Feeling like nursery are really pushing to label my son

[Dumbledormer]

This is a difficult post. First of all I hugely like and respect my DS’s nursery workers but I’m getting a lot of mixed messages and I feel like I’m going crazy.

DS is two (literally just turned last week) and was born 5 weeks premature. He’s been going to nursery two mornings a week since he was 1. Nursery flagged a concern with me that he wasn’t responding to his name at around 18 months and that he walked on his tiptoes a lot and that these can be early traits of autism. Contacted HV who came out to assess him and was not hugely concerned. Advised to “watch and wait”.

Did my own research, panicked a lot then calmed down and looked at things to do to help. Managed to get a private speech therapist a couple of months ago who found him to be speech delayed on meeting him but didn’t think he was autistic (although mentioned later that she now wasn’t sure as nursery had a different view when she spoke to them). Anyway shortly after this, we broke up for the summer and he’s come on in leaps and bounds. Always responds to his name, follows instructions, has a handful of words that he uses functionally. Points to request and points to share excitement at something he’s seen. Really enjoys being around other kids, although doesn’t play with them unless they chase him or he chases them but will try to copy what they do. Eye contact is great and loves people copying him. Still walks on his tiptoes but this has got less and less. Doesn’t appear to be phased by changes in routine at home, eats well although can be fussy with new foods which I think is fairly typical and he sleeps well.

Nursery’s concerns before we broke up for the summer was that he wasn’t happy when they changed the layout of the room one time and moved the toys back to their original place i.e. struggles with change. He’s never done this at home and we are in the middle of renovating so stuff is moved round a lot. Obsessed with water play and struggles to engage with others when water is about (it’s fair - he still loves it) and that he’s very sensory seeking, he won’t sit down for story time and wants to be off playing with toys and no spatial awareness.

He’s been back at nursery a couple of weeks now and is doing two full days. The most recent comments are that he’s just picking at his lunches (which are free at nursery) when all the other kids are eating their full meals and I’ve been emailed a list of SEN toddler groups to take him to as they think it’ll be good for me to get more support with him as he’s clearly struggling.

Spoke to HV yet again, who is still unconcerned but has agreed at my insistence to now refer him to SALT and talk and play.

He’s not perfect, he’s a toddler and the things I find difficult are the frequent tantrums when he doesn’t get his own way and when being made to wait. He really likes to be very theatrical and throw himself to the floor and scream but these last seconds and always end as soon as he gets what he wants or is distracted by something else. His new thing is crying if strangers speak to him and most recently covered his eyes when an elderly gentlemen tried to talk to him. Again, all quite normal I think and he usually warms up to strangers eventually if they give him some space initially.

Basically, I’m trying to be as open and as realistic as I can about my son’s strengths and weaknesses, I’ve thrown myself into researching kids on the autistic spectrum and I just really don’t see it in my DS.

BUT nursery do! Am I just completely in denial? How can I question their collective expertise but it just sometimes feels like they are talking about a different child. They haven’t always got it right either, I remember them flagging concerns that he had PICA when he was a lot younger and shoving everything he touched in his mouth. This also made me worry like mad but he just grew out of this behaviour like most kids do.

Sorry for the absolute essay but just wondering if anyone else has experienced this with a nursery before?

You need to remain open to BOTH options, OP.

Autism doesn't necessarily look like you think it is. The staff are trained and have experience of other children with needs, you don't.

You seem like to want to bat all of the concerns away and insist there is no issue but you need to accept that there may be.

If staff agree when he starts school then you need to get him assessed, in my opinion. That might not be what you want but it is what's best for him.

Some children do indeed mask outside the home and let it all out in their safe space, but every autistic child is different. I had the opposite experience to you OP. I knew my DC was autistic but was told for nearly 10 years, by numerous teachers, heads. Drs etc. that I was wrong. My child is now diagnosed and not in school, partly due to the damage done by years spent masking. However, if you met them you would have no idea they were autistic....

