I keep hearing my son might be neurodivergent but I don't feel he is

[user1477259453]

Basically, my son is nearly six and he has a few behaviours that I understand could be seen as neurodivergent. The teacher and his play therapist have said this. (He has a play therapist because my younger son was in hospital for seven months as a baby, when my older son was three, so I was away for months... And since I have gone back to work recently he has seemed unsettled so we were worried about him feeling abandonment)...... He hates having his hair cut. He benefits from structure and knowing what the day will look like at school. He has hyperfocus on certain interests (currently Mario... He will draw about Mario, imaginary play about him, play Mario games on the computer, etc etc) and he is aloof/rude with some new people. By no means all, some people he takes to immediately. He also sometimes gets a little overwhelmed in big loud places.

What I find frustrating is that people will make assumptions about the rest of his behaviour based on this? They will be surprised that he has never had a tantrum or meltdown in his life. He happily goes to anywhere new with me. He's a pretty good eater and his sleep is amazing. He is absolutely fine with any plan change that ever happens, far more so than I ever was as a kid. He enjoys playing with and communicates very appropriately with all of his peers at school and has warm friendships with them and with his teachers. He's very thoughtful and empathetic with those close to him, particularly me. He has a great understanding of inference and a good sense of humour, his understanding isn't inflexible or literal a lot of the time. He hit all milestones very appropriately in his pre school years.

I wouldn't mind if he had every behaviour that people expect from autism, or if people were suggesting he was neurodivergent just based on the behaviours he actually does have. But it just really annoys me when they make assumptions or suggest that I'm not being honest about the behaviour that I observe or that I'm blinkered in some way? It makes you think he's in this in between land and I think am I overlooking things that I could be helping him with but on the whole he doesn't need help and the little things that bother him come up infrequently and mildly and don't really affect any of us. Just after anyone who has been in a similar situation really. Did your child end up needing help in the future, did they turn out to not be autistic. Etc. Thanks!

Keep an open mind. Autism doesn't automatically equal struggle (it just often does, because the world isn't set up for us to cope very well).

A key framework for understanding autism comes from Proff Tony Attwood, who talks about how autism can be pretty undetectable, and/or not cause distress or difficulties, until a person's own resources are exceeded by the demands and situations around them. That commonly looks like an autistic child being "fine" in preschool and primary school, then not being able to cope with the new, more complex additional demands of secondary school - social, academic, organisational, etc. This can be what is happening when it seems someone "suddenly" presents with autism. They've always been autistic, of course, but it just hasn't been outwardly apparent until they became overwhelmed with the demands of life. Remember, autism isn't a condition of behaviours. It's a brain wiring. It can look like anything, it just frequently has common threads because of the way we cope with life and how our brains work.

(I know I've used autism here, but any ND condition applies. I'm autistic, so I've used autism because I understand it very well. I also have ADHD.)

I recommend reading Attwood's work, or watching some of his lectures on Youtube. They're accessible and enjoyable to listen to! Whatever happens, wishing the best for you and your son.

Bear in mind, also, that the vast majority of autistic adults dearly wish that their neurodivergency had been picked up on before they hit crisis point. With that in mind, I think the best think you can do is sort of watch and wait, with a positive and open mind to him maybe being ND.

My child was diagnosed Autistic at age 4 (she's now 8) and I have to say that going on purely what you've said in your OP, all of those behaviours (on paper at least) all point to neurodivergence. I say this also, because my DD didn't even display as many of the behaviours you described, and she got 10 out of a possible 12 markers. You needed 6 for a diagnosis.

Also, I promise it's not a 'bad' thing! Maybe I read your OP wrong but I very much got the impression that you see ASD/Neurodivergence as some kind of negative as though it's the suggestion your child could be ND, is some kind of insult!

I cried my eyes out the day she was diagnosed. But I soon realised it's just not a big deal. Not like I thought it would be anyway. It's just something on her medical records! She doesn't need any additional support within the classroom (so I'm told very confidently) and doesn't require an EHCP. It's an explanation for her not fully understanding somethings & explains a few minor behaviours/reactions to some things which aren't always present. That's literally it!

