Masking - advice

I’m wondering if anyone else has experienced this with their child as young as 4.

We strongly suspect our 4 year old son may be autistic (possibly high masking) and we’re currently waiting for paediatrics after being referred by our Health Visitor. She was incredible when she come to the house.

At home, we see huge struggles with transitions, sensory issues around clothing, meltdowns leaving places, panic around change, bolting, emotional dysregulation and needing far more support than other children his age. I physically have to carry him to the car while he screams and panics about leaving places. Don’t get me started on getting him to nursery. The anxiety of nursery will start the day before he’s due. I’ll have intense meltdowns. Anxiety. Stress. No sleep. It’s so sad to witness. I then have to physically restrain him to dress him and carry him to the car kicking and screaming, I’m struggling as his mom.

But nursery have completed their report and describe him as basically the “perfect” child. Reading it honestly felt like they were talking about somebody else entirely. The only small thing they added was he arrives to nursery crying and screaming before he’s handed over. And he sometimes rocks back and forward.

Now I’m feeling really sad, confused and worried that nobody will believe us because they aren’t seeing the same child we see at home.

Has anyone else experienced this?
Did your child mask at nursery/school but completely unravel at home?

I think what’s making this harder is feeling like I’m constantly trying to explain that these aren’t just “tantrums” or difficult behaviour. Nursery say regularly “William. Be good for your mom” he’s such a good, kind boy, he’s just struggles with sensory and transition regulation, it don’t mean he’s being ‘naughty’. It genuinely feels like he’s overwhelmed and struggling. I just want to help him and I feel really deflated.

Would really appreciate hearing from other parents who’ve been through similar and any advice you can give. Heart️ 

thank you 

Parents
  • Oh yes definitely, you aren't imagining it. They can feel such pressure, and when the other kids are loud and noisy, your child sitting quietly and not complaining is seen as perfect. 

    My daughter was very unhappy in nursery, but as she did the same thing whether happy or sad, just sat at the art table the whole time, they thought she was perfect. But she was struggling a lot, especially as her year had a lot of badly behaved rowdy boys, so they didn't pay any attention to her. She had toilet accidents all the time as she was scared to even use the toilet. And it was telling she was never in the pictures they put up for the parents. You might get a glimpse her sitting quietly in the background. Her last parents evening at nursery, her key worker couldn't say anything about her other than 'she's so quiet you forget she's there'. 

    I would try push to see if they can actually say anything meaningful about him, as sometimes perfect means he doesn't require attention from them so makes their lives easier. I mean I even remember being 4 and going to a playgroup and the best place to be was the book corner as it was the quietest place furthest away from the noise that I couldn't bear. 

    His reactions are telling you he isn't doing well, so try push the staff a little harder for a more accurate report.

  • It breaks my heart to think of how so many of these children are left to struggle in silence because teachers aren’t picking up just how much they are suffering. If I was more capable of doing this I’d set up an organisation run by autistic adults who could go into schools and give training to teachers about how to support autistic children. Another great option would be to have more schools that actually cater specifically for autistic children - for some children I think that would be the best option. 

Reply
  • It breaks my heart to think of how so many of these children are left to struggle in silence because teachers aren’t picking up just how much they are suffering. If I was more capable of doing this I’d set up an organisation run by autistic adults who could go into schools and give training to teachers about how to support autistic children. Another great option would be to have more schools that actually cater specifically for autistic children - for some children I think that would be the best option. 

Children
  • Totally agree. Before he started I actually asked for a meeting at the school and asked if he could defer for a year - and they said no! I even had people saying to me “he looks really young to be starting school” because he was really small for his age and had a very cute little face - almost toddler like in a way. He’d been born nearly a month premature too, and I think that was also something to consider. And one of the saddest things was that he was the most happy and contented little chap ever until he started school - he was such a chilled little boy - just a happy little day dreamer really. So gentle and sweet (he’s still gentle and sweet even now!). I think school was just such a shock to him - the noise, people being naughty and loud, or just not nice in any way. 

