To wonder just how well girls with ASD can mask?

[Tiredmum1511]

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

DD(4) is a masker. Fobbed off by GP and HV for the first few years. Her speech and language is extremely advanced and this has always been a hurdle for us. SENCo on board but unable to take things further until the mask slips so we're playing the waiting game.

"Friendships" are based on wanting to fit in. She mimics expected behaviours. Academically she's advanced.

At home, she has no imagination and doesn't play with toys or role play at all, because "it's not real, Mummy." She falls apart every day at school. Changes in routine have to be mapped out for her days in advance. She has routines of her own, so for example she will wash her hands and dry them three times exactly after using the bathroom.

Her sensory issues are numerous (sound, texture, clothing) and sometimes cause extremely dangerous responses such as running in front of cars to avoid dogs barking or lawn mowers in gardens because it hurts.

She has food aversions and a very limited diet. If her food is arranged incorrectly she will go hungry. If the food is incorrectly arranged for three days she will not eat for three days.

She doesn't feel hunger, warm or hot temperatures, or have an appropriate pain response.

She is prone to violent meltdowns.

She doesn't respond to discipline in any way shape or form. For example reward charts have no effect, because she doesn't learn to associate repeated good behaviour with the reward, and praise for good behaviour has no effect beyond that point in time.

Her gross motor skills are terrible. Her fine motor skills are improving albeit slowly.

She rubs hard smooth objects around her face, and puts non food items in her mouth.

She has fixated interests, one of which is a collection of objects, another is sorting/organising. The third is clicking the switch on a fidget cube, which she can sit and do for two hours. It's the best £5 I've ever spent on her. She even takes it to bed, and must have it when doing something which requires sitting still, such as book time, or meal times.

But it's all normal according to GP/HV. Because "she communicates so well for her age!" 🙄

Falls apart after school that should say.

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.

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?

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.

@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 😡

I couldn't.

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

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.

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).

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.

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?

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.
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.

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.

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.

@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.

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.

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.

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.

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.

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.

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.

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.

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

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.