Do you think autistic people can't get degrees abroad?!

🙄

HV sounds woefully misinformed. Some autistic children mask, some don't. Home is usually a less challenging environment, calmer with more one to one attention and the presence of their main carer(s) who they know and trust. It makes sense that nursery/preschool would be more challenging. And I would say that a 2yo is probably incapable of masking whereas a 6yo, for example, may well be able to mask (mine does).

My ds's nursery did this. He wasn't SEN in the end, just a very, very high needs kids with speech delay due to maternity not cutting his tongue tie.

@HeadAgainstWall0923 you've totally described my DS. No meltdowns or tantrums at home he was good as gold but when he started school he would hide under the desk and refuse to engage.

OP, my daughter was very prem. It took years for her to 'catch up.' She didn't speak until she was 3. She had physio and hydro physio weekly- this helped improved her spatial awareness. She tiptoe walked but the physio helped with this.

I am not in a position to comment on the SEN needs but I can say that it took a long time for her to catch up with the other kids. When she started school, she was, by far, the smallest child in the school. However, the school took this into account and they were brilliant; they took into account that developmentally, she wasn't in the same place as the other children.

Honestly, just work with the nursery on this. At the end of the day, if your son isn't autistic he won't get a diagnosis of such but there is no harm in exploring the concerns that nursery have. I would let nursery do any referrals they feel are necessary and attend appointments. Eventually your son will either go down the diagnostic pathway, or he won't. He won't end up labelled with something he doesn't have.
And if nursery are happy to put strategies in place to help his development this can only be a positive thing. Does he have an IEP?

Or, indeed, do they think that autistic kids can’t be academically able or gifted?

They can: it’s what the Americans like to call twice exceptional.

My autistic girl has just started grammar school, where she’s on the SEN register. The main reason I wanted her to go there was because I figured they’d have a lot of experience with the kind of brainy ND kid that gets passed over in comprehensive schools. I was right. Because there are a lot of brainy, quirky kids out there with autism, whether their parents are aware or not. Sometimes secondary school is when the wheels fall off and, after a mental health crisis, they get a diagnosis.

Look around MN and you’ll find so many threads where parents of secondary age kids say they’re finally seeking a diagnosis, despite knowing for years that their child was probably autistic, but because they were “fine” and “not struggling with anything”. Except now they weren’t fine and life was incredibly hard.

That's why I’m so passionate about ND kids being diagnosed. They don’t need to be in need of support at primary school to warrant it. At some point, they deserve to know who they are. Not spend the first fifteen years of their life trying, but failing, to fit in with their neurotypical peers.

Sorry @Dumbledormer that’s kind of off topic and not levelled at you directly.

"That's why I’m so passionate about ND kids being diagnosed. They don’t need to be in need of support at primary school to warrant it. At some point, they deserve to know who they are. Not spend the first fifteen years of their life trying, but failing, to fit in with their neurotypical peers."

This. So much this! It's exactly why I've been fighting to get my bright 6yo assessed.

It’s frustrating when “professionals” refuse to see your side, which is where it sounds like your post is coming from.

My dd had a teacher who seemed to pick on a couple of dc per year and diagnose them. His son is severely autistic so he felt he was an expert. While I appreciate he had knowledge, dh and I felt invisible to him and what he described was so different to what we’d seen. He actually told us all her previous teachers had done us a disservice by lying to us. That was said in front of the head teacher. she was in year 4 and the family psychiatrist assessed her, sen lead assessed her and they found nothing.

year 5 we went to parent’s evening early on and the teacher said “I’ve been looking over these notes from last year and I have to say I’m really confused because I’ve not witnessed anything her previous teacher mentions. Could you talk me through so I can try to understand?” We were like “actually no because we never understood it either. Can we just start from scratch and go with your observations because last year was really hard?” And that’s what we did.

Dd is now year 11 and that teacher stopped teaching 2 years after she’d had him and part of that was his constant desire to diagnose dc.

while there are many experts who can advise, it’s good to keep an open mind but you know your dc best so use all the information to steer you.

