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AIBU?

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

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Tamalpais · 14/12/2019 20:46

Part of me thinks if she can cope with these things at school then I need to become more forceful in making her cope with them at home too (which seems to be the school's stance).

Please don't. That way lies mental health issues.

She's doing her best to comply at school. To fit in and not stand out (thereby avoiding unwanted attention). If she has to do that at home, it'll remove the place she feels safe and able to be herself.

When I was younger they didn't diagnose girls, so I've always flown under the radar. I'm even in the closet, so to speak, with non-family, because I can pretend to be neurotypical most of the time. But I nearly died in my teens because I was masking so much and neither my parents nor school were supportive.

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NettleTea · 14/12/2019 20:26

I made it to age 53 relatively under the radar (well, I thought I did, but many others suspected)
Partner made it to 52 before diagnosed
DD made it to 12
DS made it to about 8

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NewNameForMeNewNameForMe · 14/12/2019 20:24

If I could do anything differently now it would be to get my kids privately dx. Waiting for CAMHS to fob you off takes far too long. I'm not saying to bin them off completely, because sometimes an NHS dx is necessary, but a private dx should make getting the NHS dx easier & if appropriate an EHCP to enable extra help in school or a special school even.

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skybluee · 14/12/2019 20:22

It just is really, really misunderstood, especially in girls.

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reluctantbrit · 14/12/2019 20:18

DD is 12 and we now start ASD assessment. She can mask it extremely well but since she is in secondary problems become more noticeable.

Saying that, I already suspected something in Y5 but with borderline ADHD dignosis already, issues were explained by this.

She is very different between school and home. She absolutely loves routines so school is easy, we have the issues at home. Luckily the Senco is aware that this is very common, especially with girls (she is at an all girls school) and supports us.

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Ormally · 14/12/2019 20:12

Regarding masking during the assessment: possibly, but it is likely to be quite full-on and varied which may make it pretty difficult to keep up the masking as well as do what is required and follow instructions. There may well be some things that depend on the memory as well (i.e. to recall something from earlier or identify something that was not referenced, but with other tasks done over the top of it in the meantime).

I also thought that something you might think about watching out for is whether there's more of an inclination to 'show, not tell' - in her playing, creative activities, observation skills, or even in her moods.

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Xmasbaby11 · 14/12/2019 10:35

My dd has never been able to mask. She's got fairly mild ASD but behaves the same at home, school, childcare, anywhere. Which is a shame because one of her big problems is following verbal instructions, and she struggles with it in every situation.

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PlasticPatty · 14/12/2019 10:11

Part of me thinks if she can cope with these things at school then I need to become more forceful in making her cope with them at home too (which seems to be the school's stance).

Speak firmly to that part of you, and advise her not to be cruel to her own child, vulnerable due to her age and to her all-encompassing disability/different way of functioning that will be with her all her life. Treat your child with compassion.

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AdalindMeisner · 14/12/2019 10:04

My youngest masked so well she was 12 before it was suggested (she developed severe anxiety and deptession upon starting high school), and took until 16 to get a disgnosis.

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GailCindy2 · 14/12/2019 10:04

Pressed enter too soon.

Maybe your daughter seems normal at school because reception is quite low intensity. But kids do tend to take out there frustrations in a safe place like home.

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GailCindy2 · 14/12/2019 10:02

My son had a diagnosis of autism from 3 years old but getting a statement was harder. It was refused in (private) nursery and reception but then by Xmas Year 1 his teacher said he really needs one. He said that is when the proper work and expectations start and then kids who are struggling become more obvious.

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Littlebluebird123 · 14/12/2019 09:44

@Tiredmum1511

I'm sorry to hear of your struggles.
I'm a teacher and in my current class I have a girl DX ASD who is able to cope with the work at school, but really struggles with transitions and social groupings. No problems at home.
I have another girl (also DX ASD) who struggles a bit with the work but is almost perfect in class. She has huge meltdowns at home.

It's really common to present in different ways. But the issue schools often have is that we can only comment on what we see. It doesn't necessarily mean they don't believe you, but we can't evidence it. (Sadly, there are those who won't believe you, but I hope that's not the case.)

That being said, communication with the parents is crucial. I try to make sure that both the parents are involved and that they let me know when things have been an issue at home or if they will be an issue. (The first one I can see the issues so can try to take appropriate steps, the second one I rely heavily on the parental input.)

If I were you I would try to establish more frequent communication with the teacher to see if there are any patterns you can identify. (For example, one of my children finds sporting events in a hall completely overwhelming. She would be ok at the event but unbearable at home so she doesn't attend those events.)

You may also find the Sen boards more helpful. Plenty people on there with much more experience.

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Tiredmum1511 · 14/12/2019 09:27

Thank you. I have found the info on the STAR chart and will be keeping record if anything to show school that I am not poorly handling it.

Its definitely the doubt I am feeling of how I handle things.

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aurynne · 14/12/2019 09:13

Oh, and my symptoms were obsessions (very limited and obsessive interests), ticks (contracting the muscles on my throat, squaazing my ear), compulsions (biting on wool, which made me feel physically sick but I felt like "someone told me i had to"), food issues (very limited range of foods, and specific brands, I would eat), echolalia, perfectionism in anything I started, to the point that I would rip apart a whole assignment or piece of work and start again if I drew the wrong line, or coloured 1 mm outside of the line (even at 2-3 years of age), inability to make friends even though I was yearning to have even one, unable to make small chat or say the appropriate thing to my peers (I always got along better with adults), texture issues (I felt most fabrics were itchy, wearing my uniform was torture and my family had to line every top and every skirt), inability to understand empathy (until I taught myself how to be empathetic)... I dreaded school, but my teachers never offered help, they didn't think there was anything wrong with me as I had excellent grades and was quiet, polite and respectful. They mostly ignored the bullying I was subjected to, or perhaps they honestly didn't see it as they were busy dealing with more troublesome pupils. I used to love holidays, which I would spend alone reading, playing on my own and going for walks with the dogs, and get seriously depressed when they finished and school was looming again.