Thank you! No I don't see it as negative as such, I just don't know what to do with the information at this stage? It would be fine if I felt more certain about it, but I don't want to make a fuss and go in all guns blazing when there might not be an issue. I recognize that some of his behaviours might look like ND on paper but I think it's relevant that in his little life he's gone through me coping with the loss of my Mum, his brother being sick and me being gone for a long time, several COVID lockdowns, and a house move. I actually think he's dealt with it all brilliantly but I guess that's one of the main reasons I don't want to rush ahead with making assumptions. He's been around so much upheaval and upset that I can't be sure which is which.

One final thing I forgot to mention - my DD reacts to change absolutely fine. No issues but as I said, still diagnosed autistic. Like many. They're not all averse to sudden changes.

What my DD does need however, is to know in advance if we have to go somewhere she reallllllllly doesn't like! If I mention it in advance - no meltdown. It doesn't need to be somewhere she likes for her to be ok with it either, just not somewhere she hates!

Proper meltdowns are rare these days though, thankfully. Not disappeared completely, just rare! We do get many mini-meltdowns though!

She sounds like she's doing brilliantly. Can I ask why she got diagnosed, or did she not get a formal diagnosis? It sounds like she's thriving. And you do make it sound less scary x

Have they actually said autism? My DC1 is dyspraxic and has a number of those traits. People often think dyspraxia is allabout being uncoordinated (its very much the CInderealla of the ND world and very under researched compared to other conditions) but it is actually about the brain being wired differently. At that age DC was very overwhelmed by loud noises, wouldn't have their hair cut (hated having it brushed even), could be very shy in a new place/with new people until they'd had time to sit quietly in a corner and adjust, was obsessed with music (still is). They are not autistic but they are dyspraxic and there appears to be some overlap. It all came to a head when it became apparent that they couldn't process information by silent reading but needed to read aloud. I just wish we'd had an earlier diagnosis.

I worry that it sometimes feels like we've forgotten that NT people have individual personalities and quirks same as ND people. If he's not experiencing any difficulties at this stage, then I personally wouldn't be pursuing a diagnosis. I'd keep a bit of a diary that I could refer back to if the situation changes and you do wish to seek a diagnosis.

I have four Autistic children, they're all very different from each other. They all have friends, they do well at school and they are quite and concentious, some of them meltdown at home, some of them don't. They all have empathy and if anything feel too much.

My eldest was diagnosed last and much older than her siblings because she is very good at masking and is a much more flexible thinker. She hit every milestone, many early. She was a fluent early talker, she has lots of friends, she does great academically. I would have sworn blind she didn't stim, that she made eye contact. It was only through getting her siblings diagnosed that I started or see the underlying similarities between them. If your DS play therapist is experienced I would listen to what she says with an open mind. Seeking and/or getting a diagnosis won't change who he is but it will help him understand himself more if he is Autistic.

As someone whose child was diagnosed after transitioning to secondary school, it has been traumatic; if we had seen the signs earlier and had support for her in place 2/3/4 years ago, I would hope we could have avoided the absolute shitshow we have now.

If someone is offering a referral for assessment please take it, so you don't have to look back and wonder what if.

I was going to say exactly this.

Any autism is far more nuanced than the list of symptoms you will find on NHS website.

You have two different people with a hunch independent of each other.

If at least a) be open minded b) do some proper research

And autism *

I think you are making the mistake of thinking every box must be checked. I did the same as my child is empathetic, incredibly imaginative, relaxed about routine, popular but has a diagnosis of ADHD. Issues are around anxiety, sensory issues, social fatigue which can lead to an aloof manner as they try to create space for themselves.

@user1477259453 What do you mean by why she got diagnosed?

@user1477259453 As I said in my first post, she was diagnosed aged 4 (formal diagnosis by NHS). I'm very confused by you asking 'why?'

Teachers and other professionals see hundreds of children your child's age. You see one. Honestly, we can spot a child who's a bit different a mile off. You can't because you're with them day in day out and you only know your own child.

I know a little girl who clearly has something. I'm not in a position to say so. School have alluded to it on several occasions and I have agreed with them. Parents still in denial. It's becoming more and more apparent as the child becomes older. Another child, school have mentioned ADHD, I also think ADHD, parent would rather child wasn't labelled. Child is labelled - as naughty.

My own autistic child has an amazing sense of humour, is incredibly kind and caring and senses others emotions and was the most chilled out child until he was about 8.

I don't think it's particularly helpful to ignore two different professionals suggesting kindly that they may be needing support in the future.

