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?

Hi Op, that sounds quite frustrating for you, pushed between different opinions.

I’m wondering what experience nursery have with ASD/ADHD etc? Do any of the staff have kids of their own who are diagnosed? Or do they have a high percentage of SEND kids in the nursery? If so, I think I’d lean towards trusting their judgement more than the HV as they will have more experience with what they’re seeing in your DS than the HV is likely to have.

It sounds as if you also have concerns about your DS’ development, in terms of language especially? I think it might be worth writing down your concerns, and getting nursery to do the same, and speaking with your GP. No harm in exploring what’s going on a bit further.

My DC was a toe walker and I eyed him sideways for a while wondering if that meant anything before any other signs became apparent. We had concerned nursery workers pointing out things they had noticed and I actually dismissed it for several years. Until I was able to see it.

Nursery are usually very good at picking up on autism, more so than a health visitor so I’d be inclined to believe they are seeing something you are not.

Ask for an integrated review from the HV service, yourself, health professional go to nursery and a joint review is done between ages of 2-3.
That way all views are heard, see if any recommendations are done.

I’d be more open to listening to nursery over HV. In my area HV try the quay and see approach in an effort to keep waiting lists etc down not necessarily what’s best for the child. I have an autistic son so have been through it

His 2 year review will be due soon. Ask them to complete an ASQ SE as well as the normal ASQ. You will have to call to request this though, not ask on the day.

My dd's nursery flagged up some things, only they handled it in such an unsupportive way that it upset me, and I kind of wrote it off as just being down to the environment. She's now a teen and the things they flagged up did turn out to be significant.

I guess childcare settings see so many kids, they have a good idea of what is typical and notice any behaviour that stands out. Not that they'll always be right though. They see your ds a lot more than the HV does, so I wouldn't write it off on that basis, but maybe just try and keep an open mind.

If you think there's a possibility your son is autistic, it might be worth considering putting him on the waiting list for a proper assessment - in my experience the waiting list was three YEARS, though I think they are getting shorter now post-covid.

Nursery has the benefit of seeing him for longer periods, in different circumstances and how is is in interactions and comparison with other kids. HV only gets a snapshot, and of course it is cheaper not to start any diagnosis or intervention.

Thank you, yes, I’ve heard this from other parents as well which is why I pushed for him to be referred to SALT even though HV was reluctant.

You need to do much more research if you are still thinking in terms of your son being 'labelled'. It is a diagnosis, not a label.

The nursery staff will have vastly more experience of seeing children with different presentations than you (unless you work in the field). They are also seeing your DC over longer periods etc. than the HV. Listen to them and be thankful that they are alerting you and not sweeping concerns under the carpet.

Your son may or may not be autistic, or ND in some other way. However, the sooner you find out one way or another, the sooner support can be put in place in his next educational setting.

Hi Op - I have a child with autism.

I have to be honest and tough as it might be for you to feel you don't agree with your childcare provider - the nursery have a very good idea of what the range of neurodiverse/ neurotypical behviour is at this age.

If they feel your child needs additional levels of support compared to the majority of children the same age - then they will already be making allowances for all children being a bit different etc.

In reality it is the exact opposite of nurseries wanting to label a child - generally it's very difficult to get nurseries/ schools to accept that a child is neurodiverse unless they are clearly showing the signs.

There is no harm in keeping an eye out - and in accepting support that might help

Thanks, I didn’t realise there was another ASQ as well as the usual one. I will request this. I did ask HV if we could bring his review forward but she said they won’t see him until he’s at least 2 years 3 months.

also agree I would not particularly expect a health visitor to have specialist knowledge in this area - particularly compared to nursery staff who see hundreds of children all of the same age day in day out.

This isn't about a label - they are just trying to help get theright support to meet your childs needs.

I would change nurseries if I was you!
Your son sounds exactly normal (or all toddlers I know have autism..)

Yes this. I had a very similar experience with preschool and reception for my eldest DS and was very upset (and in denial) about it at the time. They were right, though, and DS did later receive diagnoses of ASD & ADHD.

In our case I really think I would have picked up on more myself had I had either DS2 or DS3 (both NT, confident, sociable, hit all milestones etc) first. But DS1 was my first and for a parent, your first child is your 'normal' and to you, their development is what you know.

Early years settings see so many children and they will generally be very clued up about the little flags that may or may not turn out to be significant. It's just that it is not always handled sensitively. I was devastated when DS received his initial diagnosis but I am very grateful for it now. DS is now 19 and living happily and independently at uni studying a course he loves, but he absolutely IS neurodiverse and those early years specialists saw what I did/could not at the time.

If your son does end up being assessed/diagnosed, OP, try to think of a 'label' as being a signpost for support and understanding, rather than something negative. Not just for those working with him but for him as well as he grows up. My DS is happier and his mental health is stronger because he has a clear understanding and awareness of why he is the way he is/finds certain things hard etc.

Apologies, I know it’s a diagnosis and not a label and I am grateful nursery are taking it seriously. It’s just difficult to reconcile their views and concerns with my own experiences with DS. I also have a friend who is a HV (not mine) who we see regularly and she was also surprised at the nursery’s concerns.

