Parents to ND children - how were you able to distinguish between ‘normal’ toddler behaviour and ND traits?

[user0512]

Hi,

My DD is 2.5 years old and I’m really struggling atm. Initially I didn’t want to jump in and say I think she’s ND because she was too young when I noticed behaviours but with time it’s become more and more apparent.

As a baby she was mostly late with social and communication milestones (waving, clapping, pointing etc). She pointed extremely late and I’d be frantically researching about it because it can be an early sign of ND.

She struggled with pretend play at first and then was able to engage in it with her dolls but I’ve now noticed that she has regressed and no longer engages in a ‘NT’ way with her toys. She needs a lot of reassurance, and wants to always be by my side. She uses her hair or mine for sensory feedback and she also still constantly puts things in her mouth. Even at nursery she prefers to stand with the adults. She does sometimes play with her peers but again, this isn’t that often, she struggled with transitions at home and nursery and needs to have pre-warning and plenty of reassurance and even then we have melt downs.

She does make eye contact and is quite talkative and I think for this reason the HV isn’t concerned but I’m just trying to work out how to work out if it’s just a toddler stage or it’s early signs of ND.

For context, her dad is ND, my sister is, my nephew might be and other people in both our families are.

I’m not expecting her to be perfect, I know she’s a toddler and toddlers do test boundaries but it feels constant with her. Even a day out if just her constantly wanting to be carried by me and crying constantly, even going to the supermarket this is the case. I expect the tantrums when she doesn’t want to leave the park or if she can’t have cake for breakfast but when we went to CBeebies land a few days ago I noticed that other children her age were a bit more regulated whereas she was constantly in met down mode the whole time.

Sorry, I’ve posted on this board for more traffic.

Whereabouts are you op? The pathways to access help may vary in different jurisdictions . It can be possible in some places to access help, without or before a formal diagnosis.

Something you could look at in the meantime in terms of nd parenting is-
Predictable routines can be very soothing to dc who struggle with transitions. Clearly signalling transitions through something like a visual schedule can help communicate the steps and provide reassurance.

Having consistent transition signals are helpful too, and for some dc, giving them information on when they can have the activity again can help mitigate the distress of ending something. It’s hard to imagine, but if the brain hasn’t developed the ability to predict time, it may not be at all obvious to them that they will get to watch tv again after dinner, or visit the playground tomorrow.

But you also don’t want to get locked into 1000-step rituals so try and read up on strategies like this before you launch in.

I found the books “the out of sync child” and “sensational kids” great and I recommend looking for them in your local library which will have a shelf load of other great books, and may also be able to lend out equipment. Libraries are fantastic resources worth checking out

It is very hard to tell in a young child (unless there is a lot going on with comorbidities) because a lot of traits are shown by most toddlers at some point and things like delayed development get far more obvious once everyone else has moved on further and one child hasn't.
It is also very hard for the parents in particular to tell because of the strong hereditary component - ND kids tend to be developing exactly as expected when the benchmark for comparison is their parents, uncles/aunts and cousins as children.

My child was a classic gestalt language processor, I didn't know that's what it was called at the time but could tell he was a little unique guy.

I am a teacher, and I have a masters in SEND and my son was in year 2 before I realised.

Now this isn’t to say there weren’t ’traits or signs’ there were but easily explainable.

1. He missed key milestones, by months. All fine motor skills, but he did hit his verbal milestones. We just thought he was a late bloomer. He was happy and healthy and we assumed he’d catch up (he did)

2. He didn’t talk to new people, nursery raised this as a concern when he was 3, but he was talking in full sentences at home and around family - we thought he was shy.

3. He didn’t do imaginative play. He used to make ‘traffic jams’ and ‘learn things’. So we bought him lots of dinosaurs and he learnt their names, and different facts. I didn’t recognise this as an issue as he also would sing to music and play football, but when I had my second and third son, and saw how they played it was a massive difference.

