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?

This is going to be a complete condradiction, but go with me on this.
Definately push to get on the ASD pathway as soon as you can, because it's a long old wait!! But at the same time, just get on with yours and your little ones life and try not to let it bother you too much if he is happy!!
My little boy is now 5 and as early as 18m his childminder picked up traits, when he started pre-school they also noticed it and were fatastic at helping to get the ball rolling for a paediatric referral. Almost 3 years later we have managed to have a couple of blocks of speech therapy and one visit to the paediatrician - nowhere closer to any formal diagnosis BUT my son is HAPPY and doing well at Primary School (with an EHCP in place which was greatly organised by the Pre-school, so disscuss this with the nursery early too, as again this is another long process) and to me that is all that matters. Yes he may get some diagnosis in the future and if extra help is offered to me, i'll take it appreciatively with both hands, however for now i'll just take each stage of his development as it comes.
So anyway the moral of my story is, as many have said, try to take the nurseries concerns gracefully, as they will have been in the company of more children with a whole range of "traits" in the past, they aren't trying to say they know him better than you do, they're just trying to raise that little flag so that you can make an informed decision, at the end of the day if you get to the "front of the queue" when any kind of diagnosis may be required and you think it is no longer needed, then no harm done, just say thank you but the service is no longer required - better to be on the waiting list and not need it than later down the line wish you had got on it sooner!
Hope that helps and stay strong Mumma - we're all just doing the best we can and at the end of the day, all the little one needs is to know he's loved x

I would say definitely make an appointment with a GP to get some further advice and possibly a referral.

Do you know how long the wait is for SALT in your area? I waited 11 months for a 1 hour appt and it was rubbish. I would highly recommend seeking a private speech therapist if you can afford one.

Also give ICAN a call. They are a charity who can give free advice on speech and langauge. I found them very good. https://www.icancharity.org.uk/

My DS is on the pathway to being diagnosed as ASD. I would listen to the nursery, children struggle more outside the home and any delays/differences will be more pronounced. My nursery regularly tell me things they see in my DS which I never see at home. At 2 my DS didn't seem to have many signs but at 3 they became far more obvious. His speech at 4 is now good, he responds to his name, uses gestures etc but I'm 99% sure he is Autistic. Feeling the way you are is really normal, my advise is to accept all the support/referrals as the process is so long. Start looking at ASD in a more positive way, stop looking at anything which uses negative language like 'red flags'. Focus on supporting your DS in the areas he struggles in for now and work with the nursery.

This

I like your small pink flag analogy 🙂

Don’t worry, I’m accepting all and every bit of help that is being offered. I’m keen for as many professionals to see him as early as possible so that support can be put in place ready for school. Heading to my first portage play group session tomorrow so it’ll be interesting to see what they say.

If he is speech delayed have you had a hearing test? The toe walking could by hypermobility ds 2 is hypermobile in his hips he turns his feet in and toe walks because that is a comfortable position for him to be in I waited years to see an occupational therapist for them to tell me its fine unless he trips a lot

Not really, it depends on the situation but nurseries, nor their staff are always right for a family. If this family has another 2 years before school then it might be the right thing to do. I wasn't saying the OP should, I was just saying I wish I had, instead of a miserable year in a stressful environment (the main reason that my son didn't settle) Nurseries and nursery staff can be amazing, but they can also be terrible. They're not varied settings, so if that environment isn't right then it's hard for some kids. They can be noisy and overwhelming. I find it amazing when people say 'nursery know more than a HV/see more child than a HV' etc. Not always! Plus "the majority of people don’t understand the slightest thing about autism until they find themselves raising an autistic child." that someone else mentioned, that's not true either. Many people spend time with autistic toddlers/children/adults and might have decent awareness.

Ah this is so tough OP
I’ll start by saying my 3.5yo DS is Autistic and the process of realising, accepting and documenting this was tough.

Firstly, it doesn’t matter if they do ALL of the things associated with autism it only matters that they do a few of them regularly. So for example, My son is non verbal and stims… but has great eye contact and eats a varied diet. He’s sociable and shares space with other kids. He’s just learning to copy. He’s still autistic though.

I remember reading the list of ‘ASD signs’ when he was about 20 months and feeling relieved because he only did about 40-50% of that list. The paediatrican later told me ‘a neurotypical child would do none of those things regularly’ of course there is always a bit of lee way in that a child may go through a walking on tip toes stage, or a fussy eating stage without it being a big deal… but they don’t do multiple things from the list regularly.

They also develop as they grow. So back at 2 my DS didn’t respond to his name, speak or socialise but from 3 onwards he has. He’s also just started saying words. I think if I really wanted to not see it I could have tried to brush it off ‘he’s a late bloomer’, ‘he’s a slow learner’ …etc but Ultimately it is autism and even though DS has come on leaps and bounds the gap between him and his peers has just kept growing.