Sorry I didn't mean to cause offence. I thought it was similar to my situation here, where a few people have suggested it could be that, but nobody has actually said to get a diagnosis because he's so far managing fine. So I was wondering why it would be necessary to get a formal diagnosis if no input has been required.

My DD was quirky throughout Primary school but I put that down to her being an only child, she has always had impeccable behaviour at all times, never ever broken a rule. Loves going to new places (although doesn't like surprises and wants to be involved in the planning). Was a perfectly sociable child seemed to largely fit in with peers although liked time alone, didn't enjoy role play, when she did play with role play toys she would perfectly recreate stories and TV shows. She is very skilled practically at creative activities but finds thinking up ideas from scratch incredibly difficult. She coped so well as she was able to mask and cope with the demands on her and her exceptional academic ability camouflaged her struggles.

It all went wrong when she started Secondary school, she simply couldn't cope with the noisy, less structured routine, crowds, noises etc. Ended up burning out, having panic attacks and developing tics. School didn't pick up on her autistic behaviours until AFTER her diagnosis but they've become less subtle as she tries to mask less.

My advice, write down anything that seems a little off, it may be ASD it may not, it'll likely show itself more definitively at a big transition ie moving to a new school or education stage. Start saving so you can go private and skip the 4+years waiting list if necessary when he is older, diagnosis costs around £2500. Enjoy your son for who he is.

Thank you so much this is brilliant advice x

Also the benefits of getting a diagnosis is that 1) it becomes easier to parent because you have a justification to parent differently (you shouldn't need this but it helps in your own head) 2) you have a bit of clout when asking for adjustments to be made at school although these should be needs based not diagnosis based.

In terms of parenting I know to reduce demands on DD if she has had a stressful week with lots of changes, not to try new recipes or plan any unusual activities if possible as her battery is drained and she needs routine and favourite foods.
I understand she needs solo time to recharge she's not being rude wearing her noise cancelling headphones.
I try not to get annoyed at her for not picking up on nuance and reading between the lines when it comes to helping around the house or expect her to know to do something, I change my communication style to tell her directly what to do and she does it without fuss.
I'm mindful of unnecessary noise, trying to talk to her in the kitchen with extraction fan on, washing machine, oven going etc is pointless not to mention overwhelming.
I know to involve her in planning trips, not to over schedule the trip and to have nothing else planned on travel days.

At school she can go to a small social group at lunch and has permission to listen to music on her noise cancelling headphone to recharge for the afternoon. She gets a small room for all year group assessments, She can use a fidget to help her when becoming overwhelmed, can leave the class if she starts ticing. Has access to a toilet without hand driers.

She didn't need any of these adjustments at Primary School and coped perfectly well with the school environment and was pretty flexible with day-to-day life.

My child was the same at 3 and 6 years old. At 7 yo he started to meltdown repeatedly. At 7.5 he started to be violent and not sleep. At 7.75 we put in his autism assessment forms.

My view is that he bobbed along until he was in y2 and then had a rude awakening into the world. He has come quickly.

But some days are better than others and I know he will come good.

Don't worry op, and don't dwell on it for now.

Just to chime in here - my 12 year old was a bit quirky and unique as a little one, but coped well with all sorts of change and life events. No signs we could see of anything being ND. Then the wheels came off when he started at a big, challenging secondary school. There is a whole thread on here from me last year struggling with his massive anxiety and panic attacks and refusing to accept people’s suggestions he might be autistic. We just got his diagnosis that he is a couple of weeks ago. Had we known earlier we would have chosen a different school, and been able to work with him and them to avoid the trauma of this year

l’d listen to what people are saying.

My Dd slipped under the radar. Diagnosed at 16, and now refusing school at 17.

I think it would have been very different if she’d been diagnosed earlier. She only displayed a very few traits.

@usernamebore I was shocked at the change in my DD when she started Secondary, it was like she became a shell of her former self. She is starting to perk back up now though and her school have been fabulous.

Have you been able to get things put in place at school yet? I made it very clear to DDs school that I had years teaching at a similar secondary and working with children with ASD ie I know what I'm talking about in the hope it would give me some clout, I clearly put forward what she needed and the justification and my expectations for the adjustments that should be put in place and they put everything in place with no fuss. I imagine for a parent not experienced in the current school system and possible adjustments it can be hard to know what to ask for. So if you haven't got support in place yet I'm happy to help you set out what might help your DC.