Thanks everyone for your messages so far. I’ve read them all. I am trying to make sure I fully engage with the nursery’s concerns and have followed all their suggestions. I’m aware I may be more sensitive when they bring stuff up as I only ever seen to get negative feedback about my wonderful boy and I try very hard not to feel defensive and accept what they are saying but it’s tough. It’s things like they have to strap him in a low high chair when eating so he doesn’t wander off or he has to wait in a separate area to his peers at pick up and although they are claiming this is for my sons benefit, I can’t help but wonder if it’s just easier for the nursery staff and is it really benefiting my DS to segregate him in this way? They used my private SALT report to get 1:1 funding for him and yet it feels like he’s automatically not included in things the other kids are doing because it’s known he’ll struggle.

They used my private SALT report to get 1:1 funding for him and yet it feels like he’s automatically not included in things the other kids are doing because it’s known he’ll struggle.

I do think nurseries and preschools often take the piss when it comes to claiming for extra funding, then using said funding to pad out their coffers and not on meeting the needs of the child.

I would be concerned about the need to strap (ie physically restrain) a child!
why does he have to be segregated?

Yeah, I wasn’t happy about that but they said they have to strap him in otherwise he climbs out. Not sure why they can’t persevere with him eating at the table with everyone else. He manages perfectly fine at home and at his playgroup (but I suspect this is because they are given snacks at playgroup so it’s more incentive for him to stay sitting).

They keep him separate to the other kids at pick up as waiting is not his strong point and will throw a tantrum if prevented from going out the front door. No aggression but as I said upthread his tantrums are on the theatrical side and nursery don’t want him to upset the other kids which I understand but they made this decision after the first day back in September and I feel a little like they are not really giving him much chance to adjust.

Waiting is a skill and there are different ways to make adjustments. Our nursery- who as I said I didn’t sufficiently appreciate at the time-found that DC struggled with waiting it and handled it by letting him go first on days that were ‘bad’; within the first five on better days. Rarely or never last. But they didn’t segregate 🤷‍♀️

Hmm… reading your update, OP, it does sound like overkill.
are you sure this nursery is the right place for him? It’s the fact that you only ever hear negative feedback that I’m concerned about.
it’s ok (and perhaps even quite helpful) for them to query autism if they’re seeing some signs. At the same time it’s surely very difficult at this age to be able to tell. I’d imagine by the time he is 3 things will be clearer, but at 2, their language is developing at such different rates and that’s ok. I don’t like the sound of them segregating him. If he’s got some issues they sound very subtle and not major problems. If you have any doubts you could look into alternative childcare arrangements and see what else is out there?
when my dd went to a forest school nursery, I only ever got negative feedback about her there. Got positive feedback from her playgroup who found her delightful. She can still remember forest school and says she hated it. (Unsurprisingly she liked playgroup). They were so fixated on toilet training and the only feedback I ever heard was about that. Literally nothing else. I’m not saying your son is unhappy at his nursery, not at all. But just that he still has another couple years til school and maybe if this place is making you uncomfortable you should think about changing. Even if he does have ASD do they need to make such a song and dance out of it? Even kids without neurodivergence wander about when they’re not meant to. He’s only two! At that age the ND isn’t necessarily as big an issue because less is expected of them as at school. It makes me wonder if this nursery is running too tight a ship and not the right fit for your son? I realise nurseries do have to be super organised to run smoothly but maybe they’re too fixated on kids ticking boxes. Surely it should be a place where he can just “be himself” before the more formal learning of school. I could be wrong, but just a thought.

Hmm, nursery might be wrong. And I say that despite having DC who are neurodivergent, and knowing quite a bit about autism.

Something just doesn’t sound right. None of the nursery staff are qualified to diagnose and they should be very careful not to cross the line and fancy themselves as medical professionals when they are not.

