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

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.

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!

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.

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.

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.

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.

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

My son was what we considered just highly intelligent and quirky with his obsessions as a toddler/ young child. He didn’t play with toys and was basically bossed around by his older sister. A gentle soul with many friends,good eye contact and well behaved. As a teenager he was very disorganised,everything left last minute,forgetting instructions etc . I just thought he was lazy. Academically he sailed but then the anxiety kicked in at University. He is now waiting assessment for ADHD..in hindsight he ticked so many boxes for ND but 25 years ago the awareness wasn’t there
Suspect that I have ADHD and husband is definitely autistic but not diagnosed. He has functioned well throughout life but his isms and routines are there in practically everything he does .

We used to joke that DS1 hadn’t read the baby book because he did everything in the wrong order. DS2 was a bit of a shock because he did do milestones as expected. Sleep (complete lack of…DS1 woke every 45 minutes from 4 months to 1 and a bit and didn’t sleep through even vaguely reliably until he was 5) was another clue retrospectively.

First suggested at nursery. By then we were unsurprised. But no diagnosis ‘lots of traits but he’s really clever so he’ll cope’ and it wasn’t until Y5 that things went a bit pear shaped. We went private and had a diagnosis (from a set of professionals who also do NHS referrals) by the end of that year. He’s flying at secondary school…and a bit protected by the self knowledge and the teachers being aware that he will take them completely literally and is not being too clever by half when he does do.

It is difficult to tell at such an early age, and the clinginess could be ‘normal’. My daughter had clear sensory issues with clothes and food, but otherwise played and socialised in similar ways although often was referred to as ‘headstrong’ and ‘knows exactly what she wants and doesn’t want’. It wasn’t until she was year 4 that ADHD came in to the conversation and year 5 that meltdowns and shutdowns became clear she needed more support and space for regulation.

However, I do think that with super clingy children it is important to get their hearing and eyesight tested just in case. Maybe she couldn’t see the end of that sofa, or the crowds are disregulating because of the fishbowl type noise glue ear can create.

If you look at the things you can test for or rule out that might be affect her confidence in public or when you step away from her, that could help.

I think it’s very hard to know at the age you’re describing… I had concerns about my now 8yo at that age, & whilst they could still be ND, I’m not sure at all anymore & am not doing anything beyond seeing how it pans out over time, so I do now understand why they suggest waiting. However parenting as if they are is good advice as it won’t do any harm & many children respond to it.

I didn't. Just assumed DS was rather 'challenging' as was/am I. Not until DS was 6 did his issues become a serious problem in an educational setting did it even occur to me that he was autistic. And a very big thank you to the school's cook for suggesting to me that he might be as the school teaching staff were too entrenched in blaming my 'parenting' as the only explanation.

Many years later after adjusting my entire life and expectations for the both of us, developing the thickest skin, fighting like a banshee, moving several hundred miles (twice) to get the specialist education DS needed to rectify the trauma of being maligned and segregated by mainstream schools it's ok now. He's at uni now with some support.

Thankfully you will come across some very helpful people along the way and it is those that I remember the most rather than the insignificant, ignorant multitude that thought they knew us better than they actually did.

My DS was my first child and he didn’t miss any of his developmental markers. He walked early, talked early, had great eye contact, was a very smart, social child. He was an absolute handful, though - didn’t need much sleep, always on the go, was a real ‘bolter’ and I struggled to keep physical control of him from the minute he could walk.

It was when he started nursery just before his third birthday that I started to think maybe something else was going on. He didn’t seem able to join in play with other children - either hyper and running around snatching toys and spoiling other children’s games, or going off to play alone and refusing to join in with structured activities. Lots of biting and hitting other children, which was difficult. The staff there mentioned autism, but he was so young I just didn’t know what to think really.

He started school nursery the following year and it was a complete disaster. All the issues above became more pronounced and so we started the process of getting an assessment, By the time he was in reception, it was a complete shitshow - he wasn’t cooping at all, being excluded because they couldn’t keep him safe (constantly refusing to join in and running away). He got his autism diagnosis just after his fifth birthday, an EHCP (or statement as it was back then) a couple of months later, and a place in an autism provision in a different school from Year 1.

My second child (DD) is neurotypical, and the differences in their development were stark. I just didn’t pick up on DS’s issues because I didn’t know what I was looking out for then and he didn’t have a stereotypical autism presentation.

Not helpful but I just knew at a gut level. The problem is that no one else could be sure and kept making me doubt myself. Of course it’s all so obvious retrospectively but anything in isolation could be explained away as normal. It wasn’t in isolation though- it was a cluster of symptoms.

