Would you speak to the Health Visitor about this, or am I overthinking it?

[NotAnotherBanana]

I’m going back and forth over whether this is actually worth speaking to our Health Visitor about, or whether it’s all still within the broad range of normal toddler behaviour.

DD is nearly 2.5 and there are a few things that have made me wonder whether she finds regulation a bit harder than average:

• She has fairly intense meltdown-like episodes where the full-on screaming/hysterical crying itself usually lasts around 20 minutes, sometimes closer to 30. I’m not including the recovery period in that. During that time she becomes completely unreachable — she can’t tolerate being touched or talked to, eye contact can make things worse, and also even me moving even slightly escalates her. She often has to come out of it entirely in her own time, and if we revisit the trigger too soon she can go straight back into it.

• Her gross motor development has always been on the slower side. She rolled at around 7–8 months, rolled back at around 10 months, crawled forwards just after 12 months and walked just after 18 months. At nearly 2.5 she still can’t jump. On stairs she needs me to hold one hand while she holds the handrail with the other, and she can’t alternate feet yet — she goes up and down one step at a time, bringing both feet onto each step. Her fine motor skills seem good.

• Sleep/regulation has also always been a bit unusual. As a baby she was extremely difficult to settle and woke very easily and frequently. She also had reflux and spent a lot of time crying and arching her back, so I’m aware some of her early unsettled behaviour may well have been due to discomfort.

• Until she stopped regularly napping at home at around age two, she very often had to cry intensely for around 20 minutes before falling asleep for a daytime nap. This was full-on crying rather than mild protesting, and attempts to comfort or intervene usually made her more distressed rather than helping her settle.

• She has also had periods of severe dysregulation on waking from naps. At around 1–1.5 years old, there was a phase lasting several weeks (possibly up to a couple of months) where she would sometimes wake from a nap in what felt like a full meltdown and be completely unreachable. During those episodes I often couldn’t touch her for around 30 minutes without making things worse and just had to sit next to her and wait.

• More recently, she has still occasionally had similar episodes after daytime sleep. She also tends to become hyper rather than sleepy when overtired — running around, climbing on me, getting more and more wound up — and can then either crash into a meltdown or suddenly fall asleep. Massage sometimes helps if I catch the overtiredness early enough, but it’s very hit and miss.

Her speech and fine motor skills are good, she settled incredibly quickly at nursery and they haven’t raised any concerns. She follows instructions well there, including in her less familiar language. She still naps for around 1–1.5 hours at nursery, even though she generally refuses naps at home.

She’s our first and only child, so I don’t really have anything to compare it with, and I keep wondering whether I’m just overthinking a collection of normal toddler traits.

Has anyone spoken to their Health Visitor about a similar mix of things at this age? Were they helpful, did they just reassure you, or did they suggest any further review/referral?

I’m not really looking for a diagnosis at 2.5 — I’d just like to know whether this is the sort of thing you’d mention to a HV or whether you’d simply keep an eye on it for now.

Thank you so much — this is incredibly helpful, especially hearing both your professional and personal perspective.
At nursery she actually seems to do really well. She settled very quickly, joins in, follows instructions well even though it’s her second language, and they’ve never raised any concerns with us. As far as I know she plays alongside the other children and takes part in activities normally, although I might ask them specifically about things like carpet time, role play and transitions just to get a clearer picture.
It’s also really reassuring to hear that your own DD had similar episodes and largely grew out of them. I think I’ll contact the HV after all and just ask for an overall developmental review. A watch-and-wait approach with some practical support sounds like exactly what I’m looking for.
Thank you again — your reply has honestly made me feel much more comfortable about getting in touch.

Some of this resonates with my for my DD who has diagnosed Autism and possibly ADHD too.

I remember getting ready for her waking from a nap by putting the TV on and getting a snack ready to ease the transition.

Her meltdowns were epic and nothing you could do.

She started 'tantrumming' from 11mo but behaviourally struggled at nursery childminder more than it sounds like for you. Struggling with going along with what everyone wanted to do and coping with lots of children.

You're very welcome

I just hope your hv team is supportive when you get in touch. Services differ across the UK including what is commissioned and offered, hopefully your HV will be one of the better ones 🙂

Never any harm in getting help and support from the HV team. I have had good experiences.

Our of 3 dc, 2 of mine have had spectacular meltdowns that lasted for ages and left them drained, spent and completely dazed. I could not really do anything to divert the meltdown when it started and had to wait for it to be over basically. One of them was still doing it at 6ish but neither of them have continued as they have grown up. Both are neurotypical and thriving.

I would be reassured by nursery being reassuring. They see a lot of dc of similar ages and stages and have a good feel for normal development.

FWIW, my 1 who didn't really tantrum is the one who is somewhat not NT - not diagnosed but not entirely mainstream in her relating to the world and others.