I think you should pursue it if nursery are that adamant. I promise you no paediatrican will diagnose autism without being sure. It’s actually really hard to get an autism diagnosis for a young child there’s a lot of push back. So if they do diagnose him I guarantee you they’ll be sure and at that point I’d suggest just trying to work on accepting it and getting your DS the help and support he needs. A lot of ASD kids go on to live perfectly regular lives if supported correctly. If not supported though they run the risk of always being labelled ‘slow’ or ‘difficult’ and being totally misunderstood.

Of course there’s always a chance everything is perfectly fine. Time is the best detective, it will become clearer as he grows but waiting lists are so long that he’ll probably be 3-4 before he’s even seen and if you don’t need the apt by then just turn it down… you have nothing to lose x

All nurseries are different but in ours we have a sen person if we the staff have any concerns we speak to her, she will then observe the child over a few weeks before even speaking to a parent after observation for a few weeks see will speak to parent if she thinks she needs to. I would atleast get the ball rolling for assessment as they take ages anyways.

Agree with PP that I would listen to the nursery - they would have literally dealt with hundreds, if not thousands of kids the same age so know very well what is neurotypical and what is not.
Also just think to yourself what reason would they have to exaggerate or be melodramatic about his behaviour, therefore worrying you unnecessarily? What would they gain from that? Sounds like they are doing their job and informing you of things they’ve noticed, rightly so.

I had the opposite experience in a way. I had a lot of experience with asd and I had very early concerns about ds. But I was also clinging to every well meaning, or ignorant reassurance that everything was ok.

One of the things I didn’t realise was that professionals (ten years ago) couldn’t diagnose at the age of two and phrases like “wait and see” meant just that. And I was getting pegged as an anxious mum.

I felt quite angry when they were telling me at 3 that they could now assess him properly, and eventually that he did have asd. I felt like I’d lost a year in his prime window of development

You mention that nursery seem to be talking about a different child.
It may be that your DS presents very differently at nursery to at home.
Nursery can be a more challenging environment that home. More noises, smells, people, more/different expectations.
My own DS seems very "normal" (for want to a better world) at home but displays "autistic" behaviours at school. (Sensory seeking, zoning out, occasional distress)
School is more stressful and he needs to utilise different behaviours to regulate.
I'd ask for a referral at the 2 year health check. The process can take a long time but is pretty unintrusive. Your DS will remember having a couple of chats with a doctor.
If it's nothing then no harm done. If it turns out to be ASD you will benefit from having the diagnosis earlier rather than later.

Saying that they’re pushing to label your son makes it sound like you think they have some kind of agenda. Really they’re just noticing things that could point to ASD and as they have so much experience of babies and toddlers they are going to notice subtle signs better than those who don’t have the same level of experience. To me it shows that they are attentive and thoughtful (even if he turns out not to be autistic after all).
My dd was diagnosed at 11 but looking back there were subtle signs from birth, there was just nobody to see them. (I saw them but just saw her as being quirky / high needs, and she didn’t go to a nursery much). It would’ve been a good thing for us if other people had seen those signs earlier. I think the nursery is only trying to help, let them have their say and you’ll find out in due course whether he is actually autistic or not.

@Dumbledormer Your child sounds completely normal to me. I had a similar experience with my DS, he was referred for speech therapy and statemented as special education needs. He was also diagnosed with several other suspected issues (including autism) between the ages of 2 and 5. I remember one of his conditions was diagnosed based on the fact he liked hugging too much, didn’t play with other toddlers etc etc.

He is 20 now and in Japan doing his degree.

There are a lot of poorly educated people working in nurseries talking bollocks.

My best advice is, sure investigate things, no real harm in that but please don’t worry too much.

I think for a nursery to be picking it up I'd take it seriously. They are frequently dismissive of parents concerns over ASD. I've got autistic kids and HV are a waste of space. Absolutely adamant my child's behaviour was 'normal' 'stop worrying' etc well now he's out of school and has alternative provisions where he has 2:1 support he has significant needs and support was held up by HV and nursery dismissing my concerns.

Having an autistic child in setting means more work for nursery. They won't bring that work in themselves unless they are sure the child needs it.

I think everyone agrees that any flags should be investigated and any help and expert advice gratefully received.

Before my experience with DD I would have wholeheartedly agreed that if nursery or school flag issues then there are issues but as I say in my experience they got it wrong even though they were adamant.

And as for those saying what is in it for the SENCO to push for diagnosis well there is a lot in it for them - showing their SLT how diligent and on the ball they are, showing Ofsted their excellent approach to inclusion etc etc.

I used to work with a HV team and on one occasion was asked by a Nursery Manager to visit the home of a 2.5 year old boy who they suspected to have autistic traits.

The purpose of my visit was to meet the parents, discuss any concerns they had and do some observations of the child in his normal and familiar environment.