I will never understand or forgive my mother that she never, ever noticed or did anything about it.

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Grasspigeons · 14/12/2019 09:06

Sorry that was to quietcrotch - My other advice is keep records. The STAR chart i mentioned above for home and literally everything the schools says/does.

Tiredmum1511 - maskings not coping. She isnt coping at school she is delaying her response. There are things you can do to help her cope but being more forceful isnt one of them. Flowers
I hated the stage you are at, where i was 80% sure my DS had autism but there wasnt a disgnosis and some professionals werent seeing it. It put this doubt in my mind on how best to tackle things. Once i had a diagnosis i had the confidence to parent an autistic child in ways recommended for autism. In hindsiggt none of the autism strategies would have harmed a NT child so i should have just gone for it.

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aurynne · 14/12/2019 09:05

When I read this thread I feel I found my people. I still have nightmares about school. When, at 32, I told my mum I had been reading about autism in girls and I thohght I may have Asperger's syndrome, my mum looked at me with disdain and exclaimed: "Who the hell put it in your head that you have Asperger's, or whatever that is? The only thing wrong with you is that you were bloody weird!".

She is a (now retired) school teacher. I really had no chance, did I?

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Fatted · 14/12/2019 08:46

I'd say even with boys, the school aren't quite on board with it all at this age, if she's only in reception.

My eldest was 'fine' in reception. But he has always been very routine driven, doesn't cope well with changes, he literally paces the house when he gets home. In Y1, some concerns were raised about his ability to concentrate. But he was reading at a much higher level, so they weren't too bothered. Now he's in Y2 and work etc is getting more stressful, it's becoming apparent he isn't coping. It has helped that his teacher in Y2 is the same he had in reception and behaviour she assumed he would grow out of then remain. We're just starting the assessment process with him now.

My youngest is just starting reception and hardly speaks in school. He's always been very anxious in social settings. He is obviously bottling it up because at home he turns into an absolute monster in the evenings. He is having speach therapy just now because he stutters, but I think there is a lot more behind it he may need help with later.

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ladydoris · 14/12/2019 08:44

Yup. There are a lot of ultra functional out there superb at there job who have to make very careful thinking when they switch. ( I'm in recruitment).

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Grasspigeons · 14/12/2019 08:33

So the key things i learned on my autism course as a parent (cygnet) it was 24 hours.
Use lots of visuals- school should do this too. Its cheap- offer to make the visuals if they are too lazy. So things like timetables.
Processing will be slower even if they are verbal so give loger to respond to instructions. So give an instruction and count to 5 in your head.
Use social stories to prepare for new thing like a mufti day
Its disorderded development or delayed devvelopment especially socially so structure playdates and support them like you would for a younger child.
Find them some neuroduverse friends too - they need a peer group.

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YouJustDoYou · 14/12/2019 08:26

Now I've learned to though but masking is exhausting. Home is where I can relax.

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YouJustDoYou · 14/12/2019 08:24

I couldn't.

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Tiredmum1511 · 14/12/2019 08:19

@QuietCrotchgoblins this is what I am struggling with too. Part of me thinks if she can cope with these things at school then I need to become more forceful in making her cope with them at home too (which seems to be the school's stance).

I'm convinced she will mask during the assessment too 😡

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MollyButton · 14/12/2019 06:15

Sometimes it is the school doesn't want to see the issues.
I was being called into school on a weekly basis over my DD's behaviour, asked such classics as: "How do you cope with this behaviour" when I didn't see the behaviour they were. BUT school were still shocked when ASD was investigated - an Ed Psych had spotted it in 30 minutes (actually another one had spotted it in 10 minutes observation).

Actually it could have been partly that the Head was trying to "manage her out" and realised the diagnosis would wreck that. But I know class teachers were genuinely surprised.

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QuietCrotchgoblins · 14/12/2019 05:50

What advice do people have who have been through this for children who mask well at this age apart from seek diagnosis?

My almost 5yo has many of these traits. Her behaviour is perfect in school but she meltdown at home, sometimes violently. She has always had friends but in the new school environment I can see she's finding it hard to navigate relationships with other girls and gravitating towards boys ( riding bikes/ chasing each other etc) the school.is very nurturing and child centrered.

She's always had sensory issues. I suspect my DH and family also have traits of asd. They are high achieving but struggle socially.

I wouldn't seek diagnosis at the moment as she would again mask in any environment but I know it will get harder for her. To some extent that collapse after school can happen for neurological children but when does it cross the line?

So I try to:
talk through recognising feeling and reading feelings and behaviour in others
Keep life as stress free as possible outside school
Foster friendships outside if school- particularly sport related (as they seem to be easier and she likes sport)
Try to support sensory issues e.g. give her a sucky type water bottle, little tent in her room with lights etc

So those of you who have lived through similar masking/ collapsing at home gWhat else would help?

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Tubbymummy44 · 14/12/2019 00:31

Absolutely. My son is 5 and absolutely masks at school-he struggles academically, but is quiet, polite and kind. At home he can be aggressive, always loud, kicks, hits etc. Basically comes home and lets it all out. Its emotionally exhausting for them.

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