Your description sounds spookily like my son! The meltdowns, the kind of zoned out/unreachable spells, the difficulty with sleep, the motor skills, but no issues raised by nursery... He's 12 now and neurodivergent. He is autistic, dyspraxic and has ADHD but is generally doing well and is a great kid 😃. I'd say at 2.5 though, you're just not going to know if there's some kind of neurodivergence at play or if this is just her normal development. It's good to have these things in mind, just in case, but I think you probably do need to wait and see how things develop for a while. My instinct is that the HV won't be much help, but maybe I'm biased as mine was definitely not the best 🤣

@PermanentlyExhaustedPigeonZZZ Thank you, that’s really helpful. The early tantrums and difficult nap transitions sound very familiar, although DD definitely seems to cope better at nursery so far

@CarotidFartery That’s interesting to hear, especially that two of your DC had very intense, long meltdowns and both turned out to be NT and are thriving. It really does seem there’s such a huge range at this age!

@TrixieCat Wow, that does sound quite similar to DD, especially the zoned-out/unreachable spells, sleep difficulties and motor side alongside nursery being fine. Thank you for sharing — I think you’re right that at 2.5 we probably just have to keep an open mind and see how things develop.
If you don’t mind me asking, what eventually made it clearer that your DS was neurodivergent? Were there other traits that became more noticeable as he got older, or was it mainly that these same difficulties persisted?

My eldest had epic tantrums much as you describe. She was like a wild beasty, totally out of control and I used to worry she’d hurt herself. She tried to rip the cupboard doors off once. Nothing could distract or calm her, we just had to wait and she would be utterly drained afterwards (as would I!). She is now v laid back, competent and about to start uni. Her sister was a sunny baby, in contrast and is now a very grumpy teen - I am finding this much harder.

Going hyper when tired is very common - my youngest used to spin, dance and whirl in the evening, as does her cousin now. Lots of little ones don’t understand what ‘tired’ is IME, they just feel weird and/or have fomo! Fighting sleep is not unusual, nor is feeling grim in waking. I still feel horrendous when I wake up if I accidentally have a day time nap!

I will admit... It has generally been his teachers. His school teacher actually spoke with us when he'd just turned 6. She was quite a new teacher and had noticed a few things. I can't remember all of it now, but it included his constant need for movement, finding changes hard to manage and struggling with instructions and sequencing things (despite, in her view, him really wanting to get things right). I think it became more apparent when he was with lots of other kids and someone could make a comparison? He was diagnosed as ADHD at the end of the same year.

His class teacher when he was 8 was then the school SENCO and she called me in and asked for permission to make a referral for an autism assessment. By this point, there were some of the more obvious traits as we'd been wondering too. There was a lot of parallel play, lots of lining up and categorising things as a form of play, very little eye contact, sensory sensitivities (sound, smell and the feel of clothing) and he was really struggling with his emotional regulation.

She sounds entirely normal, to be honest. All of my children had stopped napping by 18 months (much to my horror each time), and the gross motor skill don’t sound dramatically late.

The tantrums don’t sound particularly extreme either. However perhaps I’m biased as mega tantrums seem to run in my family for girls. I am told that I was an utter demon until about age 4. I then grew up to be an unusually calm older child and now adult. I’m not neurodivergent or anything like that.

I have a 3 year old girl now. It’s only recently she’s developed the tantrums but my god, they are tantrums for the ages. I didn’t truly understand the way children can become “unreachable” like you say until my daughter came along!

Of course your daughter might well grow up to have some sort of diagnosis. But I don’t think anything you’ve said here is particularly indicative of that.

Yes, us and I really wish I’d made more fuss earlier.

I haven’t read the full thread so if you haven’t spoken to the HV yet I would fill in both of these:

30 month Social & Emotional Ages & Stages

and the 30 month Ages & Stages.

You can either score them yourself or ask your HV to do it for you. Feel free to discuss the results here

It’s being referred to in this discussion as a diagnosis. It’s an incredibly wishy washy undefined term, and as I say, is being used as a label rather than the political intention, and also specifically for Asperger’s.

We could replace every single “neurodivergent” word in this conversation with the word “disabled.” Or Disorder. Does my child have a disorder. At 2.5, with the associated descriptions of how she’s doing at nursery, it’s clearly far too early to say such a thing.

Neurodivergent also includes bi polar, schizophrenia etc. There are links between schizophrenia and autism too, the term autism came from reasearch into schizophrenia and 10% of children diagnosed go onto develop it / be re diagnosed as adults.

I do have an issue with parents of under 3s wondering their child is disabled when nursery isn’t realising any concerns yet.

I don’t have an issue with parents asking if they should raise these extreme tantrums with the HV and ask for support with them. And double checking gross motor issues. the HV who’s posted on this thread makes good suggestions so I now do think it’s worth seeing HV and double checking things with nursery.