You can get staff in education, or in health and social care, who just really overdo it sometimes and overstep the mark (I have a disabled sister who has spent a long time in residential care, and my DM has had to deal with a few managers like this over the years)

Is this coming from one particular manager?

Is moving your DS to a different nursery or child minder an option for you?

I would remove him immediately. Something sounds wrong.

Find another nursery - he might be neurodivergent, he might not be, but your gut is telling you something here.

I wouldnt be happy with this at all. At worst, my nursery needs to be reminded to keep me in the loop with things like IEPs but they do everything they can to include DD3 e.g. sensory rooms when she's overwhelmed, working with her on communication, using ear defenders etc. Your nurseries approach sounds really dismissive.

Also to add DD occasionally goes through periods of trying to wollop other children. Never have I been made to feel guilty or have they implied DD is a problem child - they acknowledge its a form of communication, worked out what the trigger was (other children crying), always could then swoop in to stop it in advance and work with her on explaining emotions etc.

It might be worth looking at other nurseries if thats an option? If not, ask for a meeting with the nursery manager and SENCO and ask for a written report on what they are doing to support DS.

Does the health visitor see your DS when he is around other children? My DS (ASC diagnosis) was very different with an adult - especially one to one, especially a familiar adult like me, especially an adult who was very focussed on him and good with children like a health visitor - from how he was in a group with other children, especially a busy group. Does your DS have sibs?

she said he would be worse at home than at nursery as autistic kids often mask. It’s helpful to read this isn’t always the case.

Yes, some autistic kids can and do mask. That's recent understanding, but many can't and don't, that's the oldfashioned knowledge that was used to spot kids with ASCs. The HV has thrown the baby out with the bathwater.

The thing is, the things that bother your DS are the same kinds of things that bother kids who have ASCs. Better to pick it up now than later. Some kids are naturally calmer and don't hit out but still have ASCs, for other kids aggression (or other big problems) start later, when the demands and expectations go up and they are feeling more frustrated and anxious.

One my nephews was very prem. He doesn't have an ASC diagnosis as such but he does have a range of issues that include some ASC characteristics. It's not so much about the diagnosis or label it's about identifying the support he will need to learn and grow and socialise.

I've been through this when nursery brought up concerns about my child at the age of 3.
He's now 7, under the school senco and awaiting assessment/diagnosis (waiting list is 2 bloody years.)
I specifically remember them saying that he didn't want to sit down at story time and instead wanted to go outside and play the whole time and thinking well, he's 3 and that's normal? And it can be normal for some children. But as he's gotten older he's struggled with school and I'm now grateful that school want to help him. Years ago kids probably would have just been told off for not being able to sit still whereas he gets offered fidget toys and wobble cushions to sit on!

I really still do not feel like there's anything majorly wrong with my son when we're at home together and he seems happy. I'm aware his attention span isn't great but it's not an issue at home. However at school it's a completely different environment and like nursery, it tends to be those environments where children struggle the most and it's the reason people sometimes choose to homeschool neuro-diverse children. I see it like the education system and who my child is aren't compatible, but between me and his teachers it's our job to make the school experience better adapted for him in little ways so he can succeed. And diagnosis can help assist with that.

It is a lot to get your head around at at the start but I've found that I'm actually grateful for potential "labels" because otherwise my child wouldn't be understood properly in school.

We had similar. They were so pushy to label him.

It was ridiculous. Meetings, 1:1s, EHCP, "intervention" and observations. The council were involved and went to nursery to "observe". It was endless.

DS started school. No more issues.

He even saw a consultant who ruled out everything and said "this is happening all the time. They get younger and younger. I spend most of my day with 9 healthy and happy children. And then 1 child comes in who clearly needs a diagnosis"

Don't stress OP.

Our school Reception Teacher said that she finds nursery workers busy bodies who like to prove they're the experts in this stuff to try and prove they're worth better pay.

I thought it was rather harsh at the time. I don't share that view.

Jellycats4life completely agree with everything you have written. Prompt diagnosis is so incredibly important.