4. He gave eye contact. But it actually transpired he didn’t give this to everyone. Only people he was comfortable with. I didn’t recognise this as obviously - I got eye contact.

5. He does have intense ‘likes’ but this was never limited to one thing, and was often age appropriate. So it was easy to blend with his peers. As he’s gotten older and his intense like is ww2 and flags, it’s easier to spot.

it was actually his meltdowns which eventually opened our eyes. In that, we always assumed his meltdowns (upon reflection heavily linked to things like routine change, or sensory issues) were normal and he’d grow out of them. When his younger brother had grown out of them by age four, and my oldest was still having them at 7, I realised something wasn’t quite aligning. When we took him to be assessed, we realised we’d missed loads of things, such as stimming (he isn’t obvious with this and it often looked like normal excitement) l, sensory needs (he didn’t like labels on his clothes and chewed his sleeves - I did this too though). He was diagnosed quite rapidly with ASD.

@Tunnocks34 interesting… you’re right, it’s easy for a lot of their behaviours to be characterised as typical toddler behaviours.

I feel like with my daughter I’ve always known something is a bit different. She cried a lotttt as a baby. Initially I put this down to her CMPA allergy but once she was on the right milk and she still cried a lot I started to realise that there’s more going on here.

Late with most milestones. Late to respond to her name, wave, clap and point. Doesn’t like the sun, covers her face and hides when she’s in the pram and the sun’s out. Going out with her anywhere is very hard and always has been. Even before the toddler age, she’d just cry all throughout. This impacted my marriage with her dad a lot because we’d never be able to go for a normal family day out. She’d scream the place down and we’d have to come home.

She repeats words a lot too, often repeating what I say and I’m not sure she fully always understands.

Puts her hat in front of her eyes to sleep and asks for my hair and also gets the ends of her hair and soothes herself with them.

Doesn’t naturally engage in pretend play. She likes to have bubbles blown at her or just empties the whole toy box and just looks at everything one by one for a bit then gets bored of it (although this might be ‘normal’ as their attention spans are short at this age) but it’s the fact she no longer feeds her dolls milk or pretends to put the to sleep. She was late in doing this and has stopped again.

That’s a few things, but the main thing I find very hard is how clingy she is. Needs to constantly see me in front of her face, needs to be sat on me or right near me. That part is hard because I can’t do nothing and sit with her all day. also find it hard that she hates going out. Going to run errands like going to the local Lidls is a nightmare as she screams and cries the whole time - every time without fail. I’ve tried to involve her, tried taking snacks, tried to do it first thing in the morning after breakfast or after her nap and it’s always the same (if anything it gets worse every time we go)

@Ooofbananas thank you and we’re based in Manchester.

I’ve looked into a ’now and next board’ and have put it in my Amazon basket. I think this might help her as she struggles with transitions. Just don’t want her to be too heavily reliant on it like you said has have to put every single thing we do in it. I suppose I can use it for the bigger day to day transitions like sleeps times, going out etc

Will look at this books thank you x

DS never slept, was always difficult with food. Would only ever play with vehicles (I mean even when he was <1) and yes everyone said I was insane when I pointed it out. My local area won’t refer till 5 so I took him to the Lorna Wing and he was diagnosed with classic autism at age 3.5. By that time he’d memorized the entire bloody London Underground map, so there was never any doubt really.

He’s clever but in specialist school from Y1 - cannot cope with kids/noise/mayhem in mainstream.

Be careful with now and next. Works great, but we used it for a holiday with an airline that went bust. We’d used the pictures of the original plane on the N&N board and DS absolutely lost his mind when it was a different plane. The staff were very kind but we were not allowed to fly and the lump of my hair he tore out has never grown back!

It’s difficult. My second son was exactly the same and he is NT.

Henused to scream hysterically when we bathed him. Didn’t sleep for three years,
had to be held in a certain position to breastfeed, wouldn’t tolerate a pram, wouldn’t tolerate a Moses basket, wouldn’t smile back.

he was a miserable baby and toddler. And that was it.