I never found my HV helpful but I’m a teacher and also teach children aged 10 / 11 who still behave in the way the OP describes which is certainly outwith “normal” and a significant issue for the child, their parents and all their social connections, as well as learning. I have remembered that a friend with a son who behaved like this, well into reception, found the HV very helpful. His tantrums were epic. I remember her dealing with one in the street on the way to school. He’s actually great now. Her other child has been diagnosed with autism, but fits the old Asperger’s profile. But didn’t behave like that.

What the OP means is, was your child diagnosed with anything. Unfortunately none of us have a crystal ball. It’s pertinent to note that adhd and sometimes (now, since the changes to diagnostic criteria) autism diagnosis are not “firm” or fixed when diagnosed in childhood. Especially if a lot of support is given. ADHD in particular was always something most children grow out of, especially with supportive interventions - so are we really referring to a child who’s taking longer than others to mature?

The issue with diagnosis - for over 20 years in my experience - is that we wait for that before any support is given. It makes more sense to say “we’ve noticed these challenges, what helps?” And provide that support. Sometimes then, a diagnosis isn’t needed. The issue is that schools haven’t been doing that. Because the government hadn’t made it a priority.

Not all children like to be diagnosed. I know of some older teens who’ve had issues and now have the diagnosis and hate it. “De diagnosis” is now a thing in some countries. Another teen whose school raised the possibility but his Gp dad didn’t go down that route for specific reasons (he’s exceptionally clever and his sibling does have autism and LD). I know of teachers who aren’t seeking diagnosis of adhd for their son, partly as the gp told them that everyone referred gets the diagnosis, and they know their son is bright enough to learn to regulate better.

A diagnosis can also be limiting for the individual due to the social idea that it’s fixed or the nocebo effect - “I can’t do this because I have xyz.” They’re not really “diagnosing” dyslexia now in many cases as we now know how to provide intensive support for children to support that specific learning difficulty.

In SEND, the diagnosis is often irrelevant as we make the environment suit the child’s needs.

I’ve known for a long time that the school system is creating a false idea of normal. It’s got much worse in the last decade and is driving some of these later diagnoses. It’s is very much sounding like schools will be being asked to provide enough support that a child doesn’t need a label of “disorder”

there’s also the issue of, what happens if the child DOESNT get the diagnosis? They still have the same issues. What happens then? You provide support for those issues. So what was the point of diagnosis?

Sorry for the length of this post and my strong feelings but I have worked in schools for 25 years, 20 in SEND and seen a significant drop in actual support for children and their needs, with a growing chasing of labels. Which lead to nothing. Good child psychology has always said that we should label children. For very good reason. The evidence is beginning to build that it is much better just to define needs and challenges and provide support.

So yes op, do see the HV but simply ask for any assistance with the tantrums and the gross motor skills - though you already seemed to have worked out that perhaps more opportunities for physical play she enjoys would help.

My main point is that cognitive/ psychiatric diagnosis are subjective and opinion based, not testable fact as blood tests are. It’s observed behaviour- if the behaviour doesn’t resolve with maturation and intervention, it’s appropriate to gain diagnosis, but mainly as the child will a more tailored educational setting. And then, if severely affected to the point of lack of independence and ability to access work, life long tailored support.

Judy Singer who created the term, isn’t keen on how it’s used now either. Her opinion is that it’s been twisted.

https://www.psychologytoday.com/gb/blog/inspectrum/202306/an-interview-with-neurodiversity-originator-judy-singer

“The problem? Neurodiversity has morphed into what Singer calls a “Pollyanna/Pangloss” ideology that bears little resemblance to the movement she launched more than a quarter-century ago. Afraid to say anything for years because of the aggressive trolling critics typically receive on social media, Singer finally decided that she needs to speak out. “I could put it [neurodiversity] out there, but I couldn’t control it,” she told me in a recent interview.”

I don’t think you’re quite right there. One of mine has a micro deletion which is associated with ADHD and ASD. The geneticist confirmed the ADHD diagnosis from their blood work.

My DD was still having tantrums at 7. She then suddenly snapped out of it and is now a delightful adult.

Another DC did the post-sleep tantrum. Also now a (slightly grumpier and possibly ND) delightful adult.

I don’t think you’ll get much help from the HV but it’s worth a try. You seem like a lovely mum, and that’s the most important thing for your DD.

You sound like my parents. Both worked in SEN for years too apart from my mum who struggled to hold a job down after about 45. She doesn't have any diagnosis but it would not surprise me if she were to (other than the fact that she'd sought one).

Her stance on having my daughter assessed changed from 'people don't need labels' when I asked her what it would have felt like to know that a disability had prevented her from working after about 45 rather than just being crap, or if she could have called herself neurodivergent rather than a failure.

