, especially in girls, to behave really well at school and then meltdown at home.

My niece does the exact opposite. School have referred her but shes absolutely fine anywhere else. She hasn't been diagnosed yet and from what I've read she won't be for a while. Is it usual to ok at home and meltdowns and violence at school? Flowers

breastfeeding · 13/12/2019 21:45

My dd masked so well I was accused of having munchausens and ‘diagnosis chasing’ for financial gain as she was apparently’fine at school’ she wasn’t at all they just didn’t want to fork out for support so minimised

WeirdPookah · 13/12/2019 21:48

Well I am undergoing the process of diagnoses... I just turned 40.

Girls are amazing! Which is why it was so long just ascribed to boys, why check lists and tests are based on boys.

bitheby · 13/12/2019 22:00

@cock

@TheSpatchcock

It depends what's going on. With girls, it can be usual to hold everything at bay at school because there are rules around behaviour and they're trying to fit in but they can't hold it all in for 24 hours a day so they meltdown in situations where they feel safe to be themselves - at home.

But for all of us on the spectrum, if we're overwhelmed then we'll meltdown. So if school is causing so much stress - emotional, sensory etc that she can't cope, then she'll meltdown at school. Conversely if home doesn't have the same stressors then she might not get so easily overwhelmed at home.

Hope that makes a bit of sense.

bitheby · 13/12/2019 22:00

Extraneous cock there....

typing on my phone.

BercowsFestiveFlamingo · 13/12/2019 22:03

Great thread, so many of us out there who have been dismissed.

I have 2dds that I'm sure are on the spectrum. CAMHS gatekeeper said no way is Dd1 autistic because she's got friends Hmm not got ADD as can recite numbers back. She has superficial friendships and is chaotic at home. Dd2 is an angel at school and prone to meltdowns and angry tears over very little at home. Dd1 has sensory issues around noise, dd2 around textures. I'm the same (with severe misophonia) but my GP told me it's not worth getting myself diagnosed as I've coped ok in life and now I'm in my 40s there's no point. Reading about ASD and ADD when I wanted to help Dd1 was a eureka moment for me that explained my whole life. I just accept now that our brains are wired differently and it's just the way we are. I do need to read up on strategies to help with organisation and meltdowns though.

I hope you get the help your dd needs OP. Schools are shit in my experience when it comes to girls with ASD/ADD unless they follow the "typical" and more well known stereotypical pattern of behaviours Thanks

PlasticPatty · 13/12/2019 22:04

Autistic, 62, here. No-one knew girls had autism, when I was in reception.

She'll be terrified, all day, and trying to do what they say, even if it hurts, even if it is totally incomprehensible to her. They expect compliance, she complies, they think she's ok.

She's probably not. She comes home where she knows people love her and it all comes pouring out.

PlasticPatty · 13/12/2019 22:05

I have flashbacks to my school days, especially to the first year, even now. PTSD!

ShouldI101 · 13/12/2019 22:05

Sorry I got yabu by mistake. But yanbu. Even 5 yr olds can mask, and mask really well.

TooManyPaws · 13/12/2019 22:25

I'm 58 and only just in the middle of all this diagnosis stuff. Of course girls mask. Autism was thought to be extreme male behaviour and female autism doesn't fit the accepted pattern unless it is as obvious as fuck.

Original poster
Tiredmum1511 · 13/12/2019 23:16

Thank you this has been really eye opening. I literally can't comprehend how a 5 year old can cope so well within school yet absolutely every other setting her difficulties are so obvious.

We are in the process of diagnosis but very concerned that school not seeing it will mean we get nowhere

OP posts:
Lougle · 13/12/2019 23:28

DD2 was 'fine' in year R. I noticed things which seemed out of place, but they thought she was fine.

Very much not fine in year 1, but 'fine' at school itself. I was accused of Fabricated/Induced illness because she dropped attendance due to physical symptoms of her stress.

Not fine at all in year 2 (by now in school 2) and I eventually removed her from school.

Year 3, 2nd new school, did well. HT recognised her traits, though. Year 4, wobbled. Year 5, fell apart (class transition). Referred to CAMHS.

Year 7, diagnosed with ASD, did ok at school but very anxious at home, shut down once home.

Year 8, struggling.

PlasticPatty · 13/12/2019 23:31

I literally can't comprehend how a 5 year old can cope so well within school
She isn't coping, she's covering up.

Ormally · 13/12/2019 23:40

Oh yes.
Nowhere to hide or decompress at school, usually.

Lougle · 13/12/2019 23:41

DD2's year R teacher said 'She's so easy to assess. I show the class something and then 10 minutes later she brings me exactly the same thing!'

Well, yes, because she didn't have the imagination to vary or adapt what she'd seen. She just copied it. She seemed really clever, but she was just copying.

Bogiesaremyonlyfriend · 13/12/2019 23:43

Yes definately better than you'd think. Dd is fine all day st school, even described as resilient by her teacher this year. She will literally see me at the school gates and start to cry. She has had days when something has gone wrong at school and cried from the moment I've picked her up well in to the early hours. The slightest thing can set her off at home but at school she manages to keep it all in. I do worry for her mental health as she gets older.

Ormally · 13/12/2019 23:43

And, yes to PlasticPatty. If they expect compliance at school and they get it, it becomes an ever-narrowing tunnel but it is exhausting to comply. Discipline is nothing but a battery: it runs down, alright.

IHaveBrilloHair · 13/12/2019 23:47

Dd is 18, she can still present as totally "normal".
Her ASD/PDA is so bad that she was in care for a 14 months.
Don't under estimate how much it affects her.

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