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.

Honestly, I didn't. I knew dd2 had more sensory difficulties than the average kid, but I wasn't sure until she was older that it was related to autism.

It's really hard to tell at that age unless it's profound.

This is why a lot of authorities don't refer for assessment until 5 years old.

I suspected DS was ND from around the same age and people told me it was just normal development, but I just knew. He didn't sleep through the night until 3, it's like he's on turbo from the minute he wakes up, he talks constantly. He jumps and flaps his hand when excited. He's actually very social and spoke at a young age and was always confident talking to adults and children but to the extent where he's missing social cues. He could also remember facts to a degree where people would comment. His emotional reactions have always been very big despite having quite good emotional intelligence and understanding of how others are feeling. All I would get from PIL was oh he's just like DH at that age. I suspected DH was also ND, DH has since been diagnosed as AuDHD and ds (now 7) is on the pathway but every doctor and teacher who has met him in the last couple of years, you say we suspect he is ND and they say oh yes you can see that. It's also showing itself in other ways in school dysgraphia is suspected but his reading and comprehension is way beyond his years. In my area they won't address for ADHD until 7, autism can be younger if there is family history, so just watch and wait and talk to the staff who work with her

You could look at MCHAT, this is a screening tool not a diagnostic one so can give an idea but a positive or negative outcome is not definitive: www.mchatscreen.com

@TheCurious0range it’s very hard to constantly be told that it’s just her being a toddler when you see toddlers on a daily basis and you can see that they’re not all as dysregulated. Going to CBeebies land with her was a real eye opener in terms of how many other children were there and how you could see the melt downs in the gift shop for instance for a particular toy (completely normal imo) but the NEEDING to be carried and it having to be just by one person and even then crying and being irritated and interestingly the part she loved was the little sensory area. But after we came out of there she became dysregulated again. I’m not expecting a diagnosis so soon but I do need support as I feel like things are getting worse. I can’t even make her dinner without her screaming and crying for me. She was walking on the sofa before and could clearly see the sofa ends but again, no sense of awareness of danger she was about to just run off of the end of the sofa. I love her to bits I really do, I want to be able to support her and I know there’s no magic pill but I’d love some strategies on how to manage and for that I need a doctor or the HV to acknowledge this doesn’t fall within the ‘normal’ developmental behaviours range. The nursery can see it too, although we’ve acknowledged she’s still young for a formal diagnosis yet, but they can see wha I’m talking about too.

I couldn’t

neither can most doctors until they are older unless it’s really profound (no speech, no comms etc).

my dd was diagnosed much later.

if you are worried about it then parent as if ND.

it won’t harm her and it helps with a lot of children who have sensory sensitivities etc.

I completely understand wanting to know if your child is ND or not but realistically it does take time to become clear unless children are non verbal / other significant concerns.

Would it really make a difference if you were told she is autistic? It becomes clearer at school age imo.

I didn’t cos it was all normal to me. My 3rd is 3 years old and whilst very different to his siblings he is also without a doubt ND.

ND becomes more pronounced as they get older as everything you describe is normal 2 year old behaviour (as well as ND traits)

My 3 year old is 100% ND; sensory issues, transition between tasks, wanting to dictate / control all the time, and issues with food, seems to be a real struggle with the ‘demand’ of sitting at the table and has always been this way. Melt downs if he cannot control / dictate. He needs careful parenting and really strong boundaries. Seems to respond best to: the rules are…

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)

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.

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

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.

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

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!

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.

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.

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.

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.

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.

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.

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.

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.

Thank you. It seems as though the general approach is to wait because you just don’t know. I do like the approach of parenting as if she is ND in case she is as ND is present on both sides.

I’m just not sure how I would parent her as if she was ND? What do I do differently? I already offer plenty of reassurance, give praise when she’s good, try not to feed into ‘bad behaviour’

I feel as though I get ‘looks’ when we went out like I’m giving her ten cans of coke and five bags of sweets and it’s my fault she’s acting the way she is. I want support hence why I’ve come on here too but I don’t know how to go about it and what to do? The health visitor isn’t that helpful in this regard if I’m honest. Could the GP help maybe?

I know a label won’t change anything in the grand scheme of things but what I’m after is help and support on how to manage and I don’t know how I’d get that?

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 .