Parents of ND children: did you always suspect your child was ND?

[wonderingmumtonight]

I'm the mum to a gorgeous 6 yo boy. He's always been a happy chappy but we've noticed his behaviour has changed in the past year or so and he's been struggling in school (mostly not listening well or being cheeky), so they have suggested he might have some neurodiversity and we should have him assessed. I've heard many mums say "they always knew there was something different," but I didn't have that. (I'm a nurse and have some experience with ND diagnoses). I've seen him in many settings and he always seems to behave like other children his age, if perhaps a bit shy but warms up quickly. So I'm wondering what sorts of things did you later think back on and recognise as being early signs of ND?

I am fully in favour of getting him whatever help or support he might need but I am also surprised, as I never suspected anything and neither DH nor I have any ND in the family. He's also been through loads in the past year or so (we moved, had a new baby, our beloved dog died, he was also bullied). So it seems like there could be other reasons for changes in his behaviour than just ND? Will that be incorporated into the assessments?

Both my DC are diagnosed autistic. One of them I knew since she was very small although she wasn't diagnosed until 12. The other I knew had some traits and difficulties but I didn't think it was autism until she got to secondary school.

At his age there are so many developmental variations that I would be tempted to monitor for a while longer if there have been no earlier signs. However, waiting times for assessment can be very long so best not to leave it indefinitely.

Nothing in your post points me towards thinking your ds might be ND. Obviously there may be signs that school have picked up on but being cheeky etc is not a sign of neurodiversity.

With my ds things were definitely not as expected from birth. Cried literally all the time, stimmed and rocked as a baby, lots of repetitive actions, rewatched movies over and over (sometimes 3x a day), dreadful screaming/vomiting meltdowns daily when he started school until they put multiple interventions in place. Plus much more.
Despite all this he didn't get a diagnosis of autism until he was 14 years old! Go figure?!

Sorry, didn't fully answer your question. "Shyness" was one of the things I didn't realise was an early trait. Also somewhat unusual ways of playing.

If him being cheeky and not listening well are the only things, I’m not sure that’s in any way indicative of ND.

Were there other things they mentioned?

I didn’t notice concerns until yr1 but we were in lockdown while she was in nursery and reception. Going for assessment next month.

Yes it was a possibility before she was even born as it is highly likely my DBro and DDad both are (along with many, many people in my paternal family tree). She was always quirky but I always put it down to being an only child and us having a very quiet household. Never any challenging behaviour - that in itself was a sign as she's a extreme rule follower Start of secondary was challenging and we went private (I'd saved up as knew it could be required or the money could have been used for braces or overseas trips) diagnosed in year 8.

If you don't have anyone else in yours or his dad's family tree that might be ND then it's unlikely as it's normally inherited

Thank you for all of the responses. He has always been a bit shy but made friends easily in nursery and played in the same way they all did. We moved shortly before he started Reception and he was bullied by two other children (yes, the same age) quite brutally and he began to withdraw a bit, became quite fearful and didn't want to go to school, had nightmares, had wee and poo accidents. The school have said he makes friends easily but finds it difficult if they want to play in a group and instead goes off on his own. They have said that some days he will play by himself if one of his friends say they don't want to play. I don't know if this was true before the bullying or not but he is quite fearful of other children since that happened. He also does cheeky things like blowing raspberries on his arm for a laugh. His teacher said this is disruptive and sends him out of the class.

@Magamaga mind my asking what concerns you noted in year 1?

He sounds age appropriate and just needs some support with social skills, get him involved in something like Beavers (although that can be quite boisterous) a Lego club at the library or similar might be better suited to him

I noticed some stuff early on. My DC never crawled, was slow to walk, but a very early and enthusiastic talker. Spoke in complex sentences, using words like ‘otherwise’ and ‘meanwhile’ while paddling himself across the floor on his bum.

I was about as sure as I could be by the time he was 2.5.

BUT I already knew a lot about ND as my niece and nephews are AuDHD. I knew several parents of kids who were, to my mind, clearly autistic, but were totally surprised / offended when nursery raised it as a possibility.

No I didn't. But I think I might have been in denial or something. I think my child did not tick any of the stereotypes at all. Ahead on all milestones, clever, sociable. But, massive meltdowns and hyperactive. Being a single mum dealing with health challenges it could look very much like a traumatised child who needed better boundaries. He didn't, I was pretty good and invested despite my challenges. It's easy to blame yourself and that's what we all do before exploring other possibilities.

It was only by age 8 to 9 when I observed social interactions and saw it was not the same ( it didn't matter when younger as there wasn't much chit chat at those ages and he was fun and energetic ( still is) . But the social interactions became more complex by age 8 to 9 and I saw it and it knocked me sideways. The fight for diagnosis was painful and traumatic as I was forced to go private.