The difference between neurodivergent and disorder is so clear to me from the standpoint of being the person experiencing either that it really surprises me you can't see why people use it, especially when they don't want to be specific about the condition because they don't want to diagnose someone else online or they don't want to share the specifics of their neurodevelopemtal disorder.

Of course the support needed is the main thing and when the education system treats every child as an individual maybe the labels will become unnecessary. But as you know better than most I'm sure, it currently can't and doesn't. You fit in or you don't. Knowing why is useful if you don't.

Context matters; this is the context of a 2.5 yr old. Sensory processing, physical and communication skills are all rapidly developing.

3 part series here exploring exactly what I’m describing. Apparently half of those who’ve been diagnosed with autism agree and half don’t. (Of those who can communicate.)

https://www.bbc.co.uk/sounds/play/m0030m4t?partner=uk.co.bbc&origin=share-mobile

My issue was with the term
neurodivergent, which, according to that programme also includes stroke patients.

fwiw, the children who are aged 10 who do as the Op describes get lots of playful opportunities to work on their jumping via various interventions or sessions and we sometimes just have to sit patiently with them, making sure they’re safe, whilst they cry for a very long time (though rare, I’ve known most of the day before now) when nothing else works.

The label matters because that’s how the welfare system works, currently.

Thanks so much for suggesting the ASQ questionnaires — I’m really glad I did them.

I was expecting gross motor to be the main area that came up, but I was actually a bit surprised that it wasn’t just that. On the ASQ-3, gross motor was clearly low, but problem solving and personal-social also came out below the cut-offs, although I think a couple of the questions could probably be scored slightly differently on a second look.

The ASQ:SE-2 also came out in the monitoring range rather than over the cut-off. So neither questionnaire is screaming anything definite, but both seem to suggest there are a few things worth keeping an eye on.

It’s definitely made me feel more comfortable about mentioning everything to the HV rather than wondering whether I’m just overthinking it. Thank you again for pointing me towards them.

Yes, there’s some research into autism and genetic issues but not enough however. And not enough to be able to apply a test as you describe to all. You can have a child who’s suffered a brain injury at birth or been born extremely premature have the same observed behavioural and communication symptoms that are described as autism.

Anyway, I don’t engage in this topic when it reaches a certain slant, I’m more interested in solutions, so leaving the thread.

Thanks so much for explaining that — that’s really helpful. It sounds like things became much clearer once he was older and in a setting where teachers could compare him with lots of other children, and there were quite a few more obvious traits by then.

That’s really useful context for me, as it sounds like at 2.5 there may simply not be enough of a wider picture yet to know either way. I’ll definitely keep an open mind and keep checking in with nursery and later school as she gets older.

Thank you again for taking the time to explain how it unfolded for your DS.

My ds was diagnosed at 3 with asd. The only similarity to your list was sleep was terrible and the meltdowns. He was very delayed with speech and poor fine motor skills but advanced in rolling/walking etc although he couldn’t jump either!
He did the lining things up, head shaking, spinning and walking on tip toes. I contacted hv at 2 years and she came and did his two year review ( if she hasnt had it she is due) agreed there was some signs and referred him to speech and language who also agreed so they jointly referred to paediatrician who put him on the pathway .
i would ask hv to visit write down your concerns so you don’t forget anything. You could also ask senco at nursery to observe her.

There’s a on line questionnaire called toddler mchatr that’s recognised as a good indication for concerns

@likeitshard Thanks, that’s really helpful — I appreciate you sharing your experience.
DD has already had her two-year review, but I think I’ll still contact the HV again and ask if they can look at the overall picture now.

I wouldn't rule out a food allergy. It can cause low level discomfort which can come out as poor sleep, distress when waking, tantrums etc.

That’s an interesting thought, thank you. She does actually struggle with constipation and has had a few really extreme crying/meltdown episodes because of that in the past — we’ve even had to call 111 a few times. Those episodes tend to be fairly obvious though, and she’s on Movicol now, so I don’t think constipation explains all of the other meltdowns, although I’m sure discomfort can sometimes lower her tolerance generally.

I hadn’t really considered food allergies recently. We did wonder about cow’s milk allergy when she was a very refluxy baby who cried and arched her back a lot, but it didn’t seem to be the explanation at the time.

I think this is probably another reason I should just speak to the HV and go through the overall picture rather than trying to work out each bit separately myself. Thanks for mentioning it.

Constipation is a classic cmpa sign as they get older. A lot of people think they've grown out of the allergy because they stop with the runny poo or rashes but don't realise it can evolve into constipation. The problem is the only way to test for it is to cut out dairy for a month or so and see if it improves. A non-ige allergy won't show up on the allergy blood tests.