We didn’t have the advantage of previous family diagnoses. Ds was “just like [insert family member] at that age” but, now, years on, it’s obvious a lot of those people are also on the spectrum.

It also didn’t help that the professionals couldn’t diagnose as early as I started asking questions, but weren’t making that clear to me. There was a lot of “anxious mother” notes.

We didn't, we were repeatedly told it was normal toddler tantrums etc. I would suggest get curious a out whether sensory strategies might help. Get her a swing and a mini trampoline if you have space, or a rocker or spinny toy, something like that. When she is being difficult try breaking things up with a big sensory input - pick her up and tickle her if she likes that, or bear bug, or roll her up tight in a blanket and squeeze. Fewer words when she is upset, more quiet and big sensory experiences.

See if she gets very upset by changes in routine. I used to give one child or other the choice of which way to walk to school and whenever DC1 picked a less usual way DC2 would get very upset. We just worked through it - DC1 is allowed to choose their preferred way sometimes - but in hindsight it would have been a clue.

I would just encourage whatever play she wants to do. Pretend play isn't morally superior, it's just different. Join her where she is at and get involved in how she wants to play, bolt on skills if you can but if you make pretend play the goal, you might just teach her not to truly explore with her own play but just to "perform" what she thinks you want. She can work on that in nursery with peers. With you try to let her lead.

Sensory issues from birth. Just everything somehow harder with ND child versus sibling, including sleep. Very poor interoception so potty training honestly took years and the typical training advice didn't help. They are still on movicol years later. Proprioception is really bad and can't manage things you would expect a child their age to do (currently age 7 and cannot ride a bike for instance). Enormous emotional outbursts when things don't go their way. Now they are 7 the gap between social understanding is big and noticeable, even to them, but at a younger age wasn't really.
As others have said, the differences are only now at a point where we have been able to make a solid referral for assessment and expecting it to take 2 years or so. It's frustrating that it's taking the best part of a decade to pull together a diagnosis for things I began to notice within days of birth, but equally I wouldn't want her to have been inappropriately diagnosed if there was a chance those things could have improved.

Thx you i have and he does fit the profile! I am trying to parent with this in mind! Every-time I think I have found a parenting solution, he ups the stakes or changes engagement!

@Givemeausernameplswith that need for control, I'd research PDA / demand avoidance.

It was 7 before I had enough "evidence" about DS1 to seek referral. We had a paper trail back to SALT concerns and interventions from age 2, and lots of traits here and there (I gave up the trousers battle by y1) but I wasn't confident that the traits met a diagnostic threshold. It has become more obvious with age as the expectations of social and independence demands change, and there's phases when the gaps open and close.

With DS2, I don't know. He's partway through the assessment pathway, but I don't know if his traits are enough, our lifestyle is ASD-friendly enough around DS1 and I'm just a bit blind to it.

Either way I have a lovely pair of children (as long as they're not together in brother-baiting mode) and they use their strengths well and have enough capacity to function with school and some activities with a cost of a heavy amount of recharge time.

The biggest gift of diagnosis with DS1 is understanding. Knowing what his motivations and limits are and making homelife more comfortable for him. There have been a few times in school that that understanding has been useful too, and it helps with accomodations for things like exams. While things should generally be needs based, diagnosis helps evidence that.

Either way you can adapt life around needs without diagnosis. There's some things that DS1 just doesn't get much out of such as noisy, busy places so we tend to minimise that kind of thing.

Oh and I forgot, all 3 of my autistic kids couldn't cope with jeans

It's tricky . My son was very similar at that age. Late to wave and point, barely made any sounds. He didn't play appropriately with toys. He would just put them behind himself. Turn around and do it again. Didn't do well in the 1 year and 2 year assessments .

He is now 4 and a half. His playing has changed and whilst it is repetitive, it has changed greatly. He does have a speech disorder which has a negative impact on him socially. He does stim. However, we still don't know. Sometimes I think yes, he could be on the spectrum. But then I'll have several days where I really don't know.

He recently saw the pediatrician and she said that she could see autistic traits, however he also doesn't the profile.

He's on the waiting list to be assessed, he'll be around 6 before he's seen again and I think by then it will be easier to see.

My autistic son often put his hands over his ears from a young age, as if the world was too noisy and scary. My autistic daughter used to do her nut when I put a blanket over her as a baby (squirming and crying as if to get it off)
My 2nd autistic son took longer because he was a toddler during lockdown. At school he started showing signs like not interacting with other kids, never toilet training (not due to my laziness, my other 2 were fine in this regard)