I think it becomes more clear with age in alot of cases. N

Oh, bless him. Yeah, there’s nothing in this that says ND to me - he’s had a move and started proper school and been picked on and the teacher’s a bit strict. He could probably use some more support but just in a general sense - more intervention by teachers into bullying, for a start!

"warms up quickly" is the exact opposite of my ND children!

Two things. One, rather than looking for whether he's changed look for whether the changes you are seeing could be explained by evolving social demands that he is not quite understanding. Is he missing context that others are getting? Does he need instructions more explicit than others his age or does he struggle to process long sentences?

Second don't rely on teachers to mention if they see signs. They often wait for the parent to raise concerns first, and in any case they are not qualified to diagnose and might be less good at spotting subtle signs than you might assume. You really are the expert on your own child, even if you might not feel like it.

@Tittat50 yes, mine still has meltdowns but not often, maybe once a month at home, never at school. Often triggered by hunger or being tired. I do notice his interactions have changed, if he saw his mates when he was younger, he’d wave or say hello, now he tenses and blushes and doesn’t say a word. He’s slowly getting better about it but perhaps this is also a sign?

No. Dd was a textbook baby, no problems eating and slept like a dream. Hit all the usual milestones with walking and speaking.

it was only from age 2 she began to show some signs and nursery noticed before we did - lack of eye contact, responding to pointing and no following instructions.

@wonderingmumtonight if the school are saying this I would be certain there is much more they see that they aren't telling you. To say this I'd say they are pretty sure. They tend to avoid highlighting it for fear of upsetting parents.

Your instincts are also telling you something. With the state of the system right now and wait lists, I would absolutely ask them to support you in applying for an assessment. I can't tell you how important this is. It is vital in my view now I'm where I am at secondary school.

@Tittat50 thank you. Yes, I’m not at all opposed to havi mg him assessed, just a bit surprised as I’ve never picked up on anything except shyness (which I believed to be shyness and not especially remarkable, at least until he was bullied) and it seems the things they now point to were present earlier but he’s had a late regression of sorts (which I assumed was the life changes but perhaps wrongly!)

What did you notice about social interactions?

It sounds mild, whatever it is.

I thought until secondary one of mine wasn’t but then it turns out yep, they’re ND…

Being bullied is often how you first notice it I found. Both kids were bullied, one of them still is.

They don’t fully understand/ read the social setting and get picked on because they do things ever so slightly different. ND kids are vulnerable from that point of view.

Again with being cheeky he’s perhaps not reading the room, that’s why they’re suggesting it.

DS1 is autistic. I had no idea at all until his nursery very gently raised it when he was about 3.5. I was floored at the time but the more I looked into it, the more I accepted it was a possibility. By the time he was actually diagnosed (aged 6.5 - we didn't go for referral/assessment right away), I was pretty convinced he would be.

He spoke very well, could make eye contact, was very affectionate. But he didn't do imagination play at all - he'd push cars/trains around but it was because he liked how they felt our the shapes they made. He talked well to the adults at nursery but barely interacted with other children. He never really had awful meltdowns, but if he gets upset about something will run away and hide and withdraw from us.

DS2 (5) may also be, but his "quirks" haven't been enough to convince me to get him assessed yet. Plus having gone through it once before, I'm more alert to potential signs.

Yes I knew by age 3. I don't know where the knowledge came from, as I have (had) no experience of neurodiversity, I just knew.

No but in hindsight I should have

@Neverendingillness I can't even explain it accurately. It was in the playground. We'd been at a new school about 6 months. It's the way the other boys seemed to be in on something my son wasn't. Like they connected their eyes and conversation in a way he never did.

He was playing about in a world of his own bumping alongside them but not with them as such. They would look to each other in a way that connected them and he didn't.

I can't explain it any other way. Once I saw that I started to see much more.

Tbh sitting in on the autism assessment was shocking. I'd been there, involved intensely since birth and saw things I had no idea about him when he was assessed age 9. It's often like a few different people in one person in some ways and during the assessment this kind of highlighted that to me.

My son did not present like alot of Autistic kids although there were flags such as the meltdowns that others who had Autistic kids might have spotted and recognised. I didn't, I thought that was my fault parenting 🤦.

Yes I did. I suspected from literally 2 weeks old. People thought I was mad, but I knew. Now he has a diagnosis for ASD, ADHD and has an EHCP.

I didn't have the same feeling with his younger brother- and so far he seems NT.

@PlopSofa thank you, yes I have read that bullying can be a sign, poor mite

@Tittat50 thank you, yes the school have said he’s not keen on playing in a group, I thought this was shyness or from bullying but perhaps is ND. What do you mean with meltdowns? Mine has these still (not often, once a month I’d say) which I assumed was normal (and usually related to being extremely hungry or tired).