During my time there the child acted and behaved in a way that I considered to be completely typical behaviour for a child that age and nothing stood out as being off, or worrying. I left the house quite perplexed as to why the nursery had raised concerns.

However, about a week later I went in to his nursery setting to observe him in that environment and it was like I was watching a completely different child. He was fixated on certain objects or jobs and would be oblivious to other activities, he wouldn’t play or interact with the other children, he wouldn’t look at or engage with staff, he was always playing on his own and wanting to remove himself from the other children (hiding in corners for example) and I noticed he was constantly putting toys in his mouth and licking them. I spent about an hour with him and could completely understand why the nursery staff had raised concerns.

Like I said, it was like I was observing a completely different child to the one I had observed in his home and when with his family.

He was referred to Portage for further assessment and he was diagnosed.

As many other posters have said, you only have experience of your child whereas the nursery staff have no doubt worked with 100’s of children so they will easily be able to tell when something just doesn’t seem right with one. They will especially recognise atypical behaviours in relation to you son when it comes to how young children communicate with and interact with other children in large numbers which again is something you perhaps won’t have been exposed to if you haven’t spent time observing him yourself in the nursery setting.

I would take on board their concerns and work with the staff rather than try and push their concerns aside.

If there are concerns that are justified then the earlier they are recognised and managed then the far better outcome for your son.

I think for a nursery to be picking it up I'd take it seriously. They are frequently dismissive of parents concerns over ASD

I agree with this - my eldest is autistic and his nursery had some concerns early on but didn't say anything. We were first time parents and hadn't really been around other kids the same age so weren't aware quite how differently he was developing from his peers. Given the 3 year waiting list for an ASD assessment in our area, I really wish they hadn't sat on it for so long.

HVs have massive caseloads and unfortunately sometimes go for the 'wait and see' approach under pressure to keep waiting lists down.

OP, if it turns out to be nothing, by the time you get to the top of waiting lists your DC will have caught up with peers and no harm done.

Similar story to yours. DS was speech delayed and showed other traits that were picked up as possibly ND by nursery but had been missed by us - or rather we had not entertained the idea because he didn't fit the classic description. He was formally diagnosed at the age of 7 with ASD. The advice we were given was to wait and see. Too hard to tell sometimes in the early years - could be autism, could be speech & language disorder, difficult to tell when they are so young. DS also hit many developmental milestones - language developed at roughly the right age but still using single words at the age of 3.5 years. Responded to his name, made eye contact, engaged in reciprocal play with his sister and us etc etc. I'm glad we waited, and I'm glad we went for formal diagnosis when the time was right.

Honestly, all of us probably go through a massive stage of denial. I know I did. Because I didnt see it. I watched all the videos on tiktok etc of 'Signs my DC were autistic', and none applied to DD. She didnt stim, thrived on routine changes, affectionate with great eye contact. She did have speech delay, and the SALT was the first person who asked if I had considered it. They even said that you would never pick DD out in a room as being ND.

But she is. And nothing actually changes with that, only now I know her brain just works a bit differently, and that then means I know I have to advocate for her to get her the right support. As she has got older, she too has come on leaps and bounds with her development and speech, but other ASD symptoms came with it. I feel like they go hand in hand.

Thank you for taking my post in the spirit it was intended. And I’m glad my analogy made sense!

Just remember that no child will be misdiagnosed with autism. It’s far more likely for kids to slip through the net and not be diagnosed. Keep learning what you can (I threw myself into all sorts of things: Instagram accounts, podcasts, you name it. It really helped me to throw off all the misconceptions I had) because some of it may start to resonate.

And above all else, just get on with your life as you navigate your way through all this.

TBF my ds just got mostly 9's in his GCSE's and is predicted all A*'s in his A-levels and will be going to uni next year - but he's still autistic. He wasn't diagnosed till just before secondary school OP and this is when it tends to become much more obvious. Before that I had no idea and it was never suggested to me by anyone - until his teacher went on a course and just had an inkling.

Two is very young either way and unless it was very severe I think they'd be reluctant to diagnose at this age - but it might be worth starting the process just because it is likely to take a very long time to get anywhere.

I would take all the referrals offered and see.
My DD has Aspergers it was diagnosed when she was 6. I had previously had concerns and dismissed them as not being "enough " to get a Dx .
As she got older the differences became more apparent.
Having said this she is very intelligent and has a masters in computer science and is living independently with a well paid programming job and a good social life with understanding friends and partner.
I feel that the diagnosis and subsequent help received enabled her to manage so well.

Hi OP. Nursery incorrectly labelled one of my kids. But they could have been right. I guess what I’m saying is keep an open mind. No harm will come from investigating further.

Thank you, this is really interesting and useful to read. One of the reasons the HV dismissed what I told her about nursery’s concerns is that 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.