    I agree with you - in an ideal world the whole system would be redesigned, it’s a bit of a jungle let’s face it. One size fits all is a very crude approach when you’re dealing with human beings of any age - let alone very young children. For myself and my son though we can’t change the past - all we can do is deal with where we are now. My son spent about 18 years in all in schools and colleges - not talking barely at all in any of them - and that’s something that can’t help but take a toll on a person. Many times I asked him if he wanted to just stop going but he didn’t want to be home schooled - he desperately wanted to just be ‘normal’ and be a part of normal life by going to school like everyone else, and having friends and a girlfriend and all the things everyone else seemed able to do. He never stopped trying. But there’s no question that in the end he came away feeling that he had failed, and that he was ‘useless’ on some level, and no amount of therapy or love and affirmation from his family can ever fully change the underlying view he has about that. Nothing I say can take all of that away. My hope is that we can get to a place where he can build up his confidence by some other means, and increase his confidence socially so that he can one day have friends, hopefully a girlfriend. But it’s incredibly hard when he just can’t talk to people - and hardest of all for him to maintain his sense of self worth when he feels he cannot do this thing that he sees everyone around him doing so effortlessly (seemingly anyway). It breaks my heart to be honest. I’d kill for him, but I can’t do this for him - no matter how hard I try. 

  • It's so sad, what a huge difference if the teacher instead of saying he was fine, could say, what about waiting till next year? I think parents and teachers should have that option, to say it's not working out, rather than the pressure for them to keep going regardless of the harm it was doing. (I realised when she left that nursery that I wish I hadn't sent her there at all.) And yeah, you feel pressured and a failure as a parent if they aren't going to school. And some areas, it sounded like if you didn't send them they would lose their place and somehow that would be it over for education and their future so the pressure is crazy. (I had started reading articles about defering).

    It's one thing I think the Scottish system they have now is really good - they have to be 4 before the 1st March, rather than September, and that 6 months meant both my kids got an extra year before having to start school, and the other factor is newer, now if they are born within a few months of that cut off, you can choose to auto-defer no questions asked, and quite a lot do wait a year. And you can still apply to defer if they were 4 up to the September before, and it's not deficit based. When we were in England, it felt like there was a big pressure to get kids into school to free up parents to get back to work, not if it's best for any child. I strongly believe now 4 is too young for school. I saw a study saying even typical children who are youngest in class (summer born they called it) have worse life outlooks than the oldest in their year. (From constantly being out-done by their more developed classmates). I think for autistic children this is even more so.

    We moved when my son was 3 1/2  and having to look around at schools for him was a horrible feeling. I remember visiting one and the reception room was like nursery, so I asked how kids cope with moving up the next year to a traditional classroom, and the teacher was honest and said a lot found it very hard and struggled.

    You could really redesign education completely to actually fit children's needs and I think it would be so much better for all. You could split them by learning style, the ones that need to be active and loud in a different class to the ones that need calm and quiet and nurture. Coming from a small school setting, you can see that you don't have to stick to age groupings then, and have groups based on their needs and levels. Different schools entirely would be even better.

    I think you were definitely right that school can cause tremendous long term harm if it doesn't suit the child. I too wish there was more options and the schools were able to say when kids weren't coping and actually find solutions, rather than just saying they are fine.

  • My eldest went on to do well academically at school, and made a few friends. But I wish it had been easier for him to- he found the school work easy - but the environment and the atmosphere and social side of it was always stressful for him. But my youngest had Selective Mutism for his whole school life, didn’t really have any friends, and the whole thing was pretty disastrous in many ways. And he’s still living with the consequence of that now in terms of some of his mental health issues. He doesn’t like to talk about school at all now - for obvious reasons. Also he’s very bright but he didn’t do very well exam wise - and I think that was partly due to the fact that he could never relax in school, or ask questions or ask for help ever. He’s the most wonderful, kind and gentle person - and I’m amazed that he’s managed to maintain that nature when really I feel he was badly let down by the system, by his teachers, and even by me - because even though I was doing my absolute best for him - and I had to fight tooth and nail to get more help and support for him in school - deep down I don’t think I should have kept taking him in in that first year. He’s wasn’t ready, he obviously couldn’t cope, and I just kept taking him in day after day after day. I simply did not know any better.