I've had similar, when my son was 3/4 he went to a local preschool with an outstanding reputation but they spent the whole year following him around with a clipboard and making referrals. He toe walked and enjoyed playing with trains and sand, they didn't really have any other 'flags' and those aren't really flags anyway. They wrote reports and made things up, a SEND person from the council literally told me that what I thought were conversations with my son weren't conversations, he'd just remembered a set of phrases. It was horrible, crazy making and incredibly stressful, we went through all of their hoops with as open a mind as we could until by the end of pre-school we say a very experienced paediatrician who dismissed all of it. We also saw two SALTs who also offered no intervention. Now my son is 11, house captain at school, very popular, very bright and has never had any difficulties with learning or socialising. He does still toe walk a bit! But then so does Jamie Dornan so it's really not always an issue. We're all different people. To be honest, most of all I wish we'd moved him straight out of the pre-school it's my biggest regret and we didn't send our younger child there. After that the person in charge was sacked from a different complaint and Ofsted downgraded them. Of course if there are concerns that's fair enough, but if you're not listened to as a parent and your experience as a mother is just put down to lacking knowledge/being in denial then there's no way you can go from there. In my experience once people have made that judgement, they don't change their minds and personally I think that's the most worrying thing about SEND in early years, we should all be open to the idea that our judgement could be wrong and take into account all the evidence (including SALT, Paediatrics, HV, parents) not just what confirms our judgement. I think parents do that more than we're given credit for, but other professionals need to do the same. If your son does need help, they still need to listen to you and support you, not leave you feeling like this. Good luck!

It's better to get an early referral and find you don't need it than wait a few years and then wait ages for a referral when your worried if SALT have no concerns you will be reassured

Hi OP, I went through something similar with my DD when she started school.

She'd had some medical issues and so found school a bit of a struggle. The SENCO was convinced she had autism. I disagreed but of course wanted to follow the schools advice and guidance and we went through the whole referral process. We didn't even get to assessment because the CAMHS folk observed her in class and then individually and concluded there was absolutely no neurodivergence.

I posted on Mumsnet about the issue early on and everyone told me school would be right. But they weren't.

I am grateful for any care and support from professionals and tend to respect those with more experience than me but on this I knew they had got it wrong. No harm done other than a stressful experience for me though.

Please listen to the nursery. I can tell by your use of “label” that you’re quite uninformed about the realities of how autism can present. And that’s not a criticism - the majority of people don’t understand the slightest thing about autism until they find themselves raising an autistic child.

So please don’t get your hackles up about what I’ve just said 😊

Ive walked in your shoes. I’ve acknowledged that my son had delays, but equally I twisted myself into knots looking for all the ways in which he didn’t meet the criteria - or the criteria as I understood them, which isn’t quite the same thing.

Autism can be subtle. Autistic kids can give eye contact, on their own terms. Autistic kids can be loving and social. Autistic kids can be speech delayed but then make huge progress.

I too had professionals (speech therapists, preschool staff) telling me that they didn’t think my son was autistic. And of course I clung onto that.

When you have a child who doesn’t have a bunch of big “red flag” traits waving around everywhere they go, it can be so easy to convince yourself it’s nothing. But many, many children don’t present with a few big red flags… instead they have loads of small pink ones 😉 And I see a lot of them in your OP.

That’s a rubbish analogy but hopefully you get what I mean. Please just keep an open mind and don’t refuse offers of help/paed referrals. Sometimes autistic traits get more obvious as they get closer to age 4-5, when the gap between them and their peers is a little more obvious. Also bear in mind that premature birth is a known risk factor for autism and ADHD.

I would push for a referral. Nursery will have more idea over a HV and like another poster said, they don't refer lightly.

In terms of the point "he's different at home" a lot of ND children have home as their safe space so will be different, more relaxed (or alternatively, particularly in older girls, meltdown after masking) in the home. They can cope with different things in the home than they can in a nursery (and school) setting.

You, the HV nor nursery are experts in this field. Get the referral (and wait times are long) and see.

@greroses I relate to your experience.

It's really really stressful when you feel there's a determination to diagnose your child and a closing off to any evidence that contradicts that. I have never in my life questioned someone in authority but nursery and school staff are not infallible and there is a well known phenomenon of confirmation bias.

Still, no harm in getting expert advice I guess.

YABVVVU.

Listen to the nursery, they know better than the HV.

Keep an open mind and accept all referrals, assessments and support that is offered.

The sooner you accept the possibility that your son might be neurodiverse in some way, the better.

And ignore the PP who advised changing nursery, how utterly ridiculous and potentially damaging for a child like this to be moved for no reason.

Oh and unless you have any qualifications in child development or child psychology, you don't know what is normal or not.

"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"

Nope not normal

Hi OP I'm going to be honest and say I was highly offended and upset when my sons childcare workers mentioned to me that he was having issues but they were spot on.I absolutely wouldn't panic but I'd definitely press for an assessment. When we had our initial appointment with slt and OT they didn't think he had asd either but it wasn't until he started school when the issues became really apparent.

Oh and SLTs and OTs cannot diagnose ASD by themselves, there is a reason the assessment is multidisciplinary and looks